Copyright is owned by the Author of the thesis. Permission is given for a copy to be downloaded by an individual for the purpose of research and private study only. The thesis may not be reproduced elsewhere without the permission of the Author. FROM EXPERIENCING SOCIAL DISGUST TO PASSING AS NORMAL: SELF-CARE PROCESSES AMONG THAI PEOPLE SUFFERING FROM AIDS A thesis presented in fulfillment of the requirements for the degree of Doctor of Philosophy In Nursing At Massey University, Palmerston North, New Zealand Jirapa Siriwatanamethanon 2008 ABSTRACT AIDS is a chronic disease that seriously a ffects health, emotions, social relations and household economy. People living with HI V/AIDS experience great suffering, stigmatisation and discrimination from other people around them because they know that it is incurable, contagious, evokes social disgust and is a complex disease requiring life-long self-care. This research er explored ways people with HIV/AIDS take care of their health and manage th eir lives in the context of stigma and discrimination. A grounded theory study was conducted with 30 participants with HIV/AIDS, in Mahasarakham Province, Thailan d. Participants were recruited from an HIV/AIDS day care clinic and by snowball sa mpling. Data were gathered through in- depth interviews, participant observations and field notes made during home visits. Interviews were tape recorded, then transcribed verbatim. “From experiencing social disgust to passing as normal ” was generated inductively from the data as the basic social psychological process of Thai people living with HIV/AIDS. From experiencing social disgust to passing as normal comprised four categories: being HIV/AIDS, making choices, keeping well and feeling empowered. The category “being HIV/AIDS”- discoveri ng the meaning of having HIV/AIDS, comprises four concepts: being diagnos ed with HIV/AIDS, being stigmatised, suffering, and learning about HIV/AIDS. The category “mak ing choices”- to live a normal life, involves three c oncepts: avoiding unhappy situ ations, getting remarried and seeking support. The category “keep ing well”- maintaining emotional and physical health, includes eigh t concepts: religious practi ces, keeping a cheerful mind, self-treatment, taking care of the body, k eeping the environment clean to prevent getting germs, healthy behaviours, getting healthcare services, a nd attention to, and concern about, medication. The last ca tegory “feeling empowered”- personal and social acceptance of illness, incl udes eight concepts: being encouraged, acknowledging the disease, social acceptance , tamjai, feeling proud of self, feeling good about life, feeling lucky and having hope. i ii In the context of northeastern Thailand, successful management of HIV/AIDS was underpinned by participants making a transition from “experiencing social disgust” to “passing as normal” within their communities. The desire to live a normal life despite having HIV/AIDS motivated participants to undertake effective self-care in order to remain symptom free (thus avoiding visible signs of the disease), and to selectively disclose their illness to avoid the ongoing risk of s tigma and discrimination. The findings of this study are useful in that they will provide Thai health professionals with a clearer conceptualisation of self-care am ong the Thai population. An inductively derived theory of self-care among Thai with HIV/AIDS can be applied and integrated by health professionals into the self-care models for people living with HIV/AIDS including models used in nur sing education, research and practice. ACKNOWLEDGEMENTS I would like to acknowledge first, the partic ipants and their families who shared their experiences with me and gave insights rega rding their self-care managing of their lives with HIV/AIDS. I would like to thank the hea lth professionals, especially the nurses at the HIV/AIDS day care clinic, Mahasarakham hospital, particularly, Ms. Kasemukda Chansiri, the head nurse in this clinic, who helped recruit th e participants and facilitated access to health records and other information during this study. Thanks to Mahasarakham hospital for allowing me to conduct this study. Without the participants and Mahasarakham hospital this research c ould not have been completed. I hope that the results from this study will benefit people living with HIV/AIDS in managing and living with the disease; also that the model can be used in nursing education in Thailand. I would like to express my deepest gratitude to Professors Julie Boddy, and Denise Dignam, and Associate Professor Khanit ta Nuntaboot–my supervisors–for their understanding, guidance, encouragement, great help and support throughout the process of study and completion of this dissertation. This study would not have been successful if I had not received all of their effort. I appreciate Dr. Denise Wilson and Lecturer Lesley Batten, for their expert advice, and support at the time I analysed the data. I especially thank all staff of the Nursi ng School of Massey University who supported me during the study. I am indebted to my colleagues and others: Kuephan Klankaradi, for her help typing the information sheet and consent form; Supatra Buatee, for her help with data collection and verbatim transcription; Piyaporn Boonpha dh, for her help with solving computer problems and Mr. Norman Mangnall, for his he lp with English excerpt correction after I translated from Thai to English. I part icularly want to acknowledge all my Thai friends for their support and sharing during the time of my PhD study at the School of Health and Social Services, Massey University. My deepest gratitude is extended to Ms. Ga y Eustace, whom I considered to be my mum in Palmerston North, for her love an d support. Her help and sharing of New Zealand culture with international students are highly appreciated. iii iv I would like to acknowledge the Royal Th ai Government for providing financial support for my PhD study. Thanks also go to my faculty, who allowed me time to study, especially Associate Professor Dr. Darunee Rujkorakarn and Associate Professor Walaiporn Nuntsupawat, and Massey Univer sity for giving me the chance to study, which enabled me to complete this thesis. LIST OF ACRONYMS AND GLOSSARY ACRONYMS AIDS Acquired Immunodeficiency Syndrome ARC Aids-Related Complex ARV Antiretroviral AZT Zidovudine CD4+ T-Lymphocyte Count FAO Food and Agriculture Organization GPO-vir A single tablet 3 drug combination regimen (d4T +3TC+Nevirapine) produced by the G overnment Pharmaceutical Organization (GPO) HAART Highly Active Antiretroviral Therapy HIV Human Immunodeficiency Virus MOH Ministry of Health MOPH Ministry of Public Health NGO Non Government Organization NIAID National Institute of Allergy and Infectious Diseases PCP Pneumocystis Carinii Pneumonia PLWHA People Living with HIV/AIDS SARS Severe Acute Respiratory Syndrome TB Tuberculosis UNAIDS Joint United Nations Programme on HIV/AIDS UNDP United Nations Development Programme VDRL Venereal Disease Research Laboratory WHO World Health Organization v GLOSSARY Thai A Ahan salang or kha- lum: Taboo food or forbidden food Amphur: District Arsaraha bucha day : Buddhist activity day (worship on the full-moon day of the 8th lunar month-July, It is the anniversary of the first sermon given by the Buddha after his enlightenment) B Baan rom yen: Cool shade house Baht : Currency unit (NZ$ 1=27 baht) Bai nard : The name of a leaf Bai yuow : The name of a leaf Bouw waan : Diabetes mellitus C Cham : An old man chosen as a spirit medium Chan : I, myself, oneself Changwat: Province Chue ra nai parg : Oral fungus D Dakie : The name of toothpaste (a particular brand) E Ethon : Pity F Faa tha laai jone : Name of plant Fab : The name of detergent powder (a particular brand) G Gue sawat : Herpes H Hiet-kong : The norms, rituals, tradition, cu stoms, practices, rule of Isaan vi Hue jai : Heart I Isaan : Northeast J Jai berk ban : Cheerful mind K Karma : The law of karma (belief in rebirth according to merit) Karma khow : Old karma Ka ra oo kae : Sing a song Khon leaw : Bad person Khum lung jai : Encouragement King amphur : Minor district Kin poa : Enough eating Kuam done lo hid sung : Hypertension Kun : Itchy M Makha bucha day : Buddhist activity day (worship on the full-moon day of the 3rd lunar month-February, in commemoration of the day that 1,250 monks gathered to listen to the Buddha’s preaching) Matahayom seuksa : Secondary school Mee kah : Valuable Mor : Health care providers (nurse, doctor, pharmacist and others) Mor duu : Fortune teller Mor nguu : Snake healer Mor naam man : Oil healer Mor pern ethon chan : Nurse took pity on me Mor paw : Blow healer Mor tham : Magic healer Muang : City Mubaan : Village Muu dip : Raw pork vii N Nah klua : Fearful Nah la ay : Shameful Namjai : Spirit Nam ya buan parg : Antiseptic solution Nok-heit-nok-kong : Out of, tradition, custom, practice, rule of Isaan Norn poa : Enough sleeping Nue dip : Raw beef O Orkpunsaa day: Buddhist activity day (the full moon of the 11th lunar month-October) (the end of the Lenten period for the Buddhist monks. Monks can leave the temple to go anywhere after Lent) P Pah pan phae : Bandage Phii: Spirit ghost Phii paa : The spirit of the forest Phu ying ha gin : Sex worker or prostitute Plong : Accepting situation Ploy mun pai : Let it go Prathom seuksa : Primary school Puad tong : Abdominal pain R Roke AIDS : AIDS disease Roke tid tor : Communicable disease Roke tid chue chuey oo gard : Opportunistic disease Ron nai : Glossitis Ruk sa bor souw: Incurable Rungkiat : Disgust S Sa aad : Clean Sabai jai: Easy mind, healthy mind viii Samoon prai : Herbal medicine Samson : Promiscuous or promiscuity Samson tang pase: Promiscuous sex Sa tha nee a na mai : Health centre S hampoo : Hair cleaning Sok ka pok : Dirty Suad mon : Praying Sungkom rungkiat: Social disgust T Tad : The four elements includes earth (din), water (naam), wind (lom) and fire (fai) Taay wai : Expect to die (die soon) Tambon : Sub-district Tam boon : Making merit Tam jai : Make mind up Tiffy : The name of medicine (anti-cold) Tod pah pa : Robe-giving ceremony to the monks Tong kin suk : Eating cooked food Tong taay nae : Must die for sure Ton ta krai hom : The name of a tree Tum : Papulae Tum chua dai chua : Do evil will receive evil Tum dee dai dee : Do good will receive good U Ugsape : Inflammation V Visakha bucha day : Buddhist activity day (worship on the full-moon day of the 6th lunar month-May-in commemoration of the birth, enlightment, and death of the Buddha that are all believed to have occurred on the same date) W Wan na rok pord : Pulmonary tuberculosis ix x Wat : Temple Y Yaan taay : Afraid to die Ya : Medicine Ya hark mai : Herb medicine (including roots and leaves of trees) Ya nuad gaee puad : Anti-ache by rubbing Ya pa ra : Paracetamol medicine Ya pong guun laee ruk sa : Preventive and curative medicine Ya samoon prai Thai : Thai traditional herb medicine Ya taan virus : Antiretroviral medicine Yay: Grandmother Z Zap Zap : Very delicious TABLE OF CONTENTS Abstract .......................................................................................................................... i Acknowledgements ..................................................................................................... iii List of Acronyms and Glossary .................................................................................... v Table of Contents......................................................................................................... xi List of Figures ........................................................................................................... xiv List of Tables ............................................................................................................. xv PART ONE ................................................................................................................... 1 CHAPTER 1: BACKGROUND TO THE STUDY...................................................... 1 1.1 Introduction ........................................................................................................... 1 1.2 Background Information about HIV/AIDS ........................................................... 3 1.3 The HIV/AIDS Situation in Thailand .................................................................... 9 1.4 Significance of the Study ..................................................................................... 13 1.5 Research Questions ............................................................................................. 16 1.6 Overview of the Study ......................................................................................... 16 1.7 Conclusion .......................................................................................................... 18 CHAPTER 2: REVIEW OF THE LITERATURE ..................................................... 19 2.1 Introduction ......................................................................................................... 19 2.2 The Stigma and Discrimination of HIV/AIDS .................................................... 19 2.3 The Health Care System in Thailand .................................................................. 22 2.4 Conceptualisations of Self-Care .......................................................................... 23 2.5 Influences on Decision Making about Self-Care ................................................. 25 2.6 Health-Seeking Behaviours ................................................................................. 27 2.7 Health Belief Model............................................................................................. 29 2.8 Health Beliefs of Isaan People............................................................................. 30 2.9 The Trajectory Framework .................................................................................. 33 2.10 Nursing Care for People Living with HIV/AIDS .............................................. 34 2.11 Conclusion ........................................................................................................ 35 CHAPTER 3: RESEARCH METHODS .................................................................... 36 3.1 Introduction.......................................................................................................... 36 3.2 Grounded Theory ................................................................................................ 36 xi 3.3 Symbolic Interactionism ...................................................................................... 37 3.4 Usefulness of Grounded Theory to Nursing ....................................................... 38 3.5 Ethical Considerations ......................................................................................... 39 3.6 Selection of the Study Site ................................................................................... 40 3.7 Participant Selection ............................................................................................ 44 3.8 Data Collection .................................................................................................... 46 3.9 Data Analysis ...................................................................................................... 50 3.10 Trustworthiness ................................................................................................. 56 3.11 Conclusion ......................................................................................................... 59 PART TWO ................................................................................................................ 60 CHAPTER 4: BEING HIV/AIDS .............................................................................. 60 4.1 Introduction.......................................................................................................... 60 4.2 Being HIV/AIDS: Being Di agnosed with HIV/AIDS ........................................ 61 4.3 Being HIV/AIDS: Being Stigmatised ................................................................. 66 4.4 Being HIV/AIDS: Suffering ............................................................................... 70 4.5 Being HIV/AIDS: Lear ning about HIV/AIDS ................................................... 74 4.6 Conclusion .......................................................................................................... 76 CHAPTER 5: MAKI NG CHOICES........................................................................... 78 5.1 Introduction.......................................................................................................... 78 5.2 Making Choices: Avoidi ng Unhappy Situations ................................................ 79 5.3 Making Choices: Seeking Support ...................................................................... 83 5.4 Making Choices: Getting Remarried .................................................................. 88 5.5 Conclusion .......................................................................................................... 91 CHAPTER 6: KEEPING WELL ................................................................................ 92 6.1 Introduction ......................................................................................................... 92 6.2 Keeping Well: Religious Practices ..................................................................... 93 6.3 Keeping Well: Keeping a Cheerful Mind ........................................................... 98 6.4 Keeping Well: Self-Treatment ........................................................................... 100 6.5 Keeping Well: Taking Care of the Body .......................................................... 103 6.6 Keeping Well: Keeping the Environment Clean to Prevent Getting Germs....................................................................................... 111 6.7 Keeping well: Healthy Behaviours .................................................................... 112 6.8 Keeping well: Getting Healthcare Services ...................................................... 115 xii xiii 6.9 Keeping well: Attention to, an d Concern about, Medication ............................ 117 6.10 Conclusion ...................................................................................................... 121 CHAPTER 7: FEELING EMPOWERED ................................................................ 122 7.1 Introduction ....................................................................................................... 122 7.2 Feeling Empowered: Being Encouraged .......................................................... 122 7.3 Feeling Empowered: Acknowledging the Disease ........................................... 127 7.4 Feeling Empowered: Social Acceptance ........................................................... 130 7.5 Feeling Empowered: Tamjai.............................................................................. 133 7.6 Feeling Empowered: Fee ling Proud of Self ...................................................... 136 7.7 Feeling Empowered: Feeling Good about Life.................................................. 139 7.8 Feeling Empowered: Feeling Lucky ................................................................. 142 7.9 Feeling Empowered: Having Hope.................................................................... 146 7.10 Conclusion ...................................................................................................... 149 CHAPTER 8: FROM EXPERIENCING SO CIAL DISGUST TO PASSING AS NORMAL ....................................................................................... 151 8.1 Introduction....................................................................................................... 151 8.2 Study Overview ................................................................................................ 151 8.3 The Components of the Theory ........................................................................ 154 8.4 From Experiencing Social Disgust to Passing as Normal ................................ 155 8.5 Implications of the Study .................................................................................. 163 8.6 Recommendations for Nursing Research.......................................................... 167 8.7 Recommendations for HIV/AIDS Health Policy in Thailand .......................... 169 8.8 Limitations of the Study.................................................................................... 171 8.9 Conclusion ........................................................................................................ 172 REFERENCES ......................................................................................................... 173 APPENDICES .......................................................................................................... 200 Appendix A: Letter from the Dire ctor Mahasarakham Hospital .............................. 201 Appendix B: Participant Information Sheet.............................................................. 202 Appendix C: Participant Consent Form.................................................................... 206 LIST OF FIGURES Figure 3-1 Map of Mahasarakham Province ..............................................................41 Figure 3-2 Mahasarakham Hospital............................................................................43 Figure 3-3 Basic Social Psychologi cal Process and Core Categories.........................55 Figure 4-1 Core Categories- Bei ng HIV/AIDS, Concepts and Codes........................61 Figure 5-1 Core Categories- Maki ng Choices, Concepts and Codes..........................78 Figure 6-1 Core Categories- Keep ing Well, Concepts and Codes..............................93 Figure 7-1 Core Categories-Feeling Empowered, Concepts and Codes...................123 Figure 8-1 The Basic Soci al Psychological Process “From Experiencing Social Disgust to Passing as Normal” .....................156 xiv LIST OF TABLES Table 3.1 Open Coding ...............................................................................................52 Table 3.2 Theoretical Coding .....................................................................................53 Table 8.1 The Codes, Concepts, Core Categories, Theoretical Propositions Basic Social Psychological Process .........................................................153 Table 8.2 Questions about Self-Care Management ..................................................165 xv PART ONE CHAPTER ONE BACKGROUND TO THE STUDY 1 . 1 INTRODUCTION This grounded theory study explores the ways in which Thai people with HIV/AIDS take care of their health and manage th eir lives in the context of stigma and discrimination (Nilmanart, Street, & Black ford, 2006; Paxton et al., 2005; Parker & Aggleton, 2003; Phengjard, Brown, Swanse n, & Schepp, 2002; Singhanetra-Renard, Chongsatitmun, & Aggleton, 2001; Sringer nyuang, Thaweesit, & Nakapiew, 2005; UNAIDS, 2004; UNAIDS; 2005b; UNDP, 2004). My interest in the topic stemmed from my involvement with people with HIV/AIDS in my work as a lecturer in community nursing at the Faculty of Nursing, Khon Kaen University for 12 years, and concurrently at the Northeast Center for AIDS Prevention and Care, Khon Kaen University for 5 years. I then worked as a lecturer in community nursing at the Faculty of Nursing, Mahasarakham University for 10 years. I noticed that despite my providing nursing care and health education for people living with HIV/AIDS in rural Northeast Thailand to assi st them to maintain their life and achieve well-being, it was difficult for people with HI V/AIDS to follow that advice because of having low education and being very poor. They needed to earn money day-by-day for daily living expenses. Most of them kept their HIV/AIDS status secret because of fear of stigmatisation and discrimination. These impressions focussed my desire to learn more about how Thai people living with HIV/AIDS take care of their health and manage their situation. HIV/AIDS is currently an important worl dwide health problem; AIDS remains the leading infectious cause of adult death in the world (Merson, 2006; Rhucharoenpornpanich & Chamratr ithirong, 2001; UNAIDS, 2006; UNDP, 2004; WHO, 2003). Complex medical, social, economic, political and ethical issues surrounding HIV/AIDS challenge those who are involved with the problem. 1 Moreover, treatment requirements are in creasing the demand worldwide on health resources (Danziger, 1994; Li et al ., 2007; UNAIDS, 2004). People living with HIV/AIDS and their families confront additional challenges due to the social context and stigma of HIV/AIDS (Alonzo & Reynolds, 1995; Lee, Kochman, & Sikkema, 2002; Mak et al., 2007; Phengjard et al., 2002; SaeTang & Nantachaipan, 2001; Songwathana, 1998; UNAIDS, 2005a). The HIV/AIDS epidemic in Thailand has aff ected all sectors of Thai society, although the number of new HIV cases per year decreased from more than 130,000 in the early 1990s to fewer than 20,000 cases in 2003 (Sunthrajarn, Wongkongkathep, Onnom, & Amornwichet, 2005). Currently, the number of new HIV infections is estimated to be about 17,000 cases a year (MOPH, 2007a). There are many people living with HIV/AIDS, an increasing number of whom are beginning to show symptoms from opportunistic infectious diseases associated with AIDS, and need care and treatment to maintain their lives at a time when Government health budgets are limited and expenses for treatment are very high (MOPH, 2006a; MOPH & World Bank, 2006; Nilmanat & Street, 2004; Thongsa-aad, 2003). As a result, AIDS is seriously affecting health, emotions, social relations and both household and government economies (Boom & Sherr, 2004; Kulsomboon, Than aviriyakul, & Pinyowiwat, 2004). A number of changes in healthcare policy and provision in Thailand over the past five years have impacted on people’s experience of living with HIV/AI DS. Prior to 2002, people living with AIDS suffered from a comparatively short illness with symptomatic disease and death. The majority of people with AIDS could not access health care because they were poor (MOPH, 2006a; MOPH, 2007a). Thailand has several health insurance schemes; however about 20% of Thai people are not in any scheme (MOPH, 2006b). The introduction of the “30 baht 1 universal coverage scheme” in 2001 enabled universal access to health care. However, only medications that were included on the national basic medicine list were permitted to be prescribed under that scheme. This list included preventive and curative care (treatment of all opportunistic infections), but excluded antiretroviral drugs 2 and costs associated with testing and monitoring. This situation changed following the July 2004 Bangkok 1 27 Thai baht is approximately equivalent to one NZ dollar 2 Antiretroviral drugs refer to medications for the treatment of infection by retroviruses, primarily HIV. 2 International AIDS Conference, where th e Thai Prime Minister announced that antiretroviral therapy would be included under the 30 baht universal coverage scheme. Thus, during the period of the inception, da ta collection and writing up of this study, changes in health policy have enabled Thai people with AIDS to live longer because they can now more readily access healthcare service and antiretroviral therapy (MOPH, 2007a, 2007b; MOPH & World Bank, 2006). However, in addition to healthcare and medication, people living with HIV/AIDS need a wide range of self- management strategies to deal with the condition and life events in their home environment. It is the latter strate gies that are the focus of this study. This introductory chapter provides background info rmation about the etiology of HIV/AIDS and the HIV/AIDS situation in Thailand, outlin es the significance of the study, presents the research questions and pr ovides an overview of the structure of the thesis. 1 .2 BACKGROUND INFORMATION ABOUT HIV/AIDS AIDS was first formally recognised as a new disease in 1981 in the United States of America (Barnett & Whiteside, 2002; Me rson, 2006; Pratt, 1995; Smith, 1996; Stine, 2003; WHO, 2003), in young homosexual men who were presenting with Kaposi’s sarcoma and serious infections, mainly pneumocystis carinii pneumonia, that were unusual in men of this age group with no underlying disease. AIDS is characterised as the breakdown of the body’s immune syst em, which then allows “opportunistic” infections to occur (Barne tt & Whiteside, 2002; Bartlett & Finkbeiner, 1998; Jonson, 1988; McMillan, 1992; Pratt, 1995). 1.2.1 Etiolog y Only two years after AIDS was first described, scientists in France isolated its causative agent which they called lymphodenopathy-associated virus (LAV) (Pratt, 1995). The virus was independently isolated by two groups of research workers in the USA, who called it human T-cell lymphotropic virus type III (HLTV-III) and AI DS - 3 associated retrovirus (ARV). The virus is now generally known as the human immunodeficiency virus (HIV) (McMillan, 199 2; Pratt, 1995). Viruses are extremely small life forms that are composed of a piece of nucleic acid (either DNA or RNA, but not both). The Human Immunodeficiency Virus (HIV) belongs to a group of retroviruses, more specifically called Retroviridae , subfamily Lentivirinae . Retroviruses are viruses that have a ribonucleic acid (RNA) genome and a lipid-containing membrane surrounding their capsid3 (McMillan, 1992; Pratt, 1995). Two serotypes of HIV are currently r ecognised, namely HIV-1 and HIV-2. Worldwide, the predominant vi rus is HIV-1. However, HIV- 2 appears to have spread in most West African countri es, although sporadic infections with this serotype have now been reported from Europe, Central and East Africa, as well as North America. The modes of transmission of HIV- 2 are si milar to those for HIV-1, however, HIV-2 may be less easily transmitted, less pathogenic and the spread between initial infection and illness may be longer in the case of HIV-2 (Pratt, 1995; Smith, 1996). Evidence of HIV-2 infections has been demonstrated in the sera from two foreigners who were admitted to hospitals in Bangkok. The first cas e came from West Africa and the other from India. Up to the end of 2000, no HIV-2 infection had been found in Thai serum samples (Chanbancherd et al., 2000; Wasi, 1995). However, differing subtypes of HIV-1 (subtype E and B strains) have been identified in Thailand (Subbarao, et al., 2000; Xiridou, et al., 2007), with the majority of cases being subtype E (Srisuphanunt, Sukeepaisarnchareon, Kucherer, & Pauli, 2004). HIV is a retrovirus that primarily infect s vital components of the human immune system. Most notably, CD4+ T lymphocyte counts are destroyed during the typical course of infection. These cells play a central role in the immune response, signalling other cells in the immune system to perform their special functions. A healthy, uninfected person usually has 500-1,600 CD4+ T lymphocyte counts per microlitre of blood. During HIV infection, the number of these cells progressively declines. When a person’s CD4+ T lymphocyte count falls be low 200 cells per microlitre, he or she becomes particularly vulnerable to the opportunistic infections and the syndromes that signal AIDS, the end stage of HIV disease (Barnett & Whiteside, 2002; Pratt, 1995). 3 Capsid is the protein shell of a virus (Pratt, 1995 ) 4 People with AIDS often suffer infections of the intestinal tract, lungs, brain, eyes and other organs, as well as debilitating weight loss, diarrhoea, neurological conditions and cancers such as Kaposi’s sarcoma and ly mphomas. It is believed that once an individual has become infected with HIV, he or she remains infected for life (NIAID, 2003). 1 . 2 . 2 Mode of Transmi s s i o n HIV is transmitted through three primary r outes; sexual contact with an infected person, significant exposure to infected blood or blood products (including needles shared among intravenous drug users) and perinatally from an infected mother to her child (Barnett & Whiteside, 2002; Bart lett & Finkbeiner, 1998; WHO, 2001). Laboratory and epidemiological studies have, however, shown that HIV is not transmitted by everyday contact, by touching, hugging or kissing, sneezing, through food or water or by mosquitoes and ot her biting insects (McMillan, 1992; WHO, 2001). 1.2.2.1 Sexual relation s Transmission through sexual intercourse between men occurs in most parts of the world, although in the devel oped countries it has become far less common as a result of the adoption of safer sex practices by homosexual men (Barnett & Whiteside, 2002; CDC, 2007; WHO, 2001). The majority of the world’s HIV infections have, in fact, been acquired through heterosexual intercourse (Barne tt & Whiteside, 2002; CDC, 2007; WHO, 2001). The most common way of exchanging bodily fluids and spreading the infection is unprotected penetrative sexual in tercourse. In these situations, HIV-infected seme n, vaginal fluid or blood fr om one person can pass into the other person’s body through tiny cuts or so res in the vagina, anus or penis. This mode of transmission continues to grow in importance worldwide, and is on the rise in both the developed and developing world (Barnett & Whiteside, 2002; CDC, 2007; WHO, 2001). Prevention of sexual tran smission of HIV and other sexually transmitted diseases can be achieved by 100 % condom use by persons whose sexual behaviours place them at risk. 5 1 . 2 . 2 . 2 Exposure to infected blood or blood products HIV infection is also transmitted through tr ansfusion of infected blood or blood products. In many parts of the world, progr ess towards a safer supply of blood and blood products is being achieved through the appropriate selection of donors, the screening of donated blood, and through mo re rational use of blood aimed at decreasing the number of people receiving transfusions. As a result, HIV infection resulting from contaminated blood transfusions has been controlled in developed countries and is declining elsewhere. Occupational expos ure can be reduced through applying universal precautions, especially for medical and nursing staff. Routine use of gloves and sterilising equipment will protect them against HIV transmission from patients (Barnett & Whiteside, 2002). However, illegal drug users who share unsterile injecting equipment have very high risk s of contracting the virus (Barnett & Whiteside, 2002; WHO, 2001). Th e provision of sterilised needles and syringes is effective in preventing transmission in this group. 1.2.2.3 Mother-to-child transmission Mother-to-child transmission depends on the condition of HIV positive mothers’ immune systems during pregnancy, delivery and breastfeeding (AIDSNet, 1998; Barnett & Whiteside, 2002). Much of the moth er-to-child transmission of the virus occurs during pregnancy and delivery, alt hough about 30% of all HIV infections transmitted from an infected mother to an uninfected child are reported to occur through breastfeeding (UNAIDS, 2002a). The progression of AIDS in perinatally infected children is rapid, with death occurring usually before the age of five years. An antiretroviral drugs regimen can reduce the risk of an HIV-infected mother transmitting the disease to her child by about 40% (WHO, 2001). For example, an HIV positive mother may take an antiret roviral drug such as Zidovudine-AZT during the last four weeks of pregna ncy, and then take a single dose of Nevirapine at the onset of delivery (Barnett & Whiteside, 2002) . Antiretroviral drugs are given to the infant within 72 hours of birth. When medica tions are not available, caesarean section is recommended instead of vaginal delivery, bu t this may not be available or practical in developing countries where many women lack access to healthcare services (Barnett & Whiteside, 2002; WHO, 2001). 6 In developed countries, including Thailand, HIV infected mothers are advised to use infant formula milk feeding, instead of breastfeeding, from birth. Formula milk feeding has been reported to reduce perinatal HIV infecti on in Thailand from 25-30 % to 18-20 % (AIDSNet, 1998). Nevertheless, formula milk feeding is not always available or appropriate, especially in poor families, where lack of affordability of formula products and risks accruing from poor housing conditions may result in babies dying from deficiency disease, or diarrhoea caused by dirty milk container equipment (AIDSNet, 1998; Barnett & Whiteside, 2002). 1.2.3 Stages of infec t i o n Nearly all infected persons remain well for several years after infection. However, most will develop AIDS within eight to te n years without treatment after infection. The shortest time for development of AIDS–t wo years or less from infection–is very unusual as most people are asymptomatic for at least five years (Bartlett & Finkbeiner, 1998). There are three stages of development of HIV infection: 1.2.3.1 Asymptomatic HIV infection The first stage of HIV infection is asym ptomatic. People may look and feel healthy for many years. However, even when they appear well they can pass the virus to others, especially through semen and vaginal secretions (Bartle tt & Finkbeiner, 1998; Jonson, 1988). 1.2.3.2 AIDS–related complex The second stage is called AIDS-related complex (ARC). In this stage, people with HIV infection will experience minor symptoms lasting more than one month such as fever, night sweats, enlarged lymph nodes in neck, armpits and gr oin, weight loss, diarrhoea, cough, oral thrush, oral hairy leukoplakia, fatigue and loss of appetite. Although AIDS-related complex may be serious, it is not necessarily fatal. Those who have it do not suffer from the opportunistic infections related to AIDS (Bartlett & Finkbeiner, 1998; Jonson, 1988). 7 1 . 2 . 3 . 3 AIDS The last stage of HIV infection is AIDS, which is diagnosed only when the immune system has been damaged by the HIV virus (CD4+T lymphocyte counts less than 200 cells per microlitre of blood) (Bartlett & Finkbeiner, 1998; Jonson, 1988; Stine, 1996, 2003). People with AIDS are vulnerable to opportunistic infections and malignancies because of their weakened immune syst ems. Common opportunistic infections and diseases include: 1) bacterial diseases su ch as tuberculosis, mycobacterium avium complex (MAC), bacterial pneumonia a nd septicaemia (blood poisoning). 2) protozoal diseases such as pneumocystis carinii pneumonia (PCP), toxoplasmosis, microsporidiasis, cryptosporidiosis, isopsoria sis and leishmaniasis. 3) fungal diseases such as candidiasis, crytococcosis and penici lliosis. 4) viral diseases such as those caused by cytomegalovirus, herpes simplex a nd herpes zoster virus. 5) HIV-related malignancies such as Kaposi’s sarcoma, lymphoma and squamous cell carcinoma (Bartlett & Finkbeiner, 1998; Pr att, 1995; Stine, 1996, 2003). In addition, the natural history of HIV infection in the average pati ent without antiretroviral therapy from the time of HIV transmission to death is 10-11 years (Bartlett & Gallant, 2000). 1 . 2 . 4 Treatmen t Since the discovery of HIV as the virus re sponsible for AIDS, i nvestigations have focused on the identification and clinical testing of agents that are capable of inactivating this virus. Most of these drugs function as inhibitors of reverse transcriptase (an enzyme unique to retrovir uses), although some have other modes of action such as being inhibitors of protease (MOH, 2004). Antiretroviral drugs are recommended for all people infected with HIV who have symptoms regardless of CD4+T lymphocyte counts, and for all asymptomatic patients whose CD4+T lymphocyte counts are below 200 cells per microlitre (MOH, 2004; Supakankunti, Phetnoi, & Tsunekawa, 2004). When an asymptomatic patient has a CD4+T lymphocyte count between 200 and 300 cells per microlitre then antiretroviral therapy may be considered on the basis of development of the immunological parameters (CD4+T lymphocyte count) and viral loads as well as other characteristics shown by the patient (motivation, willingness to adhe re to medication, co-i nfections) (Barnett & Whiteside, 2002; MOH, 2004). 8 Highly active antiretroviral ther apy (HAART) is an antiretr oviral regimen capable of suppressing HIV for many months, and perhap s years, in a significant number of persons. HAART consists of combinations of at least three drugs be longing to at least two types of antiretroviral agents. It usually involves the use of two reverse transcriptase inhibitors and one protease inhibitor. Although they do not cure, such treatments are effective in rapidly reducing the viral load, ther eby improving health and quality of life, which has led to pr olonged survival (Barnett & Whiteside, 2002; MOH, 2004). 1 . 3 THE HIV/AIDS SITUATION IN THAILAND The history of the HIV/AIDS epidemic in Thailand and the government’s response to the epidemic, are well described by Punpani ch, Ungchusak, and Detels (2004) and are only briefly summarised in this section. The first case of AIDS in Thailand was diagnosed in 1984 in a homosexual man re turning from overseas and receiving treatment in Bangkok (Phoolcharoen, Kunanus ont, Pitisuttithum, & Bhamarapravati, 2004; Punpanich et al., 2004; Thongcharo en, 1990). During 1984 to 1987, new cases were largely confined to Thai homosexual males. This period was followed by an explosive spread of HIV infection among injecting drug users in 1987 and 1988, when HIV prevalence rates among injecting drug users in Bangkok rose from 0 to 40 % (World Bank, 2006). The HIV virus then spre ad to sex workers and their clients in 1989 and 1990, with the result that heterosexual transmission became an increasingly important route. By 1994, the HIV preval ence rate had reached 31% among brothel- based sex workers, 38% of whom were foun d in the Northern region of Thailand (World Bank, 2006). Consequently, HIV sp read rapidly between sex workers and their clients. By 1994, one in ten clients was infected with the HIV virus. Those clients then infected their wives who, in turn, became pregnant and transmitted the HIV virus to their newborn. In 1991, the first perinatal cases were documented and the numbers of infected children increased in the following years (World Bank, 2006). 9 1 . 3 . 1 National respo n s e to th e HIV/AIDS epidemi c After the first AIDS case was recognised, AIDS was declared a severe communicable disease (Poolchareon et al., 2004; Punpanich et al., 2004; Sunthr ajarn et al., 2005). The responses of the government to HIV/ AIDS prevention and control, including the care of people living with HIV/AIDS from the beginning of the HIV/AIDS era to the present in Thailand, can be divide d into the following three phases: 1.3.1.1 Phase one During the first phase, prior to 1991, both th e government and private sectors were worried about the negative image of HIV/AIDS. They believed that the epidemic would remain concentrated in high-risk group behaviours, particularly injecting drug users and homosexual men (Poolchareon et al., 2004; Punpanich et al., 2004; Sunthrajarn et al., 2005). Th ai government policy on HIV/ AIDS control followed a standard public health approach that emphasised case reporting of AIDS through the medical system. However, the standard of re porting failed to detect the rapid spread of HIV infection, which can be asymptomatic for many years before the onset of AIDS, and there was limited information on high-ri sk groups. The public perception was that AIDS affected marginalised groups such as homosexual men, male sex workers and injecting drug users (Poolchareon et al., 2004; Punpanich et al., 2004; Sunthrajarn et al., 2005). The programme for prevention and control of AIDS included measures for programme management, health education, counselling, traini ng, surveillance, employing universal precautions in health care and blood safety control. The strategy focused on individuals at high risk by provi ding information, raising awareness, and delivering fear-inducing messages (Poolchare on et al., 2004; Sunthr ajarn et al., 2005). However, mandatory reporting of HIV infec tion was seen as creating stigmatisation and breaching human rights, and was abolished in 1991 (Punpanich et al., 2004). 1.3.1.2 Phase two The second phase includes the period from 1991-1996. The turning point in fighting AIDS in Thailand came in 1991, when AIDS prevention and control became a national priority at the highest level; responsibility for coordinating AIDS policy was placed with the Office of the Prime Mins ter and a multi-sectoral National AIDS Prevention and Control Committee that was chaired by the Prime Minister. The 10 programme benefited from strong political commitment from the Prime Minister’s office and mobilisation of the public, pr ivate and Non-Government Organization (NGO) sectors in the policy dialogue to fight AIDS. The plan urged society and community participation in the prevention of HIV and the care of people living with HIV/AIDS who were sick, and a reduction of stigma and discrimination (Ainsworth, Beyrer, & Soucat, 2001; Poolchareon et al., 2004; World Bank, 2006). The government strategy focussed on changing the risk behaviours among sex workers and their clients. Intensive public education on HIV/AIDS prevention was commenced through the mass media, incl uding one-minute AIDS education spots every hour on television and radio. These messages stressed prevention by condom use. The “100% condom programme” was in itiated to promote universal condom use in all commercial sex situations with the aim of preventing HIV transmission rather than suppressing commercial sex. The programme involved cooperation at provincial and local levels between public health officers, brothel owners, the local police, and sex workers to encourage all customers to use condoms when engaging in sex, with a slogan “use a condom with every client, in ev ery sex act”. If a client refused, he must be reported to the manager of the brothel. Under the programme, sex workers were screened for sexually transmitted diseases every week at the government sexually transmitted disease clinics, treated as required and provided with free condoms (Poolchareon et al., 2004; Punpanich et al., 2004; Sunthrajarn et al., 2005; Thanprasertsuk, 2007; UNAIDS, 2002a, 2002b). The government provided almost 60 million free condoms a year to support this programme (Rojanapithayakorn & Hanenberg, 1996). Subsequently, a 90% dec line in the rate of sexually transmitted diseases was documented. Other evidence of success included a reduction in HIV infection among army conscripts in the Northe rn region of Thailand (Ainsworth et al., 2001; Sunthrajarn et al., 2005; UNAIDS, 2000). Education on HIV/AIDS was introduced in to all schools from primary level upwards and provided through religious institutions. The whole society was involved including the movie industry and mass media. AIDS was approached not only as a health 11 problem but also as a social problem (P oolchareon et al., 2004; Punpanich et al., 2004; UNDP, 2004). 1.3.1.3 Phase three The third phase included the period from 1997 to the present. In 1997 a financial crisis affected the country that forced profound budget cuts and a reorientation of social affairs including the AIDS progr ammes. For example, the Ministry of Education decided to drop its plan for life skills education in schools (Poolchareon et al., 2004; Punpanich et al., 2004; Sunthrajarn et al., 2005). However, multi-sectoral collaboration remained the weak point of implementation, demanding broader and deeper understanding among staff about social aspects. The plan emphasised efforts to mobilise communities and civil society to initiate their own activities in HIV/AIDS prevention, care and alleviati on of the socioeconomic impact of AIDS. The plan included the main programmes such as empowerment of community and family, development of psychosocial care for HIV/AI DS sufferers, and health and medical care for HIV/AIDS, HIV/AIDS research (Pool chareon et al., 2004; Punpanich et al., 2004; Sunthrajarn et al., 2005). Besides the prevention strate gy, Thailand has included antiretroviral therapy into the service pack age in the social and health security programmes since 2005 (MOPH, 2007a). Although the HIV prevalence rates have d ecreased dramatically since the middle 1990s, the HIV/AIDS situation in Thailand is far from over. The last waves of new HIV infections among women and their children have started to decline, but the HIV prevalence rates among injecting drug users remain very high (Thanprasertsuk, 2004; World Bank, 2006). The HIV pr evalence rate among commercial sex workers has decreased because of the 100% condom us e programme. Nevertheless, sex workers remain a major risk group (Thanpraserts uk, 2004). With the large number of HIV infected persons (curre ntly estimated to be more than 500,000 ) , there is a potential for the epidemic to spread if prevention programmes are relaxed. At present, almost 80% of all HIV/AIDS cases occur among peopl e aged 20-39 and heterosexual transmission remains the major route of transmission (MOPH, 2006c). 12 Alongside the continuing focus on prevention programmes to control the epidemic, there is a parallel requirement to address the health needs of people with HIV/AIDS. Thailand has struggled with health service provision, particul arly in relation to fiscal resources and manpower (doctors and nurse s) (MOPH, 2006a, 2006b). That challenge is potentiated by the more extensive serv ices now available under the universal coverage scheme and the consequent availability of antiretroviral medication that transforms AIDS from a short fatal illness to a chronic illness requiring extended healthcare and treatment. 1 . 4 SIGNIFICANCE OF THE STUDY In this study, grounded theory was used as a method to gain new knowledge about self-care processes of Thai people suffering from AIDS. The study is significant for a number of reasons: the exte nt of suffering of the population group, the magnitude of the health problem, the economic implications of the age group that is predominantly affected, and–consequently–the need for effective self-care, and for inductively derived local knowledge for h ealth professionals to underpin their support of self- care. 1 . 4 . 1 The extent of suffer i n g People living with HIV/AIDS experience physical and psychological suffering and economic hardship. As previously discussed, infection with HIV leads to a variety of clinical conditions, such as episodes of illness, fever, sweats, headache, loss of weight, weakness, exhaustion, diarrhoea, pain and opportunistic in fection (Bartlett & Finkbeiner, 1998; Danziger, 1994). People livin g with HIV/AIDS and their families may also experience stigmatisation and discrimination from people around them, causing psychological and sociological problems such as depression, anxiety, fear, isolation and hopelessness (Danziger, 1994; UNAIDS, 2004). They are likely to lose their jobs due to their illn ess and experience a decrease in their physical capabilities (Yanwaree, 2002). 13 1 . 4 . 2 The magnitu d e of the proble m As previously stated, the HIV/AIDS epidemic in Thailand has affected all sectors of Thai society, although the number of new HI V cases per year decreased from more than 130,000 in the early 1990s to less than 20,000 cases in 2003 (Sunthrajarn et al., 2005). Currently, the number of new HIV inf ections is estimated to be about 17,000 cases a year (MOPH, 2007a). Although the HIV prevalence rates have decreased dramatically since the middle 1990s, the HIV/AI DS situation in Thailand is far from over. The maintenance of effective prevention programmes alongside extended healthcare provision for people with AIDS is a costly exercise for the government. 1.4.3 Economic imp lica t i o n s AIDS affects the economic state of people living with AIDS and their families, and their communities, at differing levels. Many fa mily breadwinners, in the prime of their working lives, are falling sick and dying prematurely. A rising number of wives are infected by their husbands. The long-term e ffect is that the parents of people living with AIDS, who are often elde rly people, must take care of their children and grand- children who are sick with AIDS (Dan ziger, 1994; Im-emm & Phuangsaichai, 1999; UNAIDS, 2004). This situation is made worse by the loss of earnings of the breadwinner. At government level, the high costs associated with treatment of large numbers of people with AIDS to maintain their lives at a time when Government health budgets are limited, are challengi ng (MOPH, 2006a, 2006b; Nilmanat & Street, 2004). As a result, AIDS is seriously a ffecting both the household and government economies (Boom & Sherr, 2004; Kulsomboon et al., 2004). 1 . 4 . 4 The need for effect i v e sel f-c a r e A focus on self-care has become increasingly evident in healthcare, with the rise in chronic illnesses and the world economic crisis stimulating the need for health care reform in Thailand (Hanucharurnkul, 2000; MOPH, 2006a). In Thailand, the National Health Care Reform Committee has included se lf-care as one of the key elements in primary care that is integrated, c ontinuous and holistic in nature. Self-care has been defined as “a process whereby a layperson functions on his/her own behalf in health promotion and prevention, and in disease detection and 14 treatment at the level of the primary he alth resource in the health care system ” (Levin, Katz, & Holst, 1976, p. 11). Self-care is very important for people with HIV/AIDS since if they care for themselves competently, they may extend their life span and prevent opportunistic infections from taking hold (Allan, 1990; Nilvarangkul, 2002; WHO, 1996). Effective se lf-care also reduces health costs and the impact on families. Self-care has been one of the key domain concepts in nursing since 1959, with the development of Orem’s self-care model (O rem, 1995). Over the past 10 years, many graduate nursing students have used Orem’s general theory of nursing, alone or in combination with other theories, as a con ceptual framework for quantitative research studies related to self-care (Hanucharur nkul, 2000). However, it is not clear how Orem’s theory which was developed within an individualist society (USA), fits with the collective identity of Thai people. Most Thai healthcare providers, including nurses, are more familiar with the medical model than with the self-care model. W ithin the medical model, an ill person is defined as a patient and as a care receiver (Sritanyarat, 1996). Thus, a patient is expected to change his or her behaviour to follow medical advice. Such an approach does not necessarily foster self-care as defined above. 1 . 4 . 5 The need for induc t i v e l y de riv e d local knowl e d g e for healt h profe s s io n a l s Theories and models of self-care that were developed in other countries may not ‘fit’ and ‘work’ in the Thai context. Unde rstanding the self-car e processes and the resources that people living with HIV/AIDS use to control and manage their symptoms is crucial for healthcare providers seeking to help clients in performing effective care and sustaining best quality of life (Chou, Holzemer, Portillo, & Slaughter, 2004). Such knowledge may guide the development of healthcare plans, strategies and interventions to facilitate effective self-care. A grounded theory approach was therefore utilised in this study to inductively derive substantive theory that “fits” and “works” in the c ontext of North Eastern Thailand. 15 1 . 5 RESEARCH QUESTIONS The broad questions that framed the study were: 1) What are the experiences of Thai pe ople suffering from AIDS, in managing and living with AIDS in the context of their environment in daily life? 2) What are the self-care processes of Thai people suffering from AIDS living in their own homes? 1.6 OVERVIEW OF THE STUDY This thesis is divided into two parts. Part I includes the first three chapters that provide a background to the study, review rele vant literature and detail the design and methods of the research. In Part II, Chapters Four to Seven present the findings in detail. Chapter Eight presents a theore tical model and concludes the study. In Chapter One, background information ab out the etiology of HIV/AIDS, and the HIV/AIDS situation in Thailand are outlined as a basis for identifying the significance of the study and the research questions. An ove rview of the structure of the thesis is provided. In Chapter Two, the literature pertaining to stigma and discrimination related to HIV/AIDS is examined, followed by an intr oduction to the health care context of the research. A broad review of self-care litera ture and the related literature on health- seeking behaviours and health beliefs in West ern and Thai contexts is undertaken that is indicative of my existing familiarity w ith professional and popular literature around self-care prior to undertaking this study, but including literature located throughout the duration of the study. In Chapter Three, the theoretical unde rpinnings of grounded theory methodology and its application in this study are illustrated. A rationale is provided for selection of grounded theory methodology as an appropriate approach to explore the ways that Thai people with HIV/AIDS take care of their health and manage their lives in the 16 context of stigma and discrimination. The methods of grounded th eory are outlined and their implementation in this study is detailed. In Chapter Four the category “being HIV/AIDS ” is outlined, that explains the initial experiences of the part icipants. The category “ being HIV/AIDS ” was supported by four concepts including being diagnosed with HIV/AIDS, being stigmatised, sufferi n g , and learning about HIV/AIDS . These concepts were identified by exploring the meaning, to participants , of having HIV/AIDS and their early experiences in managing and living with their HIV/AIDS. In Chapter Five the category “ making choices ” is presented. The action of making choices became important when people with HIV/AIDS revise d their understanding of what it means to have HIV/AIDS. Partic ipants made choices in order to live a “normal” life, learning how to manage their life situation to live as satisfying a life as possible with HIV/AIDS. Consistent with living in a collective society, managing relationships with others was a key elemen t in the choices made by participants; the category “making choices” was supported by the three concepts, including a v o i d i ng unhappy situations, seeking support , and g e t t i ng remar ri e d . In Chapter Six the category “ keeping well ” is described and illustrated. Keeping well describes the process by which the participants adjusted th eir daily activities in order to promote their physical well-being and maintain their lives. Participants were motivated to take good care of their physic al and mental health because they now believed HIV/AIDS was a chronic disease rath er than a rapidly fatal illness; and that they could face the future with HIV/AIDS. The category “keeping well” comprises eight concepts that include re l i gi ou s pract i c es , keeping a cheerful mind, self- treat m e n t , taking care of the body, keepin g the environment clean to prevent getting germs , healt h y behav i o u r s , getti n g healt h c a re servi c e s and a t t e n t i o n to, and concern about, medica t i o n . In Chapter Seven the category “feeling empowered” is presented. Feeling empowered refers to the positive energy that drives one to maintain and move forward with one’s life, which arises from having the will to live and the ability to cope with 17 18 life’s problems. Although they were confr onting significant health and social problems, the participants ma de the decision to live and not quit. They took strength from people in society who were accepting of their illness. “feeing empowered” includes the concepts b e i n g encoura g e d , acknowl e d g i n g the diseas e , social accept a n c e , tamjai , feelin g proud of se lf, feeling good about life, feelin g lucky and having hope. Chapter Eight presents a detailed descrip tion of the theoretical findings about the experiences of Thai people liv ing with HIV/AIDS that are encapsulated within the basic social psychological process “from experiencing social disgust to passing as normal” . The relationship of the findings of this study to those of other comparable studies is discussed, followed by the imp lications, recommendations and limitations of the study. 1 . 7 CONCLUSION This study is very important because appropriate self-care management while being HIV/AIDS depends on many factors such as physical, psychological, economical, political and social, which can cause major impacts on health conditions. Thus, this study is focused on the self-care processes of Thai people living with HIV/AIDS and the aim is to provide increased understanding of self-care processes which will lead them to develop their ability to manage their lives, based on the Thai Isaan perspective. By using grounded theory study, I hope that the process of the self-care model by which the study participants interpreted their experien ce of living with HIV/AIDS, and their interaction with others, will be useful for making recommendations to motivate people living with HIV/AIDS to practise self-care management appropriately. The next chapter will present a review of selected literature that is relevant to this study. CHAPTER TWO REVIEW OF THE LITERATURE 2.1 INTRODUCTION There is some debate about the place of a literature review in a grounded theory study. Glaser (1978, p.31) argues that the resear cher should read “in a substantive field different from the research” in order to a void shaping the analysis of the data to conform with known concepts and theories . Schreiber (2001), however, acknowledges that in the world of nursing the researcher often brings to the study an existing background familiarity with the field of study (as I have outlined on page one), and with the professional and popular literature. In the context of doctoral research, some familiarity with existing literature is requi red to demonstrate the importance of the problem or its significance in the broader field of knowledge (as outlined in the previous chapter), and to ensure that the proposed research is likely to answer the question of interest and provide an original contribution to knowledge. In this grounded theory study I explored the ways in which Thai people with HIV/AIDS take care of their health and manage their lives in the context of stigma and discrimination (Paxton et al., 2005; Phengjard et al., 2002; Phongphit, 2004; UNAIDS, 2004). In this chapter, the literat ure pertaining to stigma and discrimination related to HIV/AIDS is examined, followed by an introduction to the health care context of the research. A broa d review of self-care literature and the related literature on health-seeking behaviours a nd health beliefs in Wester n and Thai contexts is undertaken that is indicative of my existi ng familiarity with professional and popular literature around self-care prior to undertakin g this study, but in cluding literature located throughout the duration of the study. 2.2. THE STIGMA AND DIS CRIMINATION OF HIV/AIDS AIDS is now widely accepted as a chronic illness (Lee et al., 2002; Mak et al., 2007). People living with HIV/AIDS experience so cial stigma and discrimination (Boer & 19 Emons, 2004; Lee et al., 2002; Mak et al ., 2007; Parker & Aggleton, 2003; Phengjard et al., 2002). HIV/AIDS has been recognised as a stigmatised disease since the early cases of AIDS appeared among gay men and intravenous drug users in the United States in 1981 (Alonzo & Reynolds, 1995; Lee et al., 2002). The stigma of HIV/AIDS is reported to be greater than that of other stigmatised illnesses, such as cancer, leukemia and herpes (Lee et al., 2002), tuberculosis (TB) and seve re acute respiratory syndrome (SARS) (Mak et al., 2006). HIV-relate d stigma results in people living with HIV/AIDS experiencing shame, fear of disclosure, social rejection, lack of social support, social isolation and suicidal t houghts (Hudson, Lee, Miramontes, & Portillo, 2001; Lee et al., 2002; Nilmanat et al., 2006). Alonzo and Reynolds (1995) consider that AIDS is stigmatised because it is: 1) associated with deviant beha vior, both as a product and as a producer of deviant behavior; 2) vi ewed as the responsibility of the individual; 3) tainted by a religious belief as to its immorality and/or thought to be contracted via a morally sanctionable behavior and therefore thought to represent a character blemish; 4) perceived as contagious and threatening to the community; 5) associated with an undesirable and an unaesthetic form of death; and 6) not well understood by the lay community and viewed negatively by health care providers (p. 305). In addition, a major reason why people living with HIV/AIDS are stigmatised is that the stigma of HIV/AIDS is “layered” up on the stigmas related to homosexuality, drug users and sexual promiscuity (Lee et al., 2002, p. 310). This finding is confirmed by other studies (Ford & Koetsawang, 1991; Parker & Aggleton, 2003; Songwathana & Manderson, 1998; Sringernyuang et al., 2005). A stigma is a social construction which affects the life experiences of HIV-in fected people and their partners, families and friends (Alonzo & Reynolds, 1995). There are many reasons for rejection and disc rimination; in the Thai context the fear of contracting the virus from contact with people living with HIV/AIDS has been a major issue for Thai people (Nilvarangkul , 2002; Rujkorakarn, Siriwatanamethanon, 20 Kiewying, Sukmak et al., 2000; Songwathan a & Manderson, 1998). This fear arose from the first public media campaign on HIV/AIDS that the Thai government produced which was aimed at arousing fear of contracting HIV/AIDS, as a means of preventing and controlling HIV/AIDS in hi gh-risk groups, such as intravenous drug users, prostitutes and homo sexual men. Thus, the media por trayed the infection as lethal, incurable, a very severe disease that could be contracted by drug users or the sexually promiscuous, especially prostitutes (Lyttleton, 1994, 1996; Songwathana & Manderson, 1998). The perceptions of HIV/ AIDS were influenced by the public image of AIDS with pictures of patients w ho had ulcers and thrush in the mouth, and were very thin with unsightly skin lesions covered with discharge. This media approach contributed to negative attitudes toward AIDS patients rather than focusing on controlling and preventing the disease (Songwathana & Manderson, 1998). The impact of any government media campaign is significant in Thailand because of the lack of any other sources of information. In addition, Thai people feel that information about HIV/AIDS from the government is reliable (Songwathana & Manderson, 1998). Social rejection and stigmatisation are associ ated with the relative visibility of a disease. For example, diabetes mellitus is an invisible condition while a physical disability, such as paraplegia, is visible. Some diseases have both visible and invisible symptoms (Joachim & Acorn, 2000), such as leprosy, and HIV/AIDS. When people who have chronic illness including HIV/ AIDS have visible signs, they tend to experience greater rejection than when they do not have any visible signs (Songwathana & Manderson, 1998). Rejection and discrimination happen at both an individual and a societal level. The severity of rejection and discrimination is re ported to vary from one village to another (Rujkorakarn et al., 2000). Research ha s shown that community, family, and caregivers have grown in confidence to care for people with HIV/AIDS (Nilvarangkul, 2002; Phengjard et al., 2002; Rujkorakarn, Sangsuwan, Nuntaboot, Nantsupawat et al., 1997); and that people with HIV/AIDS are more confident and able to care for themselves with a better means to carry on living and promoting their quality of life (Nilvarangkul, 2002; Rujkorakarn et al., 1997). However, recent research continues to report prejudicial responses to people with HIV/AIDS in 21 Thailand (Nilmanat et al., 2006). The negative im age of AIDS is deep rooted in Thai society. In the following section the health care context of the research is outlined. 2.3 THE HEALTH CARE SYSTEM IN THAILAND The advance of modern medicine in the We stern world has led to the decline of the practice of traditional medicine in many countries in the world including Thailand, where modern medicine has become the majo r health care system and Thai traditional medicine is viewed as a branch of nonconventional medicine (Chokevivat, Chuthaputti, & Khumtrakul, 2005). The Thai health care system has gone through many reforms, having evolved from the self-r eliance which prevailed in the past (that is, the use of local wisdom for curative care and health promotion), to the system of modern medical and public health services (MOPH, 1998; MOPH, 2006a, 2006b). The health care system in Thailand comprises two sectors: the government and private sectors. In the government sect or, the Ministry of Public Health has the responsibility for promoting, supporting, controlling and co ordinating all public health service activities for the well-being of the Thai people. Medical and h ealth services are provided to people through the state’s regional and gene ral hospitals (Provincial Hospitals), community hospitals (District hospitals), health ce ntres and community health service stations. In addition, the Ministry of Educati on, the Ministry of Interior, the Ministry of Defence, and the Bangkok Me tropolitan Administration also carry out health-related activities or prov ide medical or health services. The private sector plays some part in providing curative care services for people who can afford the more expensive services. In 2003, there were a bout 436 private hospita ls, 10,819 clinics, 11,094 drugstores and 2,106 traditional medici ne drugstores in Thailand (MOPH, 2006a). In the new health care system, several leve ls of health care have been organised, beginning with self-care at the family le vel to the highest level of medical care provided by medical specialists. Numerous health personnel in various health disciplines have been produced under the new system, which also requires the 22 purchase and development of health technologies. Despite the advance of medical technologies, they cannot successfully cure ch ronic diseases related to lifestyle, which are major health problems in th e world (Chokevivat et al., 2005). Thailand has struggled with the provision of health care services; inadequacies in resources and a lack of manpower are major issues confronting the health care system in Thailand (MOPH, 2006a, 2006b) , especially, physicians and nurses. At present, the proportion of physicians to the population is 1: 3,295 and staff-nurses to the population is 1: 2,185 for the whole country (MOPH, 2006a, 2006b). Moreover, as the current estimated number of people with HI V/AIDS is more than half a million, the burden of health care will increase in the future. Given the Thai national policy on universal coverage of health care, the provision of adequa te manpower in the hospitals will be a critical challenge. As previously stated, a focus on self-care has become increasingly evident in health care, with the rise in chronic illnesses an d the world economic crisis stimulating the need for health care reform in Thailand (Hanucharurnku l, 2000; MOPH, 2006a, 2006b). For these reasons, self-care is em phasised and promoted as a strategy of primary health care in Thailand (MOPH, 2006a, 2006b). Effective self-care reduces both the burden of illness and the burden on healthcare systems (Thorne, Paterson, & Russell, 2003). 2.4 CONCEPTUALISATIONS OF SELF-CARE Self-care has always been one of th e key domain concepts in nursing (Hanucharurnkul, 2000), however there is no commonly agreed-upon term and scope of self-care. The frequently cited World Health Organisation (1983) of self-care is as follows: Self-care refers to the activities individuals, families and communities undertake with the inten tion of enhancing health, preventing disease, limiting illness, and restoring health. These activities are derived from knowledge and skills from the pool of both professional and lay 23 experience. They are undertaken by lay people on their own behalf, either separately or in participative collaboration with professionals. The WHO definition of self-care places emphasis on the responsibility of the individual or family to make decisions and take actions to promote or restore their own health. However, the self-care con cept commonly understood and utilised in nursing in Thai universities was influenced by Orem’s self-care theory and definitions (Hanucharurnkul, 2000). In this theory, self-c are is conceptualised as a goal and as a strategy in relation to the promotion of self-care for the individual, families, and communities, as elaborated below. According to Orem (1995, p. 103) “self-care is an action taken by mature and maturing individuals who have developed the capabilities to take care of themselves in their environmental situations”. Consis tent with the WHO definition above, Orem also states that “self-care is the practice of activities that individuals initiate and perform on their own behalf in maintaining life, health, and well-being” (Orem, 1995, p. 104). Self-care actions are di rected toward meeting three different types of self-care requirements including: 1) unive rsal self-care requisites, which are the basic needs of human beings. The universal self-care requisites are related to many factors, such as age, development, and environment, 2) de velopmental self-care requisites, which are needs relevant during developmental periods, and 3) health-deviation self-care requisites, which relate to taking care of oneself while being ill (Orem, 1995, pp. 108- 109). Orem suggests that eff ective performance in response to the three types of requisites identified above will produce environmental and personal conditions that 1) support life processes, 2) maintain human structures and human functioning within a normal range, 3) support development in accordance with human potential, 4) prevent injury and pathologic states, 5) contribute to the regulation or control of the effects of injury and pathology, 6) contribute to the cu re or regulation of pathologic processes, and 7) promote general well- being (Orem, 1995, p. 109). According to Orem, when the needs of self -care exceed the self-c are ability of an individual, a self-care defic it occurs. The reasons for insufficient self-care abilities include a lack of ability to perform the re quired self-care, or health related or 24 situational circumstances which preclude self-care actions. Orem’s theory is designed to identify the situations in which there is justification for nursing input to care (where there is a self-care deficit), or for sup port and promotion of individual self-care. Orem (1995) describes two phases of self- care action; the first phase of self-care action is intentional acts; decision making to perform self-care is an important step to enacting self-care. Productive action is the second phase of action that is able to be observed; external and internal conditions and circumstances can stop the action at any phase. It is important to understand what makes people decide to initiate self-care, particularly as it has been suggested that once people decide to manage their disease, they will do so at all times and in a consistent manner (Paterson, Russell, & Thorne, 2001). 2.5 INFLUENCES ON DECISION MAKING ABOUT SELF-CARE Several factors help people to make a de cision to undertake self -care action. People take action based on the meaning of situat ions to them. Meaning-making behaviours are an important part of human experi ence and understanding (Sarangi & Candlin, 2003). For example, Crossley (2004) suggested the importance of understanding subjective meaning to facilitating change in unsafe sex behaviours in gay men, while Pretorius, Goldstein, and Stuart (2005) re ported that rediscovery of spirituality, religious beliefs and compassion helped individuals with HIV/AIDS have an appreciation for life, a need for belongingness, community and positive experience of living with this disease. Cultural beliefs play an important role in decision making to initiate self-care. The ways people living with HI V/AIDS manage illness are likely to be shaped by interaction with society. In this way, the self-care actions of human beings can be derived through the meanings that they share with others. This construction of social understanding is evidenced by the way beliefs and culture strongly influences self- care during illness. For example, a study of health beliefs in Hmong found that traditional ceremonies for healing were important because of beliefs in spirits and ghosts (Johnson, 2002). Shared meanings about health and health care may also 25 contribute to negative self-care behaviour s. According to Papadopoulos (2000) the belief that God always pr otects human beings, held by Greek Cypriots, “almost encourages Greek people to take too many chances with their health” (Papadopoulos, 2000, p. 185). Information plays an important role in the development of appropriate self-care strategies in people living with HIV/AIDS (Chou et al., 2004). Huber and Cruz (2000) suggested that it is important to understand information seeking be haviors in order to manage information. Hogan and Palmer (2005) reported that individuals living with HIV/AIDS were easily overwhelmed by information, and preferred to seek information from health professionals rather than from print or media sources. Chou et al. (2004) reported self, healthcare providers, personal networks, and the community as sources of self-care information for people living with HIV/AIDS. Harris, Bausell, Scott, Hetherington, a nd Kavanagh (1998) found that instilling a sense of inner control and motivation were the factors required to empower HIV/AIDS people to improve self-esteem, whic h fostered self-care. Taking control of the illness situation can empower people living with HIV/AIDS to initiate and maintain self-care (Cote & Pepler , 2005; Makhubela, 1999). Adamsen (2002) indicated that self-help groups helped people living with HIV/AIDS to increase their self-confidence, which had a positive impact on their ability to cope with the psychological and social consequences of living with a life-threatening disease. Antiretroviral therapy has a key role in tr eatment for persons with HIV/AIDS. Recent evidence shows the impact of social support on the management of treatment adherence. For example, Simoni, Frick, and Huang (2006) found a correlation between social support and self-efficacy which predicted self-reported adherence with antiretroviral therapy; Campero, Herrera, Kendall, and Caballero (2007) suggested that social support is one factor that affects adherence to antiretroviral therapy in Mexico. Strong social support is also important for development of self-care in people living with a life-threatening condition such as HIV/AIDS. People living with this condition face many challenges, both within and outside themselves. Hand, Phillips, and Dudgeon (2006) state that social support is an elementary mediator of perceived 26 stress and can reduce feelings of emotional distress and depressive symptoms in people living with HIV/AIDS. Social support can help people living with HIV/AIDS to manage the uncertainty about HIV illness experience by assisting with information seeking and providing instrumental support (Brashers, Neidig, & Goldsmith, 2004). 2.6 HEALTH-SEEKING BEHAVIOURS Health-seeking behaviour refers to the seque nce of remedial actions that individuals undertake to rectify percei ved ill health (Ahmed, Ad ams, Chowdhury, & Bhuiya, 2000). Health-seeking behaviour is initiated by symptom identification and definition, whereupon a strategy for treatment action is devised. However, the symptoms will not necessarily be identified in biomedical terms nor will their recognition necessarily result in the kind health action expected by scientific medicine. Treatment choice involves a myriad of factors related to illness type and severity, preexisting lay beliefs about illness causation, the range and accessibility of therapeutic options available, and their perceived efficacy (Ahmed et al., 2000). People in both developing and developed countries may seek help from both traditional healers and healthcare facilities. Plummer et al. (2006) found that home remedies and visiting traditional healers and/ or health facilities were used by people living with AIDS in sub-Saharan Africa. Similarly in Korea, Cho (2004), in a study of the health-seeking behaviour of Kor ean women with Lymphodema, found that professional, folk and popular sectors of hea lth care were utilised; and that informants presented differing patterns of behaviour appropriate to each sector as they sought assistance. In the Thai context, family envir onment, cultural background, and personal experience influence illness behaviours (S angchart, 1997). Treatment is chosen according to the cultural meaning of the illness symptoms, which directs the selection of healthcare. Individuals seek help when they become aware of the illness. They are likely to discuss their symptoms with family members, cousins, friends, or neighbours before seeking help from healthcare services (Nadee, Intarasombat, & Hanucharurnkul, 1999; Sangchart, 1997). Consis tent with the findings of Plummer et 27 al. (2006) in sub-Saharan Africa, Thai people usually seek help from both indigenous healers and healthcare authorities (Sangchart, 1997). A number of researchers have studied the healthcare seeking behaviours of Isaan people1 . Charurnyut (1979) found that, initially , people who live in Isaan choose to treat themselves; secondly, they choose the local healthcare authorities, private health care and indigenous health care. Preedasawadi, Pradubmook, and Puranan (1987) demonstrated the influence of family and social networks on decisions about diagnosis and treatment that underpinned healthcare seeking behaviour. They identified three levels from which advice and treatment were sought among Isaan people: 1) Family: health decisions were usually made by the father and mother although all members of the multigenerational household may be involved in the discussion of symptoms and decision maki ng. The usual outcome was the purchase of over-the-counter drugs from grocery stores in the villages. 2). Relatives (extended kin networks): family would consult extende d kin networks including aunts and uncles and their kin networks according to their experiences of treating similar symptoms; decisions were based on the advice of people senior in the kin ne twork and mostly the strategies of senior people-such as usin g herbal medicines-were implemented. 3) Community level: people in the community who were not kin but had experience of treating similar symptoms may recommend treatment that worked for them, including indigenous healers, using herbal medicines and fortune tellers to tell about prognosis. Moreover, this researcher found that 93% of illness was cured by self-care. People in rural areas used multiple strategies to treat symptoms, for example taking antifever medication and resting, avoidi ng taboo food (Kha-lum) such as chicken, beef, bamboo shoot, pickled vegetables and i ce (Preedasawadi et al., 1987). The findings in the latter study are consistent with those of Thanasetaungkul et al. (1992) who reported that people experienci ng fever, cold, cough, diarrhoea, constipation and other symptoms firstly practised self-care by taking a rest, avoiding some taboo foods and giving a tepid sponge. So me took medications relevant to their illness . 1 Isaan people: people of Northeastern region of Thailand. 28 Budsadee (2000) undertook an ethnographic stu dy of health-seeking behaviour among people living with HIV/AIDS in Mahasarakham province. She found that patterns of health-seeking behaviour in corporated two processes: perception of AIDS and trialling healthcare. Health-s eeking behaviour incorporated phases of self-care, folk care and professional care with choices of care influenced by the perceived cause of sickness, the perceived efficacy of healing of differing treatments, the availability and cost of healthcare, and the fear of others finding out about the disease. Thus, choice of healthcare is influen ced by prior knowledge or experience of symptoms, perceptions of efficacy of particular treatments or forms of healthcare and also beliefs about cause and other conditions. Family members, relatives and neighbours are usually involved in the process, however ther e are obstacles to seeking help when there is a possibility of stigma and discrimination. For example, Wong, Gray, Ling, and Holroyd (2006) found that str eet sex workers were likely to self- medicate and delay in seeking healthcare. The literature on health-seeking behaviour cited above is consistent with the health belief model briefly described in the following section. 2.7 HEALTH BELIEF MODEL The health belief model was originally developed by Rosenstock in the 1950s and is based on the hypotheses that health behaviours depend mainly on the desire to avoid illness (or to get well) and the belief that a particular action will prevent or relieve illness (Malcolm, Ng, Rosen, & Stone, 2003). The Model’s key components are: • Perceived susceptibility (an individual's assessment of his/her risk of getting the condition) • Perceived severity (an individual's assessment of the seriousness of the condition, and its potential consequences) • Perceived barriers (an individual's assessmen t of the influences that facilitate or discourage adoption of the promoted behaviour) • Perceived benefits (an individual's assessment of the positive consequences of 29 adopting the behaviour). • Perceived efficacy (an individual's self-assessment of ability to successfully adopt the desired behaviour) • Cues to action (external influences promoting the desired behaviour) The key components in the health belief model may be useful for understanding individual health behaviours. The health beliefs held by individuals are likely to influence individual health prevention knowledge, behaviours and practices. Both social and cultural aspects influence the health belief model of individuals (Redding, Rossi, Rossi, Velicer, & Prochaska, 2000; Malcolm et al., 2003). Gillespie (2005) found that religious beliefs strongly influence health practices both in the prevention of, and in dealing with, il lness. The study by Schroeder et al. (2001) found that belief in the efficacy of medications make people who live with HIV/AIDS feel healthier. Morrison-Bee dy (1993) also reported perc eption of susceptibility to HIV was influenced by peers/partners and by knowledge about HIV. There has been very little Thai research in relation to the Health Belief model and its impact on health practices. In the following sections what has been reported about the health beliefs of Isaan people is summarised. 2.8 HEALTH BELIEFS OF ISAAN PEOPLE People in Isaan–especially in rural communities–usually live in small houses, which have only one room; the houses are built wi thin a small area in close proximity to their neighbours, facilitating the development of close relationships. Such relationships follow the norms (Hiet-kong) and rituals of society, leading to the social norm to achieve peaceful living (Ruengsuwan, 1977; Sangchart, 1997). Traditional farmers believe that human beings depend on, and live in the natural world both with in and outside its control. Nature has rules that must be followed in order to have safety and a good life. If people do not follow the rules, they believe they will be punished by nature. The prohibited behaviours, which are called “Kha- lum” , are the rules that guide Isaan people in th eir daily living. The rules are passed 30 from generation to generation. As society changes, some Kha-lum rules are no longer followed and some Kha-lum rules remain in practice in relation to health and illness (Sangchart, 1997). 2 . 8 . 1 Belie f s about healt h , illne s s an d treatm e n t modal i t y of tradit i o n a l heale r s among Isaan peopl e Beliefs among Isaan people underpinning hea lth, illness and the treatment modality of traditional healers can be categorised into three types of medical system (Chirawatkul, 1993). 2.8.1.1 Supernatura l medical system Belief that illness is effected by a sp irit underpins the utilisation of a Mor tham (magic healer) and cham (an old man chosen as a spirit medium). Villagers who behave against social rules, such as cuttin g a big tree without permission from the P hii paa (the spirit of the forest), treat the elderly badly, fail to recognise the ancestors, or make trouble with neighbours, risk punish ment by a spirit (Chirawatkul, 1993). A range of symptoms can be experienced by a person who is believed to be punished by a spirit, such as headache, stomach ache and loss of mind. Belief in the supernatural as respect to P hii (spirit-ghost) is based on the belief in the relationships between humans, nature and the environment. This reflects human views that a human being is a unit of nature. Spirit s live everywhere in nature or holy things to protect nature. There are believed to be two kinds of Spirit, good spirits which protect good humans, and bad spirits which cause people to get ill (Preedasawadi et al., 1987). According to Suwanaleid (1973), be lief in the supernatural cause of illness and treatment from this power guides people to choose indigenous healthcare instead of seeking help from health care authorities, especially where the disease is without known cause or incurable by present treatment. 2.8.1.2 Astrologic a l medical system Belief that human life is associated with the zodiac cycle movement underpins the choice of Mor duu (the fortune teller). Illness is regarded as bad luck that cannot be avoided, but can be cured by sprinkling holy water on the body or performing a 31 ceremony. According to Chirawatkul ( 1993) , the treatment modalities of mor duu are designed to make the clients release their emo tional tension and strengthen their souls. 2 . 8 . 1 . 3 Medical system based on the humoral theory The healers within this system include mor yaasamoon prai, mor nguu, mor paw, and mor naan man. They have a common belief that the human body is composed of four elements (tard); earth (din), water (naam), wind (lom) and fire (fai). Each element has its nature and function that relate to each other. When the four elements of the body are in equilibrium, the person will be healt hy. In contrast, if an imbalance in these elements happens, a person will become ill. Moreover, the imbalance in the four internal elements and illness can also be due to an imbalance in the four external elements. Thus, illness is caused by a bnormal elements and imbalance among elements (Chirawatkul, 1993; C hokevivat & Chuthaputti, 2005). 2 . 8 . 2 . Belie f in religi o n among Isaan people Belief in religion is important to Isaan people . The temple is the centre for many activities. Buddhism has been part of the life of Isaan people. People have adopted parts of these belief systems into their way of life. They believe the force of Dhamma is the most powerful force, able to dest roy the force of evil and spirits (Nuntaboot, 1994). Moreover, the rule of Buddhism is a str ong influence on perspectives of life among Isaan people. Boon-karma is the key rule, 1) boon is the result of good practices which follow the norms or “Hiet-kong” (the tradi tion, custom, practice, rule of Isaan) ; 2) karma is bad practices or beha viours against the norm or “ Nok-hiet-nok- kong”(out of tradition, custom , practice, rule of Issan) (Sangchart, 1997). These rules lead Isaan people to believe that illness is caused by the law of karma, which enables them to accept what is occurring without question or co mplaint. The present life situation is always determined by one’s previ ous karma. People have to select to react morally or positively to what has occurred. This generates positive karmic consequences for a better present and future life. It is believed that anything that happens which cannot be solved occurs because of the previous karma of that person. This belief has particularly applied to long or chronic illness and incurable disease 32 (Nuntaboot, 1994). Modernisation and adoption of Western healthcar e models and the migration of many young people to the cities for work has weakened adherence to religious tradition. However, the challenge of experiencing a life-th reatening illness and the need to find meaning (as outlined in section 2.5) are likely to support revisiting of religious beliefs and practices. As previously stated, there has been very little Thai research in relation to the Health Belief model and its impact on health practi ces; in Thai nursing research the focus has been on health-seeking behaviour and self-care using Orem’s mode l as a theoretical framework. Self-care research in Thailand based on Orem’s theory includes exploratory surveys, theory testing studies, nursing interv ention studies, and self-care outcome studies (Hanucharurnkul, 2000). These studies are focused on helping individuals and their families participate in self-care. Nurses facilitate individuals’ learning and developing skills to care for th emselves. However, the questions of what is appropriate self-care and who should decide remain problematic issues in the self- care project. Another framework, which has been influential in nursing research in relation to chronic illness such as, HIV/AIDS is the trajectory framework outlined by Corbin and Strauss (1992). 2.9 THE TRAJECTORY FRAMEWORK Corbin and Strauss (1992) argue that “nursing care is firs t directed at assisting with the prevention of illness and, should illness o ccur, with the proper management of the chronic condition, while giving consider ation to biographical needs and the performance of everyday living activities” ( p. 21). The major contribution of Corbin and Strauss to chronic illness management evolves around a nursing model for illness management based upon the “Trajectory Framework”, that is built around the idea that chronic conditions have a course that changes and varies over time (Corbin & Strauss, 1992). The trajectory framew ork consists of eight phases: 1) pretrajectory refers to before the illness course begins; 2) trajectory onset refers to when signs and symptoms are present, and includes a diagnostic period; 3) crisis refers to a life- 33 threatening situation; 4) acute refers to active illness or complications that require hospitalisation for management; 5) stable refers to illness course/ symptoms controlled by regimen; 6) unstable refers to illness course/symptoms not controlled by regimen, but not requiring hospitalisation; 7) downward refers to progressive deterioration in physical/mental st atus characterised by increasing disability/symptoms and 8) dying refers to immediate week s, days, hours preceding death (Corbin & Strauss, 1992, p. 17). The combined efforts of the individual, family, and healthcare providers are required to sh ape the illness course. The shaping process results in physical well-being and the pe rformance of everyday life activities. The trajectory framework ha s been examined (Nokes, 1991, 1998) in relation to its applicability to HIV/AIDS as a chroni c illness; and applied (Alonzo & Reynolds, 1995; Brashers, Neidig, Reynolds, & Haas, 1998) as a framework for analysis in HIV/AIDS. 2.10 NURSING CARE FOR PEOPLE LIVING WITH HIV/AIDS By providing care during illness to mainta in physical, psychological and spiritual health, nursing also aims at improving the quality of life of persons with chronic illnesses. As previously stated, when the pe rson experiences a self-care deficit (Orem, 1995), nursing assistance is required. The nur se plays a key role in assessing the individual’s self-care abili ty and helping the individual in the development of necessary illnesss-related self-care tasks and their behaviours (Anastasio, McMahan, Daniels, Nicholas, & Paul-Simon, 1995). The role for nurses in supporting people living with HIV/AIDS is varied and poten tially wide-reaching, in cluding education, support, referrals for resources and ongoing assessment, planning, implementing and evaluating the individual’s phys ical, mental and spiritual he alth. This process requires the nurse to understand the individual: no t only her/his physical, psychological and spiritual needs and abilities, but the social co ntext in which she or he lives (Anastasio et al., 1995). In order to give real assistance, nurses need to understand more about the experiences and responses of people livi ng with HIV/AIDS, their perceptions and their context. With this understanding, nurses can more effectively intervene during the process of people’s management and self-care of HIV/AIDS. 34 35 2.11 CONCLUSION In this chapter, the literature pertaining to stigma and discrimination related to HIV/AIDS was reviewed, followed by an introd uction to the healthcare context of the research. An overview of self-care literat ure and the related literature on health- seeking behaviours and health beliefs in Western and Thai contexts was undertaken that reflected my existing familiarity with professional and popular literature around self-care prior to undertaki ng this study, but incl uded literature located throughout the duration of the study. Self-care has always been integral to the lifestyle of Thai people as an action to promote their health, prevent disease and to maintain their survival. Traditionally, people have performed a range of forms of self-care and relied on their own beliefs and knowledge, and those of friends, family, neighbours, lay healers, and social networks, to handle common illnesses (Donkaewbua, 2005; Hanucharurnkul, 1994; MOPH, 2006a). Taking over-the-counter dr ugs, avoiding taboo foods, using herbs, massage and magic were the main strategies of healthcare. Improved access to modern healthcare has increased the opportunities for people living with HIV/AIDS to live an extended life with a chronic illne ss. However, traditional approaches to managing illness co-exist with Western healthcare. Health professionals in Thailand receive a Western health education, however, as previously stated, theories a nd models of self-care and the illness trajectory that were developed in other countries may not ‘f it’ and ‘work’ in the Thai context. Understanding the self-care processes and the resources th at Thai people living with HIV/AIDS use to control and manage thei r symptoms is crucial for healthcare providers such as nurses seeking to help patients in performing effective care and sustaining best quality of life. A grounded theory approach was therefore utilised in this study to inductively derive substantive theory that ‘fits’ and works’ in the context of North Eastern Thailand. The research design and methods of the study are described in the next chapter. CHAPTER THREE RESEARCH METHODS 3 . 1 INTRODUCTION In this chapter, th e theoretical underpinnings of grounded theory methodology and its application in this study are illustrated. A rationale is provided for selection of grounded theory methodology as an appropriate approach to explore the ways that Thai people with HIV/AIDS take care of their health and manage their lives in the context of stigma and discrimination. The methods of grounded th eory are outlined and their implementation in this study is detailed. In particular , the processes of obtaining ethics approval, selection of the study site and participants, demographics of the participants, data collection and analysis are detailed. Measures by which the trustworthiness of the study may be assessed are articulated. 3.2 GROUNDED THEORY Grounded theory, a systematic qualitative research approach, is aimed at developing an explanatory theory about a phenomenon of interest existing in a specific situation (Chenitz & Swanson, 1986, pp. 3-4). Grounde d theory methodology was originally developed by two sociologists, Barney Glaser and Anselm Strauss, at the University of California, San Francisco Medical Centre, while they were studying the interactions of hospital personnel with dying patients. Their first book The Discovery of Grounded Theory, Strategies for Qualitative Research was published in 1967. In 1978, Glaser produced a second book T heoretical Sensitivity: Advances in the Methodology of Grounded Theory that elaborated new methods of generating grounded theory that were not clearly expl ained in the first book. Strauss (1987), and Strauss and Corbin (1990, 1994, 1998) followed with an elaborati on of techniques and procedures for developing grounded theory with which Glaser (1992) took issue, resulting in a methodological split between the original authors. The divergence in approaches has been reviewed by a number of authors (e.g., Duchscher & Morgan, 2004; Heath & Cowley, 2004; Walker & Myrick, 2006). This study follows Glaser’s 36 interpretation of grounded theory methodology, sometimes referred to as classic grounded theory. According to Glaser and St rauss (1967), a grounded theory is inductively generated from the data of social research through the process of comparative analysis. Grounded theory methods involve simultaneous data collection, c oding, and analysis of data in order to identify a core category and related categories and concepts that underpin a substantive or formal theory about the phenomenon (Charmaz, 2006; Chenitz & Swanson, 1986; Dey, 1999; Finlay & Ballinger, 2006; Glaser, 1978; Glaser & Strauss, 1967). That theory must be grounde d in the reality of life experiences. That is, the theory must “fit the situation being researched and work when put into use” (Glaser & Strauss, 1967, p. 3). Glaser (1978, p. 57) suggests that three questions are important in maintaining a research focus; “What is the data a study of? What category does the incident indicate? What is really happening in the data?” Grounded theory methodology also allows for exploration of the interaction between subjective experience and social structure. The theoretical perspective that underpins grounded theory, as espoused by Glaser, is symbolic interactionism , which is a framework for understanding human behavior (Beck, 2004; Finlay & Ballinger, 2006; Glaser, 1978; Hutchinson, 1993; Mead, 1934, Wuest, 2007). 3 . 3 SYMBOLIC IN TERACTIONISM The notion of symbolic interaction–that is, the interac tion that takes place between people through the use of symbols such as spoken language, gestures or facial expressions–was first articulated by Mead (1934). Mead, a pragmatist philosopher, argued that the individual is a product of society; the self arising out of social experience as an object of socially sym bolic gestures and interactions, and the experience of role taking. Th rough “taking the role of othe r” the individual develops an ability to look back at self, and thus to develop a concept of self. Through interaction between the object and one’s se lf, the object is defined and meaning is attributed to it (Che nitz & Swanson, 1986). 37 Social interactionists view human behaviour as the result of process rather than structure (Chenitz & Swanson, 1986). All hum an behaviour or actions, individually or collectively, may therefore be viewed as th e result of “a vast inte rpretive process in which people, singly and collectively, gui de themselves by defining the objects, events and situations they encounter” (Blumer, 1969, p. 132). Blumer, a student of Mead, defines symbolic interactionism as “a label for a relatively distinctive approach to the study of human group life and human conduct” (1969, p. 1). In a much cited formulation, Blumer describes three basic premises on which symbolic interactionism rests. These are: 1) “human beings act toward things on the basis of the meanings that the things have for them”. These things may be objects, human beings, institutions, activ ities of others and situations, 2) “the meaning of such things is derived from, or arises out of, the social interaction that one has with others”, and 3) “these meanings are handled in, a nd modified through, an interpretive process used by the person in dealing with the things he [or she] encounters” (p. 2). Chenitz and Swanson (1986, pp. 6-7) sugges t that the symbolic interactionist perspective has three implications for research activity. Firstly, human behaviour must be examined in interaction; moreover, th e setting, the implicati ons, and the social forces are analysed. Secondly, the researcher needs to learn the participants’ world and understand their behaviour as the participants understand it. The researcher has to “take the role of the other” and understand the world from the participants’ point of view. Lastly, the researcher has to translate the meaning derived from the participants into the language of the research discipline in order for the knowledge to be understood and accepted. While the research disciplines of Mead and Blumer were social psychology and sociology respectively, social interactionism and grounded theory methodology have been utilised by a range of disciplines including nursing. 3 . 4 USEFULNESS OF GROUND ED THEORY TO NURSING Grounded theory is useful for nursing practi ce because it enables the development of a substantive theory of human behaviour within a particular social context. The methodology is useful for exploring the ric hness and diversity of human experience 38 and contributes to the development of middle-range theories in nursing (Carpenter, 1995; Morse, 1991; Streubert & Carpenter, 1995; Wuest, 2007). By using a grounded theory approach, researchers of nursing can identify the bases of informants’ experiences, and incorporate the findings as a basis for action ( Wuest, 1995). Thus, grounded theory methodology was considered to be an appropriate approach to explore the ways that Thai people with HIV/AIDS take care of their health and manage their lives in the contex t of stigma and discrimination. 3 . 5 ETHICAL CONSIDERATIONS This study involved human lives. Thus, the research proposal for this study, including the information sheet and participant consent form, was approved by Massey University Human Ethics Committee (MUHEC: PN Application 04/ 186) and the research committee of Mahasarakham Hosp ital, Mahasarakham province, Thailand (Application MHA: MK 0027.2/ 9079) before da ta were collected. A permission letter to conduct the study in Mahasarakham Hospital was also obtained from the Hospital Director (Appendix A). Protection of human subjects is essential in the conduct of research. Individuals have the right to self-determination. This means that they have the right to be informed about research in which they participate (Streubert & Ca rpenter, 1995). In this study, a complete explanation and written description about the purpose, the method, the potential risks and benefits of participation and the protection of confidentiality were given to each participant who met the criteria for participation (Appendix B). The participants were given opportunities to ask questions a nd decline, or agree, to participate in this study. Participants who agreed to participate were asked to sign a consent form (Appendix C). Both the information sheet and consent form were translated into the Thai language for participants. Interviews were conducted at sites that prot ected each participant’ s confidentiality and were convenient for participants. All data, held in the form of audiotape recordings, transcripts, field notes and computer disks, were coded to protect participants’ identities and to record the date of the interaction. For example, the code (A: 39 13/02/0 5 ) indicated the name (A) of a participant who was interviewed on 13 th February 2005. Codes have been used in the writing up of the data chapters. No real names have been used in any publications or reports of this study. Data are stored anonymously in a locked file cabinet at the Faculty of Nursing, Mahasarakham University, Mahasarakham Province, Thaila nd, and retained for five years from completion of the study. Then, all interview ta pes and information will be erased. As a result, ethical considerations should ensure that participants and their families are not physically or emotionally harmed as a result of their participation in this research. 3.6 SELECTION OF THE STUDY SITE Mahasarakham province was selected as the site for this study primarily because of ease of access, and my work experience, outlined in Chapter One, with people living with HIV/AIDS in rural Northeast Thaila nd who struggled to follow health advice because of low education and poverty. 3.6.1 Mahasara k h a m provi n c e Mahasarakham province is located in th e heart of Northeastern Thailand. The northeast region is the poorest of the four regions of Thailand because it does not attract rich businesses or industries (Mahasarakham Hosp ital, 2006a). Mahasarakham province covers an area of approximately 5,291 square kilometres. It shares boundaries with five provinces, is located on the Korat Plai n just above sea level and is without major hills or mountains (Fi gure: 3-1). Mahasarakham province remains primarily a farming region; approximately 75% of the land is used for growing rice and other crops including cassava, sugarcane, tobacco, peanuts, soybeans, jute, vegetable plants and fruits. The distance from the capital, Bangkok, to the main centre in Mahasarakham province is 470 kilometres by air-conditioned bus; a trip that takes about 7.5 hours. It is also possible to reach Mahasarakham by train or plane via Khon Kaen, then travelling one hour on a bus. The weather in Mahasarakham is subtropical and semiarid with three seasons: hot, rainy, and cold. 40 Figure 3-1: Map of Mahasarakham Province Mahasarakham’s population of 947,313 is composed of 466,700 males, and 480,613 females (Mahasarakham Hospital, 2006a). The province is divided into 11 districts ( Amphur ) and two minor districts ( King Amphur ) , 133 sub-districts ( Tambon ) , 1,934 villages ( Mubaan) and 228,659 households. 41 Many young people migrate to larger cities in Thailand for work. Urbanisation and modernisation result in separation of people from their families when they seek work in large cities because of poverty. This results in a potential for more sexual activity with commercial sex workers. Migration is s een as an important factor in the spread of HIV/AIDS across the nation. Migrant workers are at incr eased risk of contracting HIV/AIDS because of inaccessibility to information and health services (Phoolcharoen, 2005; UNAIDS, 2004). Furtherm ore, in order to ensure their economic survival, some women become invo lved in sex work (Caballero, Dreser, Leyva, Rueda, & Bronfman, 2002). This finding has held true in several provinces of the Northeast including Mahasarakham. HIV/AIDS is a significant issue in Mahasa rakham province. From the year 1990 to 31 December 2006, the cumulative number of people living with HIV/AIDS in Mahasarakham province was 2,624 cases and th e number that died from AIDS was 324 cases. Males with HIV/AIDS outnumbered females at a ratio of 2 to 1. Eighty- two percent of cases of HIV/AIDS were in the age range 20-39 years. Heterosexual transmission accounted for 86% of cases, 6% were newborn babies infected from their mothers, and 4% were intravenous drug user s. The highest prevalence of people with HIV/AIDS was found in Amphur Muang (22%), the main urban area of the province (Mahasarakham Provincial P ublic Health Office, 2007). 3 . 6 . 2 Mahasara k h a m Hospi t a l Mahasarakham Hospital was selected as a site from which to recruit participants because it is a large public healthcare institution that provides services to clients from both urban and rural areas of Mahasarakham province and the nearby provinces. The hospital provides healthcare services for people living with HIV/AIDS at an HIV/AIDS day care clinic ( Ban Rom Yen - Cool Shade House ) which provides services between Monday and Friday from 08.00 a.m. to 4.00 p.m. The services consist of a counseling service, medical serv ice, socioeconomic service, and a psychosocial service for supporting people with HIV/AIDS to confront their problems and take care of themselves. People with HIV/AIDS are more likely to go to the general hospital than to other community hospitals because this hospital provides 42 easy access to individuals from every part of the province, especially since they can access the HIV/AIDS health care service directly. Figure 3-2: Mahasarakham Hospital There were approximately 700 patients us ing services at the HIV/AIDS day care clinic in the fiscal year 2005 (Mahasara kham Hospital, 2006b). Mo reover, the clinic keeps HIV/AIDS health records separate from other patient health records; this protection of privacy is regarded as important by people with HIV/AIDS. People with HIV/AIDS normally come to the HIV/AIDS day care clinic on Monday by appointment in order to have a physical check up from the physicians, and to obtain prescriptions for antiretroviral and/or other medications. They also seek and receive advice about other problems from a range of healthcare providers (doctors, nurses, pharmacists and laborat ory technicians) and their friends. Some participants join in activity groups such as exercise groups, or c ounselling groups. Furthermore, 43 they can share their experiences with their friends who are in the same situation in order to learn alternative strategies to apply in their daily lives. 3.7 PARTICIPANT SELECTION The participants in this study were 30 Th ai people with HIV/AIDS (twelve males and eighteen females) selected from patient s who lived at home and attended the HIV/AIDS day care clinic at Mahasarakham Ho spital. Initially three participants were recruited purposively from the HIV/AIDS day care clinic. The criteria for selecting participants included people who: 1) were diagnosed with HIV infection by having a HIV-seropositive test, 2) accepted that they were HIV infected persons, 3) were able to communicate in–and understand–the Th ai language, and 4) were willing to participate in the study. Subsequent partic ipants were selected by snowball sampling, or by theoretical sampling that was based on questions arising from earlier data collection and analysis, in order to add further understanding of the phenomenon. 3 . 7 . 1 Recruitm e n t proces s After receiving ethics approval and permission from the hospital director to access participants and health records from the HIV/AIDS day care clinic, I contacted, and provided information about the study to, the health professionals who worked at the clinic. A head nurse who had worked with people with HIV/AIDS for more than 10 years assisted with making the study known to potential participants. I approached patients with HIV/AIDS directly, introduced myself and talked generally about the study, then asked whether they would be wi lling to discuss participation in it. I explained the information sheet and partic ipant consent forms (see Appendices B and C) to potential partic ipants who expressed interest, a nd I answered questions about the study until they were satisfied. When patients with HIV/AIDS agreed to participate in the study, I asked them for permission to visi t them and their family members in their own homes. Participants were asked to sign a written consent form and appointments were scheduled for interviews at a time and place that was convenient for each participant. Participants were asked fo r directions to their homes. Snowball recruitment occurred when I me t friends of participants, w ho were visiting from other villages, and they asked why I was not interviewing them. 44 3 . 7 . 2 Demograp h i c chara c t e r i s t i c s of the partic i p a n t s In this study, all of the participants were Buddhist. The partic ipants ranged in age from 27 to 48 years with an average age of 36 years. Twenty participants were married with HIV/AIDS (10 couples), si x participants were widowed, two were divorced and two were single. Twenty-thr ee participants had children, none of whom were HIV positive. The education level of the participants was low. Twenty-six participants had completed primary school (grades 1 to 6), while four participants had completed secondary school (grades 7 to 9). In the pa st, only primary education was compulsory (grades 1 to 6). Since 2004, attending school through grades 1 to 9 has been compulsory. All of the male participants, and four women who accompanied their husbands, had previously moved away from Mahasarakham province to a large Thai city to find work. Once they contracted HIV/AIDS and we re unable to retain their work in the city, they returned to their home village s in Mahasarakham province. Twenty-nine participants reported being infected with HIV by sexual transmission. Only one participant reported being infected with HIV by intravenous drug use. At the time of participation in the study, 14 participan ts were unemployed. Sixteen participants were employed, the majority of these as employees in unskilled work in construction, cleaning, and sewing. Some participants were employed by the HIV/AIDS day care clinic as “volunteers”. Four participants were self-employed as farmers or barbers. Eleven participants had a total monthly income of 1,000 to 2,000 baht, ten participants earned more than 2,100 to 4,000 baht, while five participants had a total monthly income over 4,100 to 5,000 baht, and four participants had no income. Twenty participants had a total household monthly income over 5,100 baht, whereas ten participants had a total household monthly income of less than 5,000 baht (an exchange rate of 27 baht equal to NZ $ 1). Most participants (24 cases) lived in extended families that included spouses, parents, sisters, brothers, and other family members, while four participants were in a nuclear 45 family. Two participants lived alone, although both reported they had support from their sisters, brothers or neighbours who lived nearby. Twenty-six participants lived in rural villages spread across seven districts (Amphur), while four participants (two couples) lived in the city (Amphur Muang). 3 .8 DATA COLLECTION In grounded theory methodology, the collection of data does not finish until the end of the research because ideas, concepts a nd new questions continually happen which guide the researcher to new data sources. The researcher gathers data from first interviews or observations and then uses the initial emerging ideas to develop further interviews and observations. This means that the gathering of data becomes more focused and specific as the process develops (Holloway & Wheeler, 1996, p. 102). Data collection ends when no new informa tion is forthcoming about a category or group. Data collection and data analysis are conducted simultaneously until theoretical saturation is achieved (Stanley, 2006). That is, no new categories of data emerge from the sample (Glaser, 1978; Glaser & Strauss, 1967). 3 . 8 . 1 Data colle c t i o n metho d s In this study, data collec tion methods included in-dep th interviews, participant observations, field notes made during home visits, reviewing health records in the clinic and theoretical sampling. All participants preferred to be interviewed at their own homes because they wanted me to visit them at home, and they did not want to travel since it was not convenient for them. In this study, the data collection period lasted approximately eleven months, from February, 2005 to December, 2005. The following sections detail these processes. 3.8.1.1 In-depth interviews In-depth interviews were used in the study to collect data from people with HIV/AIDS and their family members who cared for them. The in-depth interview technique was suitable when I knew most of the questions to ask but I could not predict answers from the participants. Additionally, in-depth interviews were very helpful to me in 46 gaining all the information that I require d. This interview technique also enabled participants to answer the questions freely (M orse & Field, 1996). At the beginning of this study, the interview questions were designed to first seek general information. For example, about th e participants’ daily activities such as “what are you doing?” and then move on to the specific topics about their self-care perceptions and practices that the participants themselves may have initiated. For instance, “Tell me about your disease”. “How do you feel about living with HIV/AIDS?” “How do you manage yourself in your daily life?” and “How do you care for yourself”? The interviews were audio-re corded, with the participant’s permission, to capture the particip ant’s interview word-for-word. The most common type of interview is the individual face-to-face interview (Denzin & Lincoln, 2003; Fain, 1999; Gr bich, 1999). For the most part, participants were interviewed alone, and appeared to feel comfortable and relaxed. Some women participants had their spouses sit near them so that it made them feel comfortable and able to answer the questions more fr eely. Only one man and one woman showed discomfort when I interviewed them, becau se they thought this disease made them suffer from their physical symptoms, social disgust and stigmatisation. Thus they did not want to talk about the disease in the first interview, but in the second interview both participants felt comfortable with my questions and enjoyed talking with me. Morse and Field (1996) suggest that conducting short interviews many times is more effective than conducting a long one once. In this study, each participant was interviewed in the Isaan langua ge at least twice, approximately 45 to 90 minutes each time. However, I spent approximately between one and three hours each time with participants and their families in order to establish and maintain rapport and mutual relationships with the participants. It was relatively easy to establish mutual interaction as I had supervised nursing st udents in many villages in the community and was, therefore, known to people in the villages. 47 3.8.1.2 Participa n t observ a t i o n The key element in participant observation is involvement with participants in their natural setting and participating in their lifestyle activities (Fain, 1999). During the data collection phase I sometimes participat ed with people in the community activities such as a wedding ceremony, re ligious activity and the Ne w Year festival. When I visited participants in their own homes or their fields, I brought food, fruit, milk and clothes to them. Moreover, I helped them by cooking food and collecting vegetables and having lunch or dinner with them in their houses to gain rapport. After I had lunch or dinner with participants or with the participants’ families they felt comfortable and happy because they felt that I was not di sgusted by them. In return, people with HIV/AIDS and their family members gave me vegetables and fruits. This meant that participants and I displayed spirit (namjai) for each other. Spirit is an important element in the Thai cultural context. Participant observation was also used to collect data during the interviews and home visits. I would observe social interactions between people living with HIV/AIDS and their families, self-care actions/interactions, behaviours, feelings, events, and surrounding participants, during interviews . For example, I interviewed one woman participant at her house. I observed the events: When she talked about her hus band, she kept quiet and bent her head for 3 minutes and starte d crying. She cried and cried because she feared the symptoms would happen with her. She said her life is uncertain, she feared of death like her husband. She knew this disease cannot be cured. May be she would not live longer. I stopped the intervie w because she was crying. Her face looked sad, serious, and unhappy. After she cried she looked at me then I touched her and persuaded her to go outside and talked about the weather until she was okay. After that we walked back to her home… (C: 15/02/05). 48 3.8.1.3 Field notes In qualitative research, field notes are a necessary database (Yin, 1989). Field notes are used to record information of observations, interactions, s hort conversations or descriptions of events after every trip into the field (Glase r, 1978; Morse & Field, 1996). In this study, field notes were used to record general information about participant observations, in-depth interviews, home visits and other activities throughout the study. For example, I took notes about the family members’ interaction with people living with HIV/AI DS and their behaviours. The participant and his family (mother, father, sister, and brother in-law) are having the even ing meal. They sit in a circle around sticky rice containers and dishes of fish, vegetables, fermented fish and chilli sauce. Small balls of sticky rice are kneaded between the fingers and then dipped into the dishes and they use their fingers to catch the fish and vegetables, then put these in their mouths. After they have finished the meal, they wash their hands and drink water. Everyone enjoys eating the evening meal. They said to me that these meals are very delicious (zap zap)… (A: 13/03/0 5 ) . As a result, I used field notes to formulate a context for analysis and interpretation of this study. 3 . 8 . 1 . 4 A review of health records With the permission of participants, I revi ewed their health records at the hospital clinic. This review provided data about CD4+ T lymphocyte counts, prescribed medications and body weight. The length of time that participants had been diagnosed with HIV/AIDS ranged from less than 1 y ear to 15 years. The mean length of time since they were first informed that they were HIV-sero-positive was 7.1 years. The CD4+ T lymphocyte counts, when participants first presented at the hospital and were diagnosed with HIV/AIDS, ranged from 0 to 643. Ten participants had CD4+ T lymphocyte counts of more than 200 cells /µl whereas 20 had a CD4+ T lymphocyte count of fewer than 200 cells /µl. I noted th at the level of CD4+ T lymphocyte counts 49 of most participants (20 cases) tended to ri se after access to the healthcare service and antiretroviral medications, and their body weight increased. As a result, most participants viewed this healthcare as important to their self-care management. Nine participants were able to maintain their CD4+ T lymphocyte level higher than 200 without antiretroviral medication, because they took good care of their health. One participant with a CD4+ T lymphocyte count of less than 200 did not want antiretroviral medication, but was healthy because he took good care of himself and avoided risky behaviour such as smoking cigarettes, drinking alcohol and having unprotected sexual relations. 3.8.1.5 Theoretical sampling Glaser (1978, p. 36) stated th at “theoretical sampling is th e process of data gathering for generating theory whereby the analyst jointly gathers, codes, and analyzes his data and decides what data to gather next and where to find them, in order to develop his theory as it emerges”. In the grounded theory approach, the theoretical sampling technique is used to guide the investigator to look for categories or concepts and relationships of concepts, rather than check ing distributions of the concepts (Glaser & Strauss, 1967; Glaser, 1978, 1992). As the study progressed, categ ories emerged and HIV/AIDS people were recruite d, who could give data on ev ents or examples of each category and its properties. For example, in thinking about sources of social support and its impact on self-care, I noted that two participants, who worked as HIV/AIDS volunteers, received care of a high qua lity and funding support for their primary school-aged children (about 6,000 baht per y ear from the Thai government) because a nurse offered the project to them. Theoretica l sampling was used to locate participants who had children but who were not eligible to receive funding from the Thai government to support their children in order to further understand the concept of seeking support. 3 . 9 DATA ANALYSIS In this study, the goal of data analysis was the discovery of basic social psychological processes, not a description of phenomena. Th e process of data analysis includes first coding substantively. Each fi eld note, transcription, or document is read line by line 50 with the questions, and the coding, analysis of data and theorising would take place simultaneously (Glaser & Stra uss, 1967). The audiotaped Isaan language interviews were transcribed verbatim, then I translated them into standard Thai language with the help of a colleague who could speak bot h Thai and the Isaan language, and had experience in qualitative research. I later translated the Thai transcripts into the English language. In order to ensure the accu racy of the English translated version, I also discussed and improved the content and meaning with a New Zealander who has been in Northeastern Thailand. Printouts were used for coding of categories which reflected the meanings of what was happening in the data. In grounded theory, data collection and analys is occur concurrently and are based on constant comparative analysis (Glaser & Strauss, 1967). This method involves comparing incidents, participants or segmen ts of data within and between groups in order to generate categories, concepts or hypotheses relevant to the study area. This is intended to promote the identification of the properties of categories and also of the links and relationships between categories (Glaser, 1978). I conducted the preliminar y data analysis in the field. On my return to New Zealand, that analysis was reviewed with the help of my supervisors, anot her visiting lecturer and a doctoral student who was also using the Glaserian gr ounded theory method. This group met a number of times over a period of months to discuss the interview data and draft analysis. Each member proposed her own idea about concepts, and categories that overlapped, and some concepts and categories were collapsed. In this process, concepts were renamed, additionally collapsed, or linked differently (Wuest, 2007) until revised categories and a core category, or basic so cial psychological process, were identified. 3 . 9 . 1 Coding proce s s Coding in grounded theory involves conceptualising data by constant comparison of incident with incident, and incident with category to generate many categories, and their properties (Glaser, 1992). In Glaserian grounded theory, there are three significant types of coding: 1) open coding or substantive coding; 2) selective coding and 3) theoretical coding (Glaser, 1992). In grounded theory, coding means to 51 conceptualise the data by analysing it and identifying patterns or events in the data. Coding initiates the process of theory development (Charmaz, 2000; Glaser, 1978). 3.9.1.1 Open coding Open coding is the process of breaki ng down, examining, comparing, conceptualizing, and categorising data (Glaser, 1992). Open coding, also called substantive coding , was done to fracture the data so that categories, along with their properties and dimensions, could be identified. An example of open coding is shown in Table 3.1. The following (translated) tr anscript excerpt show s both the open coded data which I generated, and those I generated from the s ubstance of the data of one woman participant, who was a housewife and believed in religious practices. Table 3.1: Open Coding Transcript excerpt from data Open coding I know that the Buddhist religion teaches people how to be good, so I like to make merit. I go to the temple every holy day to offer food to the monks and to listen to them teaching from the scriptures. I practise ancestral worship and the maxim which my mother taught me – “tum dee, dai dee; tum chua, dai chua” (do good and you will receive good; do evil and you will receive evil). Buddhist religious teaching is like this. I pray before the Buddha image every night for well-being, no pain or sickness and for a long life with my family. After making merit and praying, I feel well in my mind and I sleep well. I believe that in the next life I will be rich, healthy and happy… (Q: 06/0 5 / 05 ). Buddhist religion teaches people to be good Making merit, Temple activities Offer food to the monks Listen to monks teaching from scriptures Practising worship Do good and you will receive good Do evil and you will receive evil Buddhist teaching Pray to Buddha image for well-being No pain, no sickness After making merit and praying Feeling well in mind and sleeping well Belief in the next life Will be rich, healthy and happy Open coding is later recoded at a more analytic level termed theoretical coding . 52 3.9.1.2 Theoretical coding Theoretical codes conceptualise how the open codes and categories associated with each other are developed as an hypothesis to be integrated into a theory (Glaser, 1978, p. 72). Glaser (1978) presents a series of 18 theoretical coding families that include analytic categories such as his “six Cs: Causes, Contexts, Contingencies, Consequences, Covariances, and Conditions” (p.74). Glaser’s coding families indicate a specific analytic category, but merge c onceptual distinctions. For example, I labelled (coded) these actions as “religi ous practices” and “attention to, and concern about, medications”. The following example describes open coding and theoretical coding in Table 3.2. Table 3.2: Theoreti c a l Coding Open coding (substantive coding) Theoretical coding Making merit Temple activities Praying to Buddha image Concerning the time of medicines Concerning the amount of medicines Concerning the side effects of medicines Religious practices Attention to, and concern about, medications Coding is the first part of analysis which encourages insight and theoretical possibilities. Coding gives a primary set of ideas encouraging the exploration and examination of theory. 3.9.2 Theoreti c a l memoi n g Theoretical memos are the way of preserving emerging ideas and hypotheses about data analysis (Stanley, 2006). Researcher s keep track of theoretical ideas and continuously link and build on the formula tion of theory (Glaser, 1978, 1998; Strauss & Corbin, 1998). Memoing is used to raise the data to a level of conceptualisation (Grbich, 1999, 2007) and to lo cate the emerging theory within existing relevant 53 theoretical frameworks. Writing memos is a cr ucial part of the process for developing grounded theory that begins when first coding data, and continues through the reading of memos or literature, sorting and writing pa pers until the end, in order to organise the ideas about self-care in HIV/AIDS (Glaser, 1978; Grbich, 1999, 2007; Stanley, 2006). An example of an early memo about particip ants who had not disclosed their situation to others that I wrote to identify the ma jor concept of ‘being HIV/AIDS’ is outlined below: Excerpt from memos: At first, when he knew he and his wife had HIV/AID S . He and his wife did not tell other people that they had HIV/AID S (e.g. ref: D, R). They said to me that nobody knew about them - only their lecturer (researcher-me) knew . They have not disclosed their situation to their neighbours and community. They are afraid and do not know what disaster coul d happen to their family. They keep it secret in order to protect themselves and maintain a living. They keep the front door shut but open the back door. The ventilation is poor and it is quite dark inside and untidy. But they look happy with their family and said that this is normal for them (e.g. ref: D, R). In addition, writing a memo can help the researcher to explore ideas about categories. Theoretical memos serve to firm up the data and final analysis. 3 . 9 . 3 Basic socia l proce s s The basic social process (BSP) is only one t ype of core category considered to emerge or to be discovered in grounded theory study (Glaser, 1978, 1996). A process is something that occurs over time and involves change. “BSPs are theoretical reflections and summarizations of the patte rned, systematic … fl ows of social life … 54 which can be conceptually “captured” and further understood through construction of BSP theories” (Glaser, 1978, p. 100). Glaser (1978) describes two types of basic social processes: a basic social psychological process (BSPP) and a basic soci al structural process (BSSP). A “BSPP” refers to a social psychological process such as becoming, highlighting, personalising, health optimising, gi ving the feeling of process, ch ange, and movement over time. A “BSSP” refers to a social structure in the pr ocess of growth or deterioration processes such as bureaucratisation, debureaucratisation, centralisation, routinisation, admitting, or recruiting procedures, and succession. A B SSP is the social structure within which the BSPP process occurs. To understand th e basic social process involved in a grounded theory study, it is helpful to first view it as a core category (Fagerhaugh, 1986, p. 135). As Glaser (1978, p. 93) states “the goal of grounded theory is to generate a theory that accounts for a pattern of behaviour, which is relevant and problematic for those involved”. A core category is called a core variable, and explains a wide range of behaviour and inte raction. In this stu dy, “from experiencing social disgust to passing as normal” was viewed as a progressive movement process involving four phases; 1) being HIV/AIDS; 2) making choices; 3) keeping well; and 4) feeling empowered. Figure 3-3 outlines the detailed four phases of the theory (BSPP). It is shown to illustrate interactive dynamic processes. From Experiencing Social Di sgust to Passing as Normal Being HIV/AIDS Making choices Keeping well Feeling empowere d Figure 3-3: Basic Social Psychological Process and Core Categories 55 3 . 10 TRUSTWORTHINESS The researcher is concerned to preserve trustworthiness through the process of gathering and analysing data. As qualitat ive research methods are essentially subjective in nature and loca l in scope, procedures for assessing the validity of research are quite different from those used for experime ntal study. Lincoln and Guba (1985) have provided a common set of criteria for establishing the validity of qualitative research. They suggest that because there can be known objective measures of validity, the underlying issue is to identify ways of establishing trustworthiness, the extent to which we can trust the truthfulness or adequacy of a research project. They propose that establis hing trustworthiness involves procedures of credibility, transferability, dependability, and confirmab ility. These criteria were used as guidelines to assess the trustworthiness of this research study. 3 . 1 0 . 1 Credibil i t y Credibility relates to the trustworthiness of the findings (Carpenter, 1995) and credibility of qualitative research is achieved when it reveals accurate descriptions of individuals’ experiences, and when the people having that experience would immediately recognise it from those descriptions as their own (Sandelowski, 1986). Lincoln and Guba (1985) identified cred ibility as an overriding goal of qualitative research, reflecting the relativistic nature of truth claims in the interpretivist tradition. Credibility includes activities which increase the probability that credible findings were produced (Lincoln & Guba, 1985). One of the best ways to establish credibility is through prolonged engagement with the subject matter. Another way to confirm the credibility of the findings is to return to the participants and see whether or not they recognise the findings to be true to their experience. Lincoln and Guba call this activity member checks. In this study, the four methods; prolonged e ngagement, triangulati on, peer debriefing, and member checks were used to enhance th e credibility of the data gathering and analysing. Firstly, I established good rappo rt with participants by prolonged engagement with them until trust was built before gathering data. The participants were interviewed at least twice; some partic ipants were interviewed more than twice. 56 As the participants felt acquainted with me, they felt more comfortable to share with me their experiences of managing and living with HIV/AIDS. Secondly, triangulation of different data co llection modes was carried out in this study. Interviews, observations, field notes, an d a review of health records taken by me were used to cross-check and verify the emerging interpretation and to increase the credibility of the findings. I concluded the findings in accord with the empirical data, not pre-existing theor y, by collecting adequate data and using the triangulation approach across different data sources (participants, family members, health records, head nurses), data settings (HIV/AIDS day care clinic and participants’ home) data gathering methods (interviews, observations, field notes, review of health records), and data analysis (researcher, supervisors, PhD students). Thirdly, peer debriefing refe rs to an activity that provided an external check on the inquiry process. In this study, peer debriefing involved three uni versity professors who were experienced in the qualitative re search method. They read the findings and confirmed or questioned the codes, concep ts and categories. This peer review occurred many times during the data analysis process and provided me with opportunities to reflect on, and e xplore other interpretations. Finally, I implemented informal member ch ecking for data and preliminary findings by re-interviewing three participants. Duri ng the data collection phase, a summary of each previous interview was described to the participants during their next interview. I corrected any errors in the interview data after discussing them with these participants. During a return visit to Thailand, I describe d the analytic categories in the self-care process of Thai people living with HIV/ AIDS: being HIV/AIDS , making choices, keeping well, feeling empowered and the basic social psychological process of moving from experiencing social disgust to passing as normal, to some participants. These participants agreed that these categories and the basic social psychological process were consistent with their thoughts about their situation. 57 3 . 1 0 . 2 Transferab i l i t y Transferability , the alternative term for external validity and generalisability, means that the findings in one context can be transfe rred to similar situations or participants. Lincoln and Guba (1985) also suggest that researchers use thick description and that they describe accurately and in detail the data in their context so that peers and readers have a clear picture of what is going on. Through purposeful sampling, rich and specific information is obtained. In grounde d theory the notion that the substantive theory must “fit” and “work” and be modifiable is consistent with the notion of transferability. 3 . 1 0 . 3 Dependabi l i t y Trustworthiness also depends on the extent to which observers are able to ascertain whether or not research procedures are adequate for the purposes of the study. Where insufficient information is available, or av ailable information indicates the likelihood of superficial and/or limited inquiry, they will not feel that the study is dependable. The dependability of research is achieved through an inquiry audit whereby details of the research process are revealed (Lin coln & Guba, 1985; Stringer & Genat, 2004). The detailed description of the study design and methods in this chapter enables the reader to assess the adequacy of the research procedures. 3.10.4 Confirmability Confirmability is achieved through an audit trail, the inquirer having retained recorded information that can be made available for review. These include raw data such as field notes, photographs, diary entries, original and annot ated documents, copies of letters, and materials generated at meetings. They also incl ude data reduction, analysis products, and plans and reports derived from the study. They enable participants or other observers to confirm that the research accurately and adequately represents the perspectives presented in the study. This means that they enhance the trustworthiness of the study (Lincoln & Guba, 1985; Stringer & Genat, 200 4). In this study, data are stored anonymously and securely for five years to allow for audit. Quotations of the participants’ statements are reported appropria tely and adequately to demonstrate that the findings were grounded in events rather than being the researcher’s personal constructions. 58 59 3.11 CONCLUSION In this chapter, grounded theory met hodology was reviewed as one qualitative research methodology that has been used in researching situations of social interaction in nursing, leading to theory developmen t in nursing (Chiovitti & Piran, 2003). The process of this research, and methods used to analyse the data have been described. The inductive nature of the method is supported by the attention given to allowing theory to emerge from the data. In the follo wing chapters, the analysis of the findings is reported, beginning with the category: Being HIV/AIDS . PART TWO CHAPTER FOUR BEING HIV/AIDS 4.1 INTRODUCTION This Chapter is the first of four data Chapters in Part Two, which construct the model of self-care captured in the basic soci al psychological process (BSPP) “from experiencing social disgust to passing as normal”. “Being HIV/AIDS” is the first of the four core categories derived from the data that explains the initial experiences of the participants, and is introduced in this ch apter. The other three core categories that contribute to the model are “making choices”, “keeping well” and “feeling empowered”. These categories are addressed in Chapters Five, Six and Seven respectively. Figure 3-3 shows the four co re categories and the relationship between these core categories and the basic social psychological process, generated from the grounded theory analysis. In this chapter, I present the core category “being HIV/AIDS” . The stage of being HIV/AIDS occurred as all participants liv ing with HIV/AIDS fi rst experienced their new identity as a person with HIV/AIDS . The perspectives of being HIV/AIDS varied. Most of the participants had h eard the words HIV and AIDS from radio, television and from people in their community talking about the disease. Some had personal experiences of people with HIV/AIDS because their husband or wife had died from the disease. Moreover, most of the participants understood HIV/AIDS as a disease that is roke tid tor (communicable), nah klua (fearful), nah la ay (shameful), ruk sa bor souw (incurable), and taay wai (expect to die soon) . In addition, it was rungkiat – a disease of social disgust. All participants reported that these words hurt their feelings and affected their life. In this study, the category “being HIV/AIDS” was supported by four concepts including being diagnosed with HIV/AIDS, being stigmatised, suffering, and learning about HIV/AIDS . These concepts were identified by exploring the meaning, 60 to participants, of having HIV/AIDS and their early experiences in managing and living with their HIV/AIDS (Figure 4-1). Each concep t and code will be presented as separate, even though–in fact–they are related. Being diagnosed with HIV/AIDS > Experiencing symptoms >Incurable >Expect to die soon >Communicable Being HIV/AIDS Discovering the meaning of having HIV/AIDS Suffering >Fear and shame >Loss of finance Being stigmatised >Getting visible signs >Samson >Social disgust Learning about HIV/AIDS >Family >Media >Health professionals Figure 4-1: Core Category-Being HI V/AIDS, Concepts and Codes. 4 .2 BEING HIV/AIDS: Being diagnosed with HIV/AIDS Being diagnosed with HIV/AIDS referred to the participants’ expe riences of learning from their healthcare provider, following a blood test, that they had HIV/AIDS. The blood test accurately gauges CD4+ levels and viral load levels, thus it reveals the 61 most important criteria used to confirm HIV/AIDS (Bartl ett & Finkbeiner, 1998; Stine, 1996). After participan ts received the diagnosis, th ey began to accept the fact that they really had HIV/AIDS. Some par ticipants had initially suspected they had HIV/AIDS when they observed signs and symptoms that appeared on their body. Others were diagnosed when they were admitted to hospital for treatment of opportunistic diseases such as pulmonary tuberculosis (TB), fungal meningitis, or pnuemocystic carinii pneumonia (PCP). The concept of “ being diagnosed with HIV/AIDS” was supported by codes including e x p e r i e n c i ng sympto m s , incura b l e , expect to die soon, and communic a b l e . 4 . 2 . 1 Experienc i n g sympto m s When HIV infected persons changed from asymptomatic to symptomatic illness, they experienced distress and discomfort and sought help from the physician and others to maintain their health. For example, one participant stated: I got white patches in my mout h, I couldn’t eat, and it hurt my mouth. I lost weight, was thin and fatigued and couldn’t walk. My friend took me to the community hospital; I was admitted for 2 weeks with AIDS-related symptoms…. My immunity was low, (CD4 + was 1)…. I had to take antiretroviral drugs…to control the HIV virus… (P: 17/02/ 0 5 ). The majority of the participants (20 cases ) recognised the symptoms of HIV/AIDS by themselves. However, some participants did not recognise the relationship of their symptoms to HIV/AIDS until they became seriously ill and were admitted to the hospital for treatment of other opportunistic illnesses; eventual ly the diagnosis of AIDS was confirmed as illustrated below. I got lymph node tuberculosis with an abscess at the neck area . When I was discharged, I t ook antipulmonary tuberculosis and paracetamol medications to treat the symptoms but I did not feel better…. I got serious headaches, I could not sleep and was unable to eat, I was very thin, I lo st 15 kilograms since I got sick, I felt hopeless and distressed, and I was scared of dying. I was 62 admitted again, and had a blood test (CD4+ was 6). I was diagnosed with AIDS with fungal meningitis… (H: 18/02/05 ) . Some participants were depressed and shoc ked after they received the diagnosis of AIDS. As one participant explained: W hen I knew I had AIDS. I cr ied, was confused and lost consciousness. I could not sleep for a week. I could not explain. I did not know why I had AIDS… (AA: 26/ 05/06). On the other hand, some participants (9 case s) knew that they were susceptible when others in their families developed HIV/AIDS, and some loved ones had already passed away. They were concerned and suspected themselves because they knew that HIV infection and AIDS were communicab le disease without a cure, could be transmitted by sexual intercourse, and that they had had unsafe sex relations with their spouse; as one participant said: I got HIV from my first wife; I st ayed living with her for 5 years until she passed away in 2002 with AIDS-related pulmonary tuberculosis. After she died I we nt to have a blood test at the hospital and (was diagnosed) HIV positive… (F: 17/02/05). One woman participant was asymptomatic, but learnt that she had an HIV infection because of a blood test during pregnancy for routine VDRL and HIV testing. She said she got the HIV infection from her first hu sband who passed away with AIDS and her second husband was not infected with HIV at the time of her pregnancy. I knew I got HIV infection because of my pregnancy. I attended the antenatal care clin ic, I had a blood test and a nurse told me about the result of the blood test , that I was HIV positive (B: 16/02/ 0 5 ). As outlined in Chapter One, HIV/AIDS is characterised by a variety of disturbing symptoms such as fever, diarrhoea, fatigue, weight loss, pharyngitis, headache, herpes 63 zoster, oral thrush, cough, wasting, skin lesion, meningitis, pneumonia, tuberculosis, and depression. These symptoms vary in their degree of control, duration, and effects (Chapman, 1998; Corless et al., 2002; Desc hamps, Fitzgerald, Pape, & Johnson Jr, 2000; Spirig, Moody, Battegay, & Geest, 2005). Anxiety and depression are the most common psychological symptoms of HIV-infected person s and are reported to be associated with raised symptom frequency and increased progression to AIDS (Cabaj, 1996; Hand et al., 2006; Ic kovics et al., 2001). Thus, th e experience of symptoms plays a key role in patients’ illness representation. 4 . 2 . 2 Incurable (ruksa bor souw) Most participants learned from the medi a, health professionals and their own experience that HIV infection and AIDS were disease that had no vaccine or medicine for a cure. I knew AIDS was not curable; ma ny people in the village talked about people who had AIDS must di e. I would become sick and die … (F: 17/02/0 5 ). AIDS is not curable, I knew from my experience and when my husband got AIDS, I saw how he su ffered from many symptoms until he died in front of my face… (I: 19/02 / 0 5 ). 4.2.3 Expect to die soon (taay wai) Most participants believed not only that AIDS was a fatal disease, but also that people who were infected would die soon. Most of the participants had seen people with AIDS die after a relatively s hort and severe illness. Thus, after the participants had been diagnosed with AIDS they felt hopele ss because of the severity of the AIDS disease. Most of the pa rticipants expressed the fear that they would “ taay wai” (die soon), “tong taay nae” (must die for sure) or were “ yaan taay” (afraid to die) when they were describing coming to terms with being HIV/AIDS. Some participants stated that: After I knew I got AIDS, in the first year, I was very afraid…afraid… to die because my condition was very severe, my 64 friends said that I must die and I saw that of the people who had AIDS around 5-6 people were alre ady dead after they got serious conditions in my village. My friends who got AIDS at the same time have died already… (K: 20/02/0 5 ). When I got serious illness, I was admitted at the hospital. I thought I must die for sure. I knew my disease is serious and death comes quickly, I have hear d from the radio about AIDS patients who must die for sure and I was afraid to die… (H: 18 /02/05 ). Moreover, some participants lacked knowledge about the disease. They also suffered from rejection by their families, community and society, who left them alone. As one participant woman described her husband’s illness: My husband got AIDS. I thought t hat he had to die for sure, because he did nothing. He just slept and waited to die…He was very skinny and he could not walk… (C: 15/02/05 ). In addition, when participants became sick th ey were no longer able to work, they had to leave their job and did not have any m oney. They could not get treatment in order to live longer because of poverty and misunderstanding about the disease. Nelson, Suriyanon, and Taylor (1994) reported that an adult dying of AI DS is ill for an average of eight months in Thailand. Untrea ted, AIDS is a highly fatal acute illness (Siegel & Lekas, 2002; Vithayachockitikhun, 2006). 4.2.4 Communicab l e (roke tid tor) People living with HIV/AIDS learned th e etiology of HIV/AIDS from multiple sources, including both hea lthcare providers and public media. Most of the participants received HIV/AIDS counselling from health professionals after they confirmed the diagnosis that they were HIV positive. They learnt that HIV/AIDS was caused by the HIV virus, and that it was transmitted through sexual relations, sharing needles with an infected person, blood transfusion, or from mother to child when an HIV/AIDS mother became pregnant, if they had not received antiretroviral medication 65 during their pregnancy to prevent the spread of the virus. While aware of the range of routes of transmission, most of the participants identified that AIDS was a disease associated with sexual contacts by having experiences with prostitutes. The doctor told me AIDS is directly transmitted by sexual relations, needle sharing with HIV/AIDS persons and from mother-to-child in a pregnant woman with HIV infection… (P: 06/03/ 0 5 ). AIDS is a “roke tid tor” (communicable disease) and it is transmitted by sexual intercourse with females who are bad persons or females who sell sex… (R: 24/02/ 0 5 ). While participants learnt how transmission of HIV virus occurred and how to prevent its transmission family caregivers, and Thai people in general, feared that AIDS could be spread to other people by close association. One participant said that: My mum did not eat meals with me because she feared contracting AIDS from me. She also left me alone (V: 17/05/05 ). This finding is supported by another Thai study, that suggests that some family caregivers recognised HIV/AIDS as very scary, dangerous, and a communicable disease (Maneesriwongul et al., 2004). 4 . 3 BEING HIV/AIDS: Being stigmatised Because HIV/AIDS is a serious disease a nd easily transmitted by sexual contact, people living with HIV/AIDS have to confront the stigma related to their social lifestyle. Thus, in this study, people with HIV/AIDS had to hide their status due to fear of bringing trouble upon their families and being socially unacceptable. The stigma of HIV/AIDS is a social cons truction, which seriously affects the life experience of a person living with HIV/AI DS and his/her family and community 66 ( Bhattacharya, Cleland, & Holland, 2000). A major reason why people living with HIV/AIDS are stigmatised is the associ ation of HIV/AIDS with the underlying stigmatisation of homosexual sex, and intravenous drug use (UNAIDS, 2005b). From this study, the concept of “being stigmatised” was supported by codes including g et t i n g visi b l e signs , “Samson” (p rom i s c u i t y) , and “sung k o m rungk i a t ” (soc i al disgu s t ) which were affected by the stigma. 4 . 3 . 1 Getting visibl e signs HIV/AIDS has recognisable signs and symptoms which are related to the illness, especially skin lesions, and oral fungal in fections. Moreover, other visible physical symptoms such as thinness, weakness, pale appearance, and weight loss may also indicate AIDS. Some participants were afraid that visible signs of HIV/AIDS would alert others to their condition. As a result, they might get into trouble because other people would be disgusted and refuse contact with them and their family. Especially, in the Isaan community HIV/AIDS was socially stigmatised. Before I got AIDS I feared AIDS patients because their body had skin lesions, facial rashes, weight loss, thin, dark skin, dry skin, oral fungus and they were unable to eat because it hurt their mouth and they were sleeping to die… (K: 06/03/05 ). Villagers often discussed with each other if they noticed their neighbours had an appearance of HIV infec tion, such as dry and dark skin, a rash or blister on any part of the body, or being skinny. Then they would avoid relating to those who had the look of an HIV infection (R ujkorakarn et al. 2000). 4.3.2 Samson (promis c u i t y ) When a person contracts HIV, his image becomes influenced by the common belief that AIDS is the result of promiscuity (samson). Thai people in general, and most participants in this study, perceived that HIV/AIDS comes from samson (promiscuity) although they knew of modes of HIV/AI DS transmission by sexual relations, exposure to infected blood, a nd perinatal transmission. Some participants explained that: 67 I view that other people still refused people with AIDS because they think people with HIV/AI D S are samson …like having sex with phu ying ha gin (sex workers and prostitutes) especially old people who have a bad attitude with people living with HIV/AIDS, I cannot change their be lief… it is difficult to say but they view HIV/AI D S persons as bad persons, because of…samson (promiscuity)… People just think only this way… (F: 27/02/05 ). When I got AIDS I did not want to tell any one except my family. I fear they hate me, I know people think that AIDS is fear and shame. Especially, I am a woma n I should not get AIDS…… I fear people look down on me and blame me that I am promiscuous or a prostitute. I am a housewife. I just stay home and sleep with my husband… (O: 17:04/05 ). The findings of this study in Northeast Thailand are consistent with reported findings from Southern Thailand, that AIDS was r ecognised as a disease without cure and a disease associated with promiscuity (rok sam son tang pate), mua pase (promiscuous sex) and mua kem (needle sharing), reflecting the so cial and moral approval of risky behaviours (Songwatana & Manderson, 1998). Generally, people in Thai society assume that people who contract AIDS are promiscuous. Women with AIDS were usually blamed as agents of transmission and were marked as samson (promiscuous). On the other hand, most HIV-infected men were socially perceived as victims of prostitutes, while women who had contracted AIDS from their husbands carried the shameful label of “bad woman” (Nilmanat et al., 2006; Songwatana & Manderson, 1998). In fact, most of the women participants in this study contracted HIV/AIDS from their husbands. But they were marked as samson and bad people by others in the community, as another woman participant commented: I am not a bad person… I am not samson tang pase…I rely on myself…. I am a good person; I stop thinking to get a new husband (laughing) because I do not like to be hurt again, I do 68 not want people to look down on me and blame me as bad person… or… samson…again…I did not do anything wrong… (C: 16/02/ 0 5 ). Most participants perceived that from th e Thai society point of view a person who visits prostitutes is a k hon leaw (bad person) and practises immoral behaviours as one male participant said: I accepted myself that I am a bad person because I usually liked to have sex with prostitutes when I worked in Bangkok until I got AIDS….Then my big brother took me back to my hometown to live with my mum and my sister’s family, I had a big problem with my health and I got mo re serious symptoms, I felt uncomfortable…. When I reached home I told my mum and my sister…. My mum was angry with me and blamed me that I was a bad person and was not responsible but my sister kept quiet, did not say anything…I accepted myself…I am a bad person (N: 17/05/ 0 5 ). Some participants described other families where their son and their daughter-in-law developed AIDS and stayed lonely without care and forgiveness from them. Moreover, the parents always complained about their son and daughter-in-law to others as being bad people. Their family didn’t understand and hat ed them, they viewed their son and daughter-in-law as bad people, mua pase…sok ka pok…(Promiscuous, dirty) (R: 24/02/ 0 5 ). 4.3.3 Sungk om rungkiat (social disgust ) Several of the participants expressed their view that HIV/AIDS is a disease of sungkom rungkiat (social disgust) especially if an AIDS person has visible signs on the body. This meaning of HIV/AIDS was bui lt from their own experience of living with HIV/AIDS in the Thai context. 69 A I D S is a disgusting disease as compared to other incurable diseases, such as Diabetes mellitus and Heart disease because those diseases had no nodules, pus and maculae on the body……but AIDS had…pus, nodul es…on the body…and skinny it is disgusting… (C: 16/02/0 5 ). Most of the participants de scribed rejection from many people around them. Fear of contamination was found to be a factor that led to discrimination, despite scientific evidence that AIDS cannot be transmitted vi a casual contact such as sitting next to people with HIV/AIDS, sharing a meal with people living with HIV/AIDS and using the same toilet. I knew that some people don’t accept me, especially my employer and his family. When th ey knew that I got sick from AIDS they didn’t come close to me. They told my sister to tell me not come to work with them … (A: 13 /02 /05). Some participants protected themselves from social disgust by hiding signs of disease, as one woman participant stated: I wear a long-sleeve shirt to hide my dark skin spots from other people, if they know I have it, pe rhaps they do not come close to me… (CC: 17/06/0 5 ). However, people still believe that there is the possibility of transmission from HIV/AIDS persons if they ar e close together. The negative perception of AIDS leads to substantial rejection and discriminati on against people living with HIV/AIDS and their families (Kilmarx et al., 2000; Phengjard et al., 2002). 4.4 BEING HIV/AIDS: Suffering Participants suffered when being diagnosed with HIV/AIDS because they perceived that HIV/AIDS is communicable, incurable and a fatal disease. Furthermore, it is 70 noted that the psychological suffering of HIV/AIDS persons might also result from mass media information which is displayed in negative ways. Some participants look healthy and they did not disclose their HIV/ AIDS status because they feared rejection and discrimination. Moreover, they were af raid of disappointing other people. Two participants stayed indoors, unwilling to meet other people in their village. As a result, participants found that the concept of “suffering” was supported by codes including f e a r and shame and loss of financ e . 4 . 4 . 1 Fear and shame Although the Thai media campaign has recently begun to carry more positive messages about HIV/AIDS, many people in Th ai society are still afraid of AIDS. Thus, the knowledge that Thai people rejected and stigma tised people with HIV/AIDS because they fear contracting the HIV virus, led to the participants feeling a variety of fearful apprehensions about the disease and shame about themselves. Some participants explained that: Before I got AIDS , I was a restaurant worker. I myself got a salary every month. Now I stop working because I was afraid someone would know that I have AI DS. I did not want the owner of the restaurant to know I had AIDS, I was ashamed. I feared that it would affect their busin ess. I resigned from work and helped my family doing some c hores at home… (C: 16/02/05). During the early stage, when I got AIDS, my parents and my sister were normally close to me but after I had nodules and maculae on the body, my mother and my sister were afraid. They didn’t take a meal with me, but they separated a meal for me because they were afraid to get a disease from me, via having food together… (K: 20/02/0 5 ). Some participants believed that AIDS disease could cause people to go blind. One woman participant said: 71 This disease could make people with AIDS blind. I do not know why? But I think the virus spread to their eyes…...Umm…it is fearful and severe…Now my husband has blindness due to the virus spread to his eyes…a doctor told me… (C: 16/02/0 5 ). Moreover, the participants felt anxious th at others may learn that they were HIV/AIDS sufferers. They did not dare to tell anyone about their HIV/AIDS status because they feared stigmatisation, reje ction and discrimination by people in the community. One participant described how she and her husband, both of whom had AIDS, managed their situation. Since I got AIDS… I just stay indo ors in the city; I did not join with people in the community. Around my house had a lot of food shops. I did not want somebody to know I had AIDS because I was afraid of them looking dow n on me and my family…Might be it can affect my family, especi ally I am concerned about my daughter as she is young and doesn’t know every thing about me and her father……I feared ge tting stigmatized and being discriminated against from othe rs……. I feared my husband must lack a job if other people knew he got HIV because of the social disgust…an AIDS person… (D: 26/02/0 5 ). When participants have visible signs on their bodies they have increased risk of being rejected and experiencing shame. Thus pa rticipants with visible signs protected themselves by getting dressed in long-sleeved shirts. I saw AIDS patients in a village who had many symptoms such as dark skin, thin, headache, stif f neck, white patches in their mouth and fatigue. It is fearful and I felt disgusted with AIDS patients before…… I was afraid of contracting from them…At present; I get AIDS and had black skin lesions on my body. I fear the rejection and disgust of peopl e in the community. I normally dress with long sleeve T-shirt to protect myself because I feel 72 fearful and shamed…I don’t want other people to blame me……(L: 26/05/05 ). Many women participants reported feeling shame because of societal beliefs that they must have done something wrong or something immoral in order to be HIV infected, even though they knew that they had caught the disease from their husbands. 4.4.2 Loss of financ e Participants who were sick could no longer work and that led to a role change for them and their family members. They experienced loss of finance and also experienced loss of self-worth. So me participants stated that: Before I got AIDS , I was a truck driver and drove to Bangkok every fortnight and back home for a few days. I earned money about 6,000 baht per month for family living. When I got sick, I stopped work and went back to my hometown with a lack of money…. I felt devalued… (G: 04/03/0 5 ). When I got AIDS and was sick, I lost a job, I had no money. I could not spend money like before I just stayed home… and watched television…. I would like to go back to work as before if I am healthy…but now I have not hing to do…I feel worthless… (N: 18/ 03 /05). Loss of jobs or inability to work because of visible signs of illness affected participants’ family life. Most partic ipants and their families faced economic problems because of the expense related to HIV/AIDS treatment, which caused economic hardship. High rates of HIV infec tion and high mortality rates resulted in substantial social and economic cost. In a nother Thai study, Kilmarx et al. (2000) reported that many families were devastated by loss of young working people and consequent reduced family income. 73 4 . 5 BEING HIV/AIDS: Learning about HIV/AIDS The participants tried to learn as much as possible regarding HI V/AIDS such as the nature of HIV/AIDS, the factors affec ting health and the disease progression, prevention and care and the appropriate management of the disease, by devising learning experiences for themselves. Thus, pa rticipants would develop self-care skills to maintain their health or manage their illness. They hoped that they would be healthy and live for a long period of time. Although, previously they obtained information about HIV/AIDS in a negativ e way from television and radio, once diagnosed with AIDS they tried to learn th e facts about the disease as it pertained to themselves. Participants focused more on how to be healthy and live as long as possible. The concept of “learning about HIV/AIDS” was supported by codes including f a m i l y , media and health professi o n a l s . 4 . 5 . 1 Family Some participants had learned about HIV inf ection and AIDS disease and strategies to help them survive, from their husbands or wives who had HIV/AIDS . Some participants stated that: I had experienced AIDS from my husband when he developed serious illness with TB and had many symptoms such as cough, headache, inability to eat, fatig ue and weight loss which gave him suffering (took tor ra man) including my family. I had to look after him in order to help him to survive until I got sick with AIDS, I took good care of myself to prevent getting a serious illness, so I learned from my family experience…(V: 07/04/ 0 5 ). When I got AIDS I learned to stay alive from the experiences of my ex-husband and the present husband to cope with the problem to maintain life although AIDS is not cured, but if I take good care of myself I can live longe r…I know because a doctor told me… (CC: 10/06/0 5 ). 74 The participants learned about the disease from their own experiences with their family member’s illness. Consequently, pa rticipants could understand and had more knowledge of AIDS disease, and this led them to change their perceptions about HIV/AIDS. As a result, participants found ways to adjust themselves to deal with the situation and maintain their daily life. 4 . 5 . 2 Media The participants had learned about the disease when they tried seeking health information from differing media about HIV/ AIDS. This learning taught them how they could perform self-management in order to live longer w ith their disease. I liked watching television and li stening to the radio about HIV/AIDS disease as it would help to really understand the disease in order to maintain life to live longer and look after my child until he grows up…(Q: 06/05 / 0 5 ). I sought knowledge about HIV/AID S from the book I got from the hospital; it was useful for me to improve my quality of life because I needed to live longer and be healthier with my family. I avoided taking risks, I had appropriate food and enough sleep (S: 02/05/05). Knowledge about the disease from the medi a is needed to cope with the multiple problems that result, from HIV/AIDS, incl uding medical, psychological, social and economic problems (Thaineua, 2007). 4 . 5 . 3 Health profes s i o n a l s All participants learned about the disease from healthcare providers at the hospital when they had a regular health follow-up after they developed the illness. They gained knowledge about the disease and self-care practice and used it in their daily lives in order to reduce stress and manage their problems to maintain their lives. I always saw AIDS patients in a village and nearby my village; many cases got serious symptoms and death so it is severe and 75 fearful. I do not want to die because I am concerned about my children and my mother if I die, w ho would look after them? I try to make power and tam jai and went to baan rom yen to observe other HIV/AI DS patients, what are they doing? What about their health? I saw most patients are more serious than me. I stood near the door and looked around the HIV/AIDS patients until a nurse came to ask me, what am I doing here? I told her I got AIDS and she took me to sit in front of her desk and ask me how long since I had blood test. I said one week. How do you think? I was afraid of dying. She said to me do not fear death, it was not easy to die. Not only I had AIDS but also people around me got AIDS…. After I met her I felt my will-power incr ease and I am now healthy… (I: 19/02/0 5 ). T he doctor told me this disease was not easy to die from…. If I took good care of myself I can live longer with my family so it depended on me. Thus, I went to baan rom yen to join the project activities such as counselling, and exercise. I joined in exercise groups about 3 times. After that, I felt physical strength… (H: 18/02/0 5 ). Participants learnt about their disease from a variety of sources including the media, families, peers, social support networks and healthcare providers. This is because they need to be knowledgeable about HIV/AIDS, understand their personal medical histories and treatment plan, and interact comfortably with their healthcare providers, in order to assist them in managing and living with their chronic condition (Nokes & Nwakeze, 2005). 4 . 6 CONCLUSION The category “being HIV/AIDS” represents the first stage of the basic social psychological process: “f r o m expe ri e n c i n g social disgus t to passing as normal ”. The category includes the concepts, “being diagnosed with HIV/AIDS”, “being 76 77 stigmatised”, “suffering” , and “learning about HIV/AIDS” . These substantive concepts are in turn composed of in vivo codes, which detail the experiences of suffering, rejection and discrimination that comprise “being HIV/AIDS”. The participants initially understood HIV/ AIDS as an incurable, communicable disease that was survivable only for a short time period. Fu rthermore, they realised that the responses of family, community a nd society to people living with HIV/AIDS were likely to be rejection and disgust, both because they feared contracting the disease from social contact with people with HIV/AIDS, and because of the association of the disease with homosexua l behaviour, promiscuity and illegal drug use. Being HIV/AIDS meant potential loss of health, friends, employment, financial independence, physical intimacy, and the support of one’s family members (Friedland, Renwick, & McColl, 199 6; Plattner & Meiring, 2006). The initial shock, loss of hope and fear of stigmatisation that arose from being diagnosed with HIV/AIDS gradually abated as the participants learnt more about living with HIV/AIDS from health profe ssionals and others who were living with AIDS. As participants came to accept being HIV/AIDS and learnt of the possibilities for living with HIV/AIDS as a chronic disease rather than as a rapidly fatal illness, they turned their attention to learning how to maintain their health and manage their situation to live as satisfying a life as possible with HIV/AIDS. CHAPTER FIVE MAKING CHOICES 5.1 INTRODUCTION In the previous Chapter, I presented the category “being HIV/AIDS” . In this Chapter I describe the category “making choices” . The action of making choices became important when people with HIV/AIDS revi sed their understanding of what it means to have HIV/AIDS. Participants made choices in order to live a “normal” life, learning how to maintain their health and manage their life situation to live as satisfying a life as possible with HIV/AIDS. Consistent w ith living in a collective society, managing and rebuilding relationships with others was a key element in the choices made by participants. The category “making choices” was supported by the three concepts, including avoiding unhappy situations, seeking support, and getting remarried (Figure 5-1). Avoiding unhappy situations > Won’t be around people >Stay at home with family >Talk to those who accept and come to talk >Selective disclosure Making Choices To live a “ normal ” life Seeking support >Family >Neighbours >Friends and PLWHA network groups >Health professionals >Government and non government offices Getting remarried >Need a friend >Need a complete family >Need a child Figure 5-1: Core Category-Making Choices, Concepts and Codes 78 5 .2 MAKING CHOICES: Avoidi ng unhappy situations Participants kept themselves from harm ful things and discrimination, by “avoiding unhappy situations” with people who looked down on them and made them feel uncomfortable. Thus, participants saved themselves from upset by limiting their activities in their villages. “ Avoiding unhappy situations ” was a way to enable them to have happiness in their life; the concept was represented by the codes: won’t be around people, stay at home with family, talk to those who accept and come to talk, and selecti v e disclo s u r e . 5.2.1. Won’t be around people Most participants said they kept themse lves away from other people because they thought that others knew they were living with HIV/AIDS. The participants chose not be around other people, includi ng avoiding participating in group activities with other people in the community, because they did not want to be hurt by others who might retain negative attitudes toward them. Avoiding being around people in public was a way of controlling fear of rejection. I did not want to be around peopl e, and I did not want people to know that I had AIDS. I knew that AIDS would stigmatise me. I did not want people to be revolted by me and I did not want to be hurt…. I did not want others to look down on me… (K: 20/02/ 0 5 ). When I joined in religious activities at the temple, the village people stared at me when I walked or stood there and whispered to each other about me. But they did not ask after me or chat with me as before…. I avoided them and walked back home because I was hurt and unhappy… (I: 19/03/ 0 5 ). Thus, participants did not want to be in a public place around people who may reject them because that caused them stress and unhappiness. This choice by some participants, to withdraw almost entirely fr om village life to protect themselves from 79 hurtful rejection, is consistent with the findings of Klunklin (2001) and Ichikawa and Natpratan (2006). 5 . 2 . 2 Stay at home with family Although most participants have disclosed their HIV/AIDS status to some others in their community and many have experienced some acceptance by others, they preferred to stay at home with their family rather than going to meet other people outside the family home. As one participant stated: I have revealed myself. Now my friends and even other village people accept me, invite me to their homes and ask me to their parties but I do not want to join i n. I am afraid of their hurtful words. I prefer to stay home and talk with family members, and if others drop in to see me it makes me so happy… (A: 13 /02 /05). Although the participants have revealed the truth about their HIV/AIDS status, they prefer to stay home because they know so me people are insincere towards them– talking about them with others, and rejec ting them. Some participants experienced social disgust rather than acceptance by others, thus staying at home or spending time with others with AIDS was a way to avoid unhappy situations. I have disclosed myself to the co mmunity but they are disgusted by me. I feel that they are not being fair with me or my family. Nobody understands me. It was not me who did wrong and I feel unhappy. So I just stay home or go and talk with friends who are in the same situation …as me… I have to be strong and try to manage my life for normality… (I: 19 /03 /05). 5.2.3 Talk to those who accept and come to talk Participants who had disclosed their disease were happy to talk with neighbours and other people who showed that they accepted them by coming to visit them at home. Participants thought that other people came to talk to them at home because they understood that the disease could not be caught by social contact. 80 I am lucky because my neighbours are very good to me. They understand that my disease is not transmitted by talking. They do not hate me but come to talk wi th me at home. They have never shown that they are disgusted wi th me. Sometimes I go round to their house for a chat. Presently I am happy and content with my life and my family. I do not think much about my disease – if I do it makes me unhappy and it affects my health… (C: 19/02/ 0 5 ). Neighbours and others in the village come and talk with me, asking how I am. They ar e very friendly. They do not hate me as my father does. They understand me and my family. I feel better and happier with them than I do w ith my father… (H: 11/03/ 0 5 ). Staying at home with supportive family members, and restricting interaction to those people who demonstrated acceptance and some understanding of the disease by visiting the participant at home, are effective ways for participants to screen out those villagers who may rebuff or despise them. 5.2.4 Selective disclosure Some participants chose not to disclose their HIV/AIDS status, or to selectively disclose it, because they did not want to be hurt by rejection and/ or they did not want their families or their job to be affected. They chose to keep their health status secret in order to live a “normal” life and to earn money for living expenses for their families. A female participant said: While staying at home I did not tell my mother or relatives that I had AIDS because they reject and hate people with HIV/AI DS, saying that people with HIV/AI DS are bad people and filthy. My new husband, daughter and I moved to the city to live with my husband’s grandmother. She does no t know I have AIDS, nor do the neighbours around me because I did not tell them. I am afraid of being rejected and desp ised. I just stay home with my husband, daughter and husband’s grandmother… (D: 16/02/05 ). 81 Another couple, both with HIV/AIDS, have a small barber shop in another village about 30 kilometres from their house. They ha ve maintained this barber shop for three years and enjoy their work. They earn sm all amounts of money about 200- 400 baht (1$NZ= 27 baht) a day and they work every day from 9.00 a.m.-5.00 p.m. They keep their HIV/AIDS situation secret from others in order to earn a living from their job, but they chose to disclose their illness to people in their home town. I have not revealed the fact that I have HIV. Sometimes I am afraid that people who live near my business will know that I am infected with HIV. I am afraid of the customers finding out that I have HIV, and then telling others so that my livelihood is affected. I am a barber, and perhaps some will decide not to get a haircut at my shop – especially uninformed people who do not understand the disease, but have a negative attitude to AIDS and HIV-infected people…(F: 27/02/0 5 ). Another participant disclosed his HIV-status only to his family because he feared social rejection and the impact disclo sure would have on his job. He said: I f I reveal the truth about myself, I do not know what adversity will come to me and my family, because people do not tolerate this disease. Maybe it will aff ect my livelihood. I am a muffin vendor…(R: 24/02/0 5 ). One participant chose to disclose to fam ily and the community because he needed support from, and to live with, family in the community. But he kept his AIDS status secret from his friends and his employer in other places because if he got better from his illness he would go back to work at the same place. He explained that: At first, I did not tell other peopl e that I had AIDS, but just told my mum, brother and sister. But village people suspected that I had AIDS because I had the same physical symptoms as an AIDS patient. I heard them say to each other that I surely had AIDS 82 because they had seen other AIDS sufferers in the village with the same symptoms as me. Now I have told them the truth, but I told my friends and boss in Bangkok that I had pulmonary tuberculosis (TB). I really do have it, and I take anti-TB medicines. But I lied to my friends because I was afraid that they would be revolted by me, and if I got better, I could return to work in Bangkok again… (N: 18/ 03 /05). Disclosing HIV/AIDS status could bring shame on their family and the community. HIV-infected people needed coping strate gies based on the concept of saving face (Bhattacharya, 2004). Some participants kept their status secret for many reasons. Some were afraid that their families and friends could not accept them. Some did not want to make their parents or families worry about them. Keeping their HIV/AIDS status secret made them feel safe in their life. In contrast, self-disclosure enabled participants to seek social support a nd new information about the disease. Participants’ fears about disclosure of their illness are supported by other studies. For example, Viddhanaphuti (1999) reported that disclosure to the general public often has negative effects, particularly on people’ s work, and may lead to prejudice from society. 5 . 3 MAKING CHOICE S: Seeking support The participants were suffering with distressed feelings about their disease and people around them, so they needed to seek support from others in whom they had faith to accept them, and listen to them. Others could make them feel better and comfortable. The concept “seeking support” included the codes family, neighbours, friends and PLWHA network groups, health professi onals, government and non-government office s . 5.3.1 Family Participants needed help from the family members around them for financial assistance and emotional and practical support. Thus they disclosed their HIV/AIDS status to family members on whom they felt they could rely. The participants could 83 tell their feelings to family members and receive support from them, including acceptance, care and comfort. The participants stated: When I stay home, my husband and daughter help with the household chores and support me with a little money for everyday living expenses. Especially, my son sends me about 2,000 baht every month because they love me. I am his wife and their mother (laughs…and looks at her daughter) … (B: 17/02/ 0 5 ). W hen I become ill and have no money, my elder brother helps me. He gives me money, supports me and takes me to hospital with my husband. He does not recoil from me but instead looks after me… (D: 26/02/ 0 5 ) . Families provided care and sympathy includi ng financial and emotional support to the HIV/AIDS member. However, the nature of care provided to HIV/AIDS people depended on household types (extended or nuclear family) and available family income (Singhanetra-Renard et al., 2001) 5.3.2 Neighbours Most participants would disclose their HIV/AIDS status to their neighbours because they sought help, support and advice about th eir life, what to do next in daily life. Neighbours could help people living with HIV/AIDS in a variety of practical ways. For example: My neighbours give me tap water to use, let my nephew play with their children and give me food. They are very sympathetic towards me and my family, and are not hurtful. They made me feel better after I talked to them… (G: 04/03/ 0 5 ). When I was working in the rice fields, they helped me look after the children. They understand and sy mpathise with me because 84 they know it is not my fault that I developed AIDS. I got AIDS from my husband…. I just stayed home doing the housework….I was not a sex worker… (G: 11/04/05). The neighbours came to visit me at home when I was sick, and also provided food for me…. They told me do not worry about the disease, and I must fight th e disease to stay alive… (O: 12/14/0 5 ). The participants hoped that they would receive help from neighbours because they knew some neighbours understood their disease and had pity for them. 5.3.3 Friends and PLWHA network groups Friends, in this context, referred primarily to people who were not infected with HIV or AIDS, and were known to the participants from their home villages or work-places. Both friends and people living with HIV/AIDS (PLWHA) network groups, were sources of emotional, informational a nd financial support to participants. I receive support from friends – they bring money and milk when they come to visit me at home. They feel sorry for my family and pity my nephew. PLWHA are also providing me with emotional support. They talk with me and persuaded me to join a vocational training group to get a job. They understand that I need to earn money to lift myself and live well… (F: 23/05/0 5 ). My friends who have AIDS come to visit me at home. The knowledge and experien ce they share with me helps in daily living and in improving my health… (B: 17/02/0 5 ) . In addition, most participants joined in shared activities and shared experiences and feelings in the HIV/AIDS day care clinic at the hospital or in other places. 85 5 . 3 . 4 Health profess i o n a l s Participants most often sought help and support from health professionals at the health care services after they knew their dia gnosis of HIV/AIDS. Some participants explained that: Following a blood test I knew I had AIDS with TB in 2003 (CD4+ about 106). I felt sad. I did not want to c ontract it, and others did not want to get it either. But it happened to me. Later, I went to House of the Cool Shade (HIV/AI D S day care clinic) to receive counselling. I felt better because the nurses conveyed lots of advice about the disease, how to prevent it, how to lower the risk of infection, and the medi cal treatment of opportunistic diseases. They also gave me psyc hological support. In particular, when coughing, I was told to co ver my mouth with my hand to prevent the spread of germs, and also to separate personal articles… from other people… (G: 18/02/0 5 ). When I went to hospital, nurses gave me emotional support to help me cope with stress. I also joined in an exercise group there and I talked and shared feelings with other HIV/AID S patients about our life experiences with AI DS. I was able to relax more and …feel comfortable… (A: 13 /02 /05). I received good support from doc tors and nurses in terms of AIDS information and funding. A nurse sought funding for me and succeeded in getting 2,000 baht per year for me. It is not much money but it is important fo r me to use money to obtain milk and food for our family needs. The nurses support me emotionally as well, asking how my symptoms are, and how the family is. They talk with me as if I was their cousin. They are very friendly with HIV/AID S sufferers, refusing to look down on us… (B: 17/02/ 0 5 ). 86 All participants usually went to see a doctor every health follow-up and before regular physical check-ups when they got sick. Th ey also sought funding help from health care providers so the healthcare providers could help them to obtain funding from social welfare or government. 5 . 3 . 5 Government and non-gove r n m e n t offices Both the government and non-government offices in Thailand provide support and funding for people living with HIV/AIDS or for HIV/AIDS education programmes. I cannot earn money, but I r eceive a benefit of 2,000 baht per year from the provincial social welfare fund, for living expenses… (D: 26/02/ 0 5 ) . I received a grant of 12,000 baht ($NZ450) from an NGO to set up my business. I have a barber’s shop and I am happy because I enjoy doing that work … (F: 17/02/0 5 ). I have 2 children – a girl aged 10 and a boy aged 8. Both of them look healthy and are not infected with HIV. They attend primary school in the village. The school provides free lunch for them and the government meets all tui tion costs. They also receive 6,000 baht per child per year from the government. This support for my children began just this year after a nurse offered the proposal to me. I also receive 2,000 baht per year from social welfare which a nurse also arranged for me. …So Mor pern ethon chan (the nurse took pity on me)… (Q: 06/05/0 5 ). Seeking government and non-government support are ways to get an income through claiming HIV/AIDS benefits and via vocationa l training to replace the loss of income after being diagnosed with HIV/ AIDS and losing employment. 87 5 . 4 MAKING CHOICES: Getting remarried Most participants decided to remarry after their husband or wife died. Two participants married men who did not have HIV/AIDS. Ten participants married people who were also infected with HIV/AI DS. Participants remarried because they needed someone to take care of them and their families after their loved ones had passed away from them. In this study, the concept of “getting remarried” included the codes n e e d a friend, need a complet e family and need a child. 5 . 4 . 1 Need a friend . Six participants stated that they remarried because they needed friends to consult when they had a problem. Moreover, partic ipants wanted someone to understand and to take care of them and their chil dren. Remarriage was often supported by the participant’s parents, who hoped that the new spouse would provide additional emotional and financial support and thus reduce the burden on the family. The following extracts illustrate the perspectives of one couple that married after meeting at the HIV/AIDS clinic: M y parents wanted me to rema rry. They wanted me to have a friend to consult with when I have a problem. Now that I have married again, I do not feel lone ly. I married an HIV-infected person whom I met at House of the Cool Shade (The HIV/ AIDS daycare clinic). My new husband understands and takes care of me, helping me to raise my family. He gives me courage and love which make my life so much happier. I help my husband earn money for family living expenses… (E: 17/02/ 0 5 ). I remarried with an AIDS person. I needed someone to take care of me. Being in the same s ituation as me, my new wife understands and we love each other. I am happy because I am not lonely any more. After getting married, I moved to live with my wife’s family. My wife’s parents love me because they wanted 88 their daughter to have a friend who would look after their daughter… (F: 17/02/0 5 ). 5.4.2 Need a complet e family In addition to friendship and financial support, the notion of having a complete family was important to some participants, who had b een left to live alone or with children, following the death of a spouse. Thus, par ticipants remarried because they needed someone to replace their spouse (to be a fath er or mother) in order to be a complete family again. I remarried because I want to hav e a complete family – father, mother and children. I wanted someone to come and look after me and the children who were born to my previous husband. Now I feel happy, my new husband earns money for the family, he loves my children and we live together in a good relationship (E: 24/03/05). When my wife died, I felt lonely so I lived with my mother and brother. But mum is old and I needed someone who understands me to come and take care of me and my family. I did not know what would happen to me or the family if I got sick…..so I remarried, to an AIDS person who looks healthy…and has two children. We live together and I help her raise the children. I am now happy with a family… (DD: 25/04/0 5 ). Many participants had lost a spouse, and had lost jobs. They did know what to do until they met someone who understood them. Then they tried to reconstruct their family in order to live a “normal” life by remarriage with an individual who also had HIV/AIDS, thus meeting the needs of both pa rtners for a complete family. The family is the basic unit of society. Consistent with living in a collective society, managing and rebuilding relationships with others was a key elem ent in the choices made by participants. 89 5 . 4 . 3 Need a child Four participants chose to have a child after they were diagnosed with HIV/AIDS because they wanted to maintain the continuity of their family line. They knew that the HIV infection could be transmitted from mother to child when the women got pregnant but relied on the women taki ng good care of themselves during their pregnancy and following the doctor’s advi ce about taking antiretroviral medicine . I remarried because I want to have children to continue the family line. My family has only one child, but now my wife is pregnant and if she has a son, he will bear my surname. If she has a daughter, she will have my wife’s surname (laughs…laughs)…. I say it like t hat because a son is very important to me in keeping the family line going. Really, and I do not worry about the children becoming infected. I have found that lots of babies are free of infection….I pray every night before bed, asking Lord Buddha for a normal child for my family. And during my wife’s pregnancy I abstained from having sex with her because I did not want the baby to be infected with HIV. I am 100 % sure the baby does not have HIV (laughs…and …boasts)… (K: 20/02/ 0 5 ). I needed a child in the same way my husband needed a child. I knew how to avoid passing the virus to my baby during the pregnancy. I took AZT medicati on until I gave birth. My son is OK – he looks healthy… (J: 20/07/0 5 ). During pregnancy, women were routinely test ed for HIV infecti on before delivery, and HIV-infected women were provided with infant formula and advised to avoid breast feeding. It is recomme nded that antiretroviral treatment (zidovudine) be given for 3 months during pregnancy, controlled intravenously during labour, and be given for 6 weeks to newborn infants to reduce the transmission of HIV infection from mother-child (Kanshana & Simonds, 2002). 90 91 The findings of this study are consistent with those of Klunklin and Greenwood (2005a) who found that people living with HI V/AIDS remarried to make sure that they and their children would be cared for when they got sick or that their children would be cared for after their mother died. They also remarried to be normal. 5 . 5 CONCLUSION The category “making choices” represents the second stage of the basic social psychological process: “f r o m expe ri e n c i n g social disgus t to passing as normal ”. The category includes the concepts, “avoiding unhappy situations”, “seeking support”, and “getting remarried”. These substantive concepts are in turn composed of in vivo codes, which demonstrate how participants ma de choices in order to live a “normal” life, learning how to manage their life situation to live as satisfying a life as possible with HIV/AIDS. Consistent with livi ng in a collective society, managing and rebuilding relationships with others was a key element in the choices made by participants. With these relationships settled, participants had the emotional and financial support and the reason for living that motivated them to focus on “ keeping well”. This category is addressed in the next chapter. CHAPTER SIX KEEPING WELL 6.1 INTRODUCTION In the previous chapter, I presented the category “making choices”. Participants made choices in order to live a “normal” life, learning how to manage their new life situation, in particular managing and rebuild ing relationships with others. In this chapter, I describe and illustrate the category “keeping well”. Keeping well was the process by which the participants adjusted their daily activities in order to promote their well-being and maintain their lives. Participants were motivated to take good care of their physical and mental health because they believed, having learnt of the possibilities for living with HIV/AIDS as a chronic disease rather than as a rapidly fatal illness, that they could face the future with HIV/AIDS. Although they had developed a serious illness, they could recover and live longer. Most of the participants looked as healt hy as other people in their communities. However, many had experienced some minor illnesses or severe illness from AIDS- related opportunistic infections. Only a few participants had visible signs of disease, such as skin diseases, oral candidiasis, cough and diarrhoea. All participants had to manage their conditions to sustain their health and recover from their illness by “keeping well” to maintain thei r physical and mental health. The category “ keeping well” was supported by the eight concepts that include religious practices, keeping a cheerful mind, self-treatment, taking care of the body, keeping the environment clean to prevent getting germs, healthy behaviours, getting healthcare services and attention to, and concern about, medication. These concepts, and the codes that are included in each concept, are illustrated in Figure 6-1. 92 Taking care of the body >Eating healthy food >Avoiding taboo food > Keeping the body fit >Sleeping well >Personal hygiene Getting healthcare services >Consulting health professionals and visiting clinic >Following guidance Keeping Well To maintain emotional and physical health Keeping the environment clean to prevent getting germs > Washing clothes >Washing dishes >Drying in the sunshine Religious practices >Making merit >Temple activity > Practising meditation >Reading Dhamma >Praying in front of Buddha image Attention to, and concern about, medication >Concern re the timing of medications >Concern re the dosage of medications >Concern re the side effects of medications Keeping a cheerful mind > Enjoying recreation >Living in a good environment Healthy Behaviours > Stopping the addiction >Using condoms > Preventing accidents and injury to self Self-treatment > Buying medicines from the grocery store to relieve symptoms >Using herbal medicines Figure 6-1: Core Category-Keeping Well, Concepts and Codes. 6 .2 KEEPING WELL: Religious practices A religious practice occurred when people living with HIV/ AIDS made a decision to take actions of self-management to face distress brought on by illness. All participants 93 in this study were Buddhist; they believed in, and performed, religious practices to help them confront their situation and to reduce their stress. Most participants increased their attention to religious practices after becoming ill; women participants were more likely to perform these activities than men were. Religi ous practices helped them to maintain their perspective on life and to experience comfort, peace and happiness in life. In addition, practising religious activities could help participants to feel better and adjust well to face their problems and to have hope for better outcomes in the future or in the next life. The concept of “religious practices” included the codes making merit, temple ac tiviti e s , meditati on, reading Dhamma book (Buddha’s scriptures), and praying in front of Buddha image for help when the illness became severe or life threatening. 6 . 2 . 1 Making merit Making merit (tam boon) is normally practised to promote the present and the next life. For Thai Isaan cultures, making me rit usually involved going to the temple, praying to the Buddha images, meditating, joining in temple activities on Buddhist holy days, donating articles or money to th e monks and helping others to do work. Most of the partic ipants performed “tam boon” (making merit) by offering food and listening to monks’ sermons because they believed that religion was good for people and could make them have “sabai jai” (an easy mind or healthy mind) and be good persons after they made merit. They thought making merit could help them to be healthy, free from sickness, have a p eaceful mind, and be happy in their lives. Participants said that: W henever there are traditional merit-making events in the community, I like playing the drum in the procession, then I pray and attend the monks’ sermon in the temple. I feel encouraged and contented because I participate with the people of the community and I also make merit to the monks. I am not weary of it all, but rather I have pe ace of mind and a sense of contentedness with my life… (keeps smiling…) (F: 27/02/0 5 ). 94 I like to make merit. I offer glutinous rice and boiled eggs to monks every morning in front of my house. I pray for peace, happiness, health and wealth for me and my family both now and in the next life. I believe that if I do good things, I will have good things returning to me, but I do not know when … the good will come back. I try to do …good things… (I: 05/03/0 5 ). Most Thai people and participan ts in this study believed that effects in the present day originated from a cause in the past, or even in the previous lif e. People make merit and virtue (tam boon) in order to eliminate selfishne ss and greed. Buddhism teaches people that practising good deeds affects their karma and that they should make merit by performing morality (sila) , mental discipline (samadhi) , and wisdom (panya) (Klunklin & Greenwood, 2005b). 6.2.2 Temple activity The participants visited the temple on B uddhist holy days to perform religious activities, including making merit, paying re spect to Buddha’s image, worshipping and listening to sermons from the monks. Participants explained that: Today is Makha Bucha Day, and my mother and I went to the temple to make merit, by offe ring food and alms to the monks there. I venerated the Buddha to take my sins away. My mother believes that after making merit, suffering and misfortune will be sent away… (A: 23 /02 /05). On holy days, I visit the temple to offer food and alms to the monks and listen to their sermons. These days include Makha Bucha Day, Visakha Bucha Day, Arsaraha Bucha Day and Orkpunsaa Day. After making merit, I feel at peace with myself, with calmness of mind too. My par ents taught me to make merit on behalf of my ancestors by offe ring food and giving alms to the monks, who then send them to my ancestors. I believe Buddhism is the best part of my life… (T: 03/05/0 5 ). 95 Most Buddhists believed that by donations of things, food, and money to the monks, or sponsoring temple activities, they would obtain merit (Klunklin, 2001; Songwathana, 1998). In addition, participants believed that when they went to practice temple activities that made them healthy in their life. 6.2.3 Practising meditati o n Meditation may be used as a self-care management strategy by people living with HIV/AIDS. Meditation helped to increase the participants’ awareness of their stream of consciousness. Thus, performing medita tion practices could lead them to better health and assist them to stay well. When they felt worried and stressed they would practise meditation for reducing anxi ety. A participant explained that: I practise meditation by sittin g and doing breathing exercises. On breathing in I say “phut” and when breathing out I say “tho”. After about 20 minutes I have peace of mind and I sleep well until morning. I believe that having peace can result in better health. I have heard the monks teach this when they preach at the temple on holy days… (S: 02/05/0 5 ) . Most women participants performed me ditation before sleeping because they perceived that if they had a calm mind and could sleep well, that helped them to improve their health and stay well. Meditation practises can positively influence the experience of HIV/AIDS or other chroni c illness (Bonadonna, 2003). There are many forms of meditation practice. 6.2.4 Reading Dhamma (Buddhi s t scriptu r e s ) Most participants read Dhamma (Buddhist scriptures) because they wanted to know what Buddha taught people by speaking via the book. Some participants reported that reading Buddhist scri ptures in Thai and Pali (the language of Buddhist scriptures) reduced their feelings of boredom or guilt and anxiety and helped them to have calm minds, while others looked for answers about the meaning of life. Participants said that: 96 I seldom go out . I just stay home and look after my grandmother. Sometimes I feel bored and anxious but I manage these feelings and learn to survive by reading Dhamma … (D: 26/02/0 5 ). When I read Dhamma I understand what life is about and it gives me peace of mind. I stop worryi ng about the disease because the teaching states that humans will experience birth, ageing, sickness and death, so everyone has to face it… (Z: 17/04/0 5 ) . Participants reported that reading Dhamma taught them to be good people, to adapt themselves to live in society and to be free from stress. Sritanyarat (1996) reported that people living with diabetes performed religious practices when the illnesses were severe or life-thre atening by practicing Dhamma because they believed that performed religious practices seem to adapt well to their problem. 6.2.5 Praying in front of Buddha image The participants connected with the Buddhist religion by praying in front of Buddha’s image. They believed that worshipping and “suad mon” (praying) could help them and their families to be healthy, with peaceful minds and be free from diseases. Participants said that: I worship the Buddha image every night before going to bed. I believe that worship stills my mind, preventing it darting from thought to thought, and I sleep well… (G: 25/02/ 0 5 ). I sleep well because I chant and bow down before the Buddha’s image. Lord Buddha protects me and my family from disease and imparts well-being to us. After praying, I feel happy… (T: 03/05/ 0 5 ). Thus, people with HIV/AIDS believed that r eciting chants before sleeping would help to protect them from evil. HIV/AIDS was a life-threateni ng condition. It was important for people living with HIV/AIDS to have inner strength. Religion helped 97 them to have that strength. Chinouya and O’ Keefe (2005) reporte d that finding inner strength by religion helped Africans living with HIV to cope with the disease, while Chammas (1999) suggested that an increase in hope may improve quality of life. Thus, participants tried to maintain or r eestablish religious practices in their life. These religious practices helped them to not dwell anxiously on their HIV/AIDS condition and they were able to sustain their life in society. 6 . 3 KEEPING WELL: Keeping a cheerful mind Participants stated that keeping a cheerful mind (jai berk ban) is an activity important for maintaining their well-bei ng and staying healthy. Participants believed that they could forget their health problems while enjoying recreation because they focussed on another activity instead of their disease. When participants lived in a good environment, they felt comfortable and stayed well. The concept of “ keeping a cheerful mind” includes codes e n j o y i n g recrea t i o n , and living in a good envir o n m e nt . 6.3.1 Enjoying recreation Most participants engaged in recreation act ivities more than was usual because they had more free time after they had HIV/AIDS. Many participants had no permanent job and just stayed home. Thus, they were able enjoy activities which made them more comfortable in their physical and mental states such as listening to music, playing karaoke, watching television, watchi ng cockfights, chatting with friends, shopping with friends and playing cards. Such activities distr acted them from thinking too much about their illness. Some participants said that: I have free time. Some days I will play cards with my friends nearby, other times I will sleep, watch television and chat with my friends at home. I am happy, have an easy life and feel at peace… (G: 25/02/0 5 ). In the weekends I like to watc h cockfighting in the village, and watch Thai boxing on television. So I talk, laugh and shout along 98 with other people. It is fun, and gives me relaxation and mental health. Since I was young I have loved to watch cockfighting and my father loves it too. I am rais ing 5 fighting cocks as a hobby. I love them. After handling them, I al ways wash my hands to avoid getting a virus from them. I know how to care for myself… (K: 20/02/ 0 5 ). I watch television, listen to music and chat with my wife. At the market I chat with friends. These things keep me free of stress – laughing and talking, and knowin g I am not alone. I do not remind myself that I have a diseas e, but that I can live with anything. I imagine that I am nor mal…my weight is OK… If I think (too much)… I am not happy, and become irritable… (R: 24/02/ 0 5 ). Participants believed that these activities were fun and helped them to feel relaxed, and happy and to forget their disease or their problems for a while. 6 . 3 . 2 Living in a good environm e n t Participants identified living in a good environment as important to keeping a cheerful mind and keeping well. A good environment included both physical and emotional aspects. They identified fresh air, a clean household and good ventilation as important to their health and happiness. One partic ipant explained that she cared about the environment around her, because she knew that HIV-infected persons and AIDS patients have low immunity and could get germs that make them ill if they were not concerned about the environment. As a housewife, I stay at home. But I care about the environment around so I try to protect it by cleaning the house, and things such as floor, crockery and food utensils, and clothes. I do not leave cooking and eating utensils around, but clean them immediately I have finished with them to prevent flies coming … (B: 14/02/05). 99 Some participants did not wa nt to live in a crowded situation, as they would be exposed to people who may reject them, because of their disease. On the farm the environment is good, with clean fresh air whether I sleep in the hut or whether I sit under a tree. Ventilation is good, and the air is not hot. By the way, people who reject me create a bad environment for me and I do not like being around them. I get stressed and unhappy with them… (A: 13/02/ 0 5 ). In contrast, some participants who had fully disclosed their illness to others in their village felt happy to engage with others in activities in public places as normal people. I like going out to ta lk with others and join in their activities, rather than staying at home… (Z: 11/04/0 5 ). When they engaged in public environments wi th others they said they felt happy, not bored like staying at home. Thus, a good liv ing environment was one that met the needs of participants for mental and physical well-being; it contribu ted to their ability to keep a cheerful mind. 6 . 4 KEEPING WELL: Self-treatment The concept of “self-treatment ” referred to the actions that participants took to take care of themselves when they got sick, but perceived that the illness was not serious. They preferred to buy medicines from a grocery store to treat themselves without a prescription from doctors. Moreover, they believed that they could take care of themselves when they developed symptoms by taking medicine in order to maintain their health and recover from illness. Only if the symptoms did not improve would they go to see a doctor in the hospital. The concept of “self-treatment” included the codes: buying medicine s from the gro cery store to relieve symptoms and using herbal medicine . 100 6 . 4 . 1 Buying medici n e s from the grocer y store to reliev e sympto m s In Thailand, people are able to buy medici ne from a grocery or drug store without prescription. Most participants would buy medicine from a grocery store to treat themselves, because they were confident that they knew how to treat themselves when the symptoms were not serious. Participants explained that: Sometimes I get mild sickness like a cold or a headache and I buy some paracetamol or tiffy (cold relief drug) at the drug store to treat myself. I drink warm water and take a rest as well. If I do not get better, I go to the doctor. I try to take care of myself first when it is not a serious illness… (D: 16/02/ 0 5 ). I got muscle pain, back pain and headache I then took ya pa ra (paracetamol) 2 tablets, when my symptoms disappear, I stop taking it… (T: 03/05 / 0 5 ) . Some participants said that when they got sick, they took medicines immediately (rather than rest) in order to relieve their symptoms and to go back to work again. I walked long hours because of wo rking in the n oodle shop, I got a leg pain then I used bandages to support the legs to relieve the pain…. I had a headache, my friend ga ve me four white tablets of medicine, after I took it, I felt better … (L: 26/02/ 0 5 ). 6 . 4 . 2 Using herbal medicine s After being diagnosed with HIV/AIDS, some participants and their family members tried to seek herbal medicines to cure their illness based on the recommendation of others. The herbal medicines used by participants included faa tha laai jone (name of plant), ya hark mai (herb medicine s including root and leaf of trees) and other kinds of herbal medicine plants. Participants explained that when their mothers needed them to be cured from the disease, they tried to find ya samoon prai Thai (Thai traditional herb) for their loved ones. There were many ki nds of roots of trees and leaves and there was a good smell after boiling them. They took herbs sometimes. 101 I drink about one cup of herbal me dicine every morning to cure my disease…. I believe my mother, who used it before without harmful effects…. After I take it, I feel like eating a lot… (E: 27/02/05). One participant developed symptoms such as gue sawat (herpes) , itchiness and an abscess in her genital area. She then went to see a doctor at a private clinic and the doctor told her that she had gonorrhea and herpes. The doctor gave her an injection and medicine to cure the diseases at home, but her symptoms did not improve. Thus, she sought other ways than modern treatment, and bought herbal medicines from the wat (temple) to treat herself. Once she had no symptoms, she stopped using it. I bought 4 bags of herbal medicine for 400 baht, made up of mixed tree roots and leaves . I boil it in a pot with water. Instead of water, I drank 4 pots of this for about a month. I felt much better. My symptoms disappeared, I was not itchy , had no herpes or abscess problems. I consider herb al medicine to be better than modern medicine. It also made me eat a lot, and I felt strong and energetic for work… (I: 19/03/ 0 5 ). Another participant said that he always used herbal medicines when he got papulae (tum kun, ugsape) over his body that he scratched because they were itchy. His grandmother boiled many kinds of leaf with water (yay tom bai nard, bai yuow, plurg ma tum and ton ta krai hom) for him to take a bath 2-3 times a day; then she painted the papulae on his body with kha min (curcuma longa-kind of herb) after bathing. After I had bathed in herb water for about a month I felt better. The papulae disappeared and I was not itchy. Although I got calamine lotion from the hospital I did not use it because it has not helped in the past… (P: 06/03/05). 102 Herbal medicine was cheaper, and consider ed better than modern medicine by some participants, who believed that after they used herbal medicines they could eat well and some symptoms disappeared. 6.5 KEEPING WELL: Taking care of the body The concept of “ taking care of the body ” referred to the daily practices carried out by participants to maintain their physical health. Participants understood that taking care of the body in terms of nutrition, fitn ess, sleep and personal hygiene would support their immune systems and would make it difficult for infections (germs) to attack the body. The concept of “taking care of the body” included the codes: e at i ng health y food, avoidi n g taboo food, keepin g the body fit, sleeping well and personal hygien e . 6.5.1 Eating healthy food Food choices for people with HIV/AIDS are ve ry important. All participants received advice from healthcare providers that they should be careful to avoid eating contaminated food or raw food and they had to obtain enough food to promote their health. Most participants would say “tong kin suk, sa aard” (cooked food and cleaned) to prevent getting germs. Therefore, most of the participants would cook their own food. I eat 3 meals per day and always on time. I still eat everything that I used to eat before such as noodles with beef or pork, papaya salad, pork salad, fried fish and vegetable soup. It is a good diet for me and my family and we can vary it each day depending on what we feel like eating. I never feel ill after eating. I also eat fruit- especially jackfruit, guava and mango for the vitamins and fibre content. I never buy fruit because my brother grows these near my par ents’ rice fields… (E: 17/02/ 0 5 ). I have 3 meals per day. In the morning I like roasted pork or fried fish with glutinous rice and for lunch I prefer noodles 103 because it is both a good food and easy to buy. In the evening I have a big meal with a variety of dishes such as steamed chicken, bamboo shoot salad, mushroom salad and steamed fish with vegetables. This is Northeastern food, and with the herbs I keep a good nutrient balance and enjoy go od health… (F: 17/02/05) . One participant said she could not restrict her diet; she at e many kinds of food, just as she did before developing HIV. She could eat “nue dip”and “muu dip” (raw meats) because she thought that raw meat had a good taste and made her strong. This participant knew the disadvantages of eating raw meat, and she said if she got sick she would stop eating raw meats. She liked to buy cooked food from the market; she did not want to cook by herself because she need ed to relax and rest after working hard and prepared food was very cheap. She could get enough food included in the five food groups to keep he r alive and healthy. I eat many kinds of food. If I want to eat raw beef or pork then I do. They are delicious, make me strong and I do not suffer allergies after eating. I have a big meal 3 times a day because I work hard on construction sites carrying bricks and sand. Sticky rice, meat and vegetables are very important to me because they give me the energy I need. I eat a lot each meal time and I also drink lots of water- about 3-4 litres per day- because of the heavy work and hot temperatures. I cook sometimes but mostly I buy prepared food from the market. It is cheap and for 10 baht I can get a bag containing a complete meal of meat, vegetables, oil, vitamins and mineral salt. I prefer not to cook because I save both time and money. I work hard over a long day for rather low pay and I need to relax and rest too… (I: 05/03/ 0 5 ). Participants and their family members knew how to prepare and cook foods for HIV/AIDS persons when they were sick and when they were healthy. Normally, women prepared the food, paying attention to cleanliness and healthy food choices. They demonstrated good knowledge of food groups, understood the importance of 104 good nutrition to the health of their immune system, and to their ability to live a “normal” life. Good food can help to extend the period when the person living with HIV/AIDS is healthy and working. I have 3 meals per day which I normally eat with my family. (I actually need 5 meals per day to get a complete nutrient diet). I clean my hands and the kitchen utensils before preparing food and cooking it. Every meal consists of plain or glutinous rice, meat, fish, chilli paste and fresh vegetables. I make sure I get good food. I also drink about 10 glasses of water every day, eat bananas to avoid constipation and I drink milk before going to bed. I think that I get adequate nutrients to maintain good health. When my sister buys ready-to-eat-f ood, I will reheat it to prevent infection in case it is no t hygienic… (Q: 06/05/05). Most participants or their family member s prepared and cooked food by themselves. They bought some items from the market and obtained rice from their rice fields, or their house garden. Most of the participants did not eat out because they were of a lower economic status; they were predominantly farmers or labourers who were dependent on daily earnings for living expenses. M y wife does most of the cooking and she likes to cook the fresh- water frog, fried fish, fried egg, fr ied dried meat (or chilli with fish sauce instead) and soft boiled vegetables. It is common food for us but it is nutritious…. We do not spend much money on food because we can catch it in th e rice fields or in the ponds around the house… (K: 20/02/0 5 ). Nutritional status is an important factor for quality of life of people with HIV/AIDS. Nutrition management strategies contribute to long-term survival and nutrition also plays a crucial role in improving oral health (Brown & Batterham, 2001; Patel & Hansen, 2005). 105 6.5.2 Avoiding taboo food The participants modified their eating habits by avoiding “ahan salaeng or kha-lum” (taboo food or forbidden food) and consuming the foods that were recommended by healthcare providers, friends and books , as participants explained: I do not eat chicken or eggs because they cause me to itch. I stopped because I am concerned for my health. I can have pork, seafood and fish which are richer in proteins. I do not eat raw food because of the parasites and the doubtful value they have for healthy living… (D: 16/02/0 5 ). I have had allergic reactions to seafood after eating them. I get an itchy rash over my body. I stopped eating seafood such as squid and shellfish… (P: 17/02/0 5 ) . My taboo food is pickled bamboo shoots. My eyes swell after eating it so I have now stopped taking it for my health’s sake… (Q: 06/05 / 0 5 ). Participants selected foods that they believed would be useful for their health such as protein from meat, vitamins from vegetables and fruits that they ate to promote their health and to improve their immunity to prevent getting sick. Participants avoided taboo foods such as raw foods, seafood and pi ckled foods, which made them ill. This finding is consistent with that of Kl unklin and Greenwood (2005a) who found that people with HIV/AIDS chose foods that were not spicy or pickled and avoided taboo foods because they needed to stay as healthy as possible. 6 . 5 . 3 Keepin g the body fit Some participants kept their body fit by regu lar exercise such as jogging, bicycling, playing badminton, walking, or doing aerobic dance. Other par ticipants undertook housework at home, and some helped with fa rm work and in the rice fields. Exercise was normally associated with increased immunity and reduced mental stress. 106 Participants perceived that exercise and work caused them to have strong muscles and a healthy mind, and prevented diseases. I get up early and go jogging along the street in front of my house for about 30 minutes. By t hat time I am soaked with perspiration. I think th is is good exercise b ecause it strengthens my muscles and gives me feelings of both relaxation and renewal (A: 23/02/05). I do aerobic dance with others for about 30 minutes while my daughter joins other children at a playground until about 5.00 p.m. The aerobic dance strengthe ns my body and refreshes my mind… (C: 16/02/0 5 ). Exercising was viewed as a formal type of increased physical activity; therefore, some participants gave the reason for not exercising as not having time. However, they thought that working in the construction i ndustry or on the farm or rice field and collecting firewood and carrying water provided enough exercise for them. Participants said that: I do not do exercise because I do heavy physical work all day carrying bricks, sand and cem ent. My body moves, and blood circulation is good. This is my exe rcise. I do get tired but I am strong and healthy… (I: 05/03/0 5 ). I am physically active, doing heavy work such as drawing water from the well and carrying it, c hopping fire wood in the field and carrying heavy loads of it back home… (M: 17/02/0 5 ). I do not have an exercise regime but I work hard physically every day. I do the housework, herd th e cattle 4 km per day to the paddy fields, and grow vegetables for th e table. I feel that this is my exercise which keeps me strong and healthy because I move 107 my body, my feet and hands, my joints and the blood circulates well, especially when I have to run to catch up with the cattle… (T: 03/05/05 ) . Regular exercise has been reported to streng then the muscles, make people living with HIV/AIDS feel energetic, help to reduce stress and improve their appetite (WHO and FAO, 2002). The participants chose to increase physical activity depending on their daily lifestyle and their perceptions about the usefulness of exercise in their HIV/AIDS self-care management. 6 . 5 . 4 Sleeping well Sleeping well at night is ve ry important for human well- being. In this study, most participants focused on sleeping well to maintain their physical and mental health. They understood that lack of sleep would affect their immune system, and enough sleep would improve their well-being. They had a range of strategies to relax themselves in order to sleep, and most ha d enough sleep, around 7-8 hours per night. Normally I go to bed immediately after watching television, and I sleep for 7-8 hours each night. I th ink it is enough for me. Once I joined with other hospital membe rs playing music but then I did not get enough sleep that night and felt out-of-sorts the following day so I slept then. I slept well and felt well enough to work. I know how to take care of myself and prevent sickness. I am concerned for my health… (F: 17/02/0 5 ). I sleep 8 hours per day and sleep well. I go to bed after watching television news and drama. The news gives me knowledge, the drama entertains me and I relax from work. Before sleeping I sometimes read the Buddhist scriptures or meditate and that relaxes me further for a good sl eep. I also open a window for good ventilation during the night …(S: 02/05/0 5 ). 108 6.5.5 Personal hygiene Participants reported paying particular attention to personal hygiene in order to stay well. Many undertook hard work in a hot e nvironment and reported getting dirty and sweaty from their housework and work in the fields. All participants took care of their personal hygiene by brushing teeth, bathing, washing hair , washing hands and cutting their finger and toe nails. People living with HIV/AIDS have low immunity and are easily infected. Therefore, the participants practised personal hygiene care to prevent infection. Brushing teeth and mouth care are very impor tant for people living with HIV/AIDS. Brushing teeth can prevent fungus or bacter ia from causing oral infection or tooth decay. I brush my teeth twice daily–a fter waking and before going to bed–to prevent germs build-up…. I understand that this disease causes weak immunity, and if I do not clean my mouth I can get infected with oral fungus…(C: 16/02/05 ). Participants reported taking regular baths because bathing made the body clean, look fresh and encouraged blood flow. Participants normally used soap to clean their body because they believed that soap could kill germs and get rid of dirt. In contrast, if participants did not bathe they felt uncomfortable and worried that germs could invade their body. Most of the participants washed their hair once a day; some participants washed their hair 3 times a week, depending on their work. I bathe twice each day…. I always wash before going out to work in the morning, and again in the evening after getting home…. If I do not bathe, I feel uncomfo rtable and itchy all over… (E: 17/02/ 0 5 ). I am a farmer and I have to keep the body clean to prevent germs and skin disease. Most of my time is spent in the rice fields and I get very dirty and sweaty and it makes me feel uncomfortable. I 109 wash twice daily with soap, whic h can kill germs on the skin before they can cause disease… (T: 17/05/ 0 5 ). I also wash my hair with shampoo every day in the evening because I work hard and perspire a lot. After I have cleaned the body, I feel comfortable and fresh- not tired… (S: 0 2 / 0 5 / 0 5 ). Washing hands was recognised as very n ecessary and important for people with HIV/AIDS to prevent infection because they have low immunity and easily get infections. I use my hands to seize things wh en I work and so I have to wash my hands before and after havin g a meal because I use my fingers in eating. If my hands are not clean, I would bring germs to my mouth. I am careful. My disease causes insufficient immunity and I can easily pick up infection… (S: 02/05/0 5 ). From the researcher’s observ ation, not all participants us ed soap when washing their hands, before and after serving meals to th eir children or to themselves. However, some participants reported much concern about washing their hands with soap to prevent infection and smells. Most participants would cut and clean their finger and toe nails to prevent infection. Some participants used thei r hands to prepare food for sale or to work with other people and recognised the importance of keeping nails short and clean. I cut my nails and keep my body clean to prevent myself and my loved ones getting infected. I do not want to get sick but to live for a long time so that I can raise my youngest son to adulthood (B: 14/02/05). I take good care of myself to preven t infection. I usually cut and clean my finger and toe nails by using soap and a scrubbing 110 brush. I am a barber and I deal with people every day. I do not want people to suspect th at I am infected with HIV (F: 17/02/0 5 ). As well as paying attention to taking care of the body in order to keep well, participants valued a clean environment to prevent infection. 6 . 6 KEEPING WELL: Ke eping the environment clean to prevent getting germs The concept “ Keeping the environment clean to prevent getting germs ” refers to managing the surrounding environment by cleaning things and keeping the equipment around people clean to prevent infections. This concept included the codes: washing clothes , washing dishes and drying in the sunshin e because household articles were seen as a source of bacteria and fungi that made the participants and their family members vulnerable to infections. 6 . 6 . 1 Washing clothes The participants described washing their clothes regularly with washing powder to kill the germs and prevent smells. I change my clothes every day. It is hot. If I do not change, I fear getting skin disease. I always wash my clothes with Fab (cold water detergent powder) in order to kill the germs and dry them in the sun at the back of the house… (R: 24/02/05). 6.6.2 Washing dishes Participants would wash dishes with liqui d solution after having a meal to prevent smells, avoid attracting ants and other insects and avoid infection. I eat with the family and when we have finished, I gather and wash the dishes immediately. I do not leave them about because ants and other insects soon come. I want to keep them clean and avoid infection…(C: 16/02/05 ). 111 6 . 6 . 3 Drying in the sunshin e Participants would dry washing and air things such as mattresses, pillows, blankets and mosquito nets in the sun in order to ki ll germs and insects and prevent smells. As one woman participant said: My house is well ventila ted with a lot of windows. When I open these, it is not hot. It is also clean because I clean and wipe every day so that I can even lie on the floor. There are no ants or other insects to trouble me. I wash the pillow-case, sheets and blanket every 3 weeks and air the mattress and pillow in the sunshine to kill germs and insects and prevent smells… (T: 17/05/ 0 5 ) 6 . 7 KEEPING WELL: Healthy behaviours Participants received advice from healthcare professionals and from family and friends about changing unhealthy habits or addictions and introducing healthy behaviours to maintain their well-being a nd prevent getting sick. After receiving knowledge and advice about their disease, they tried to do their best in order to be healthy and live a normal life. The concept of “healthy behaviours ” included the codes: s t o p pi n g the addict i o n , using condom s , prevent i n g accide n t s and injury to self . 6.7.1 Stopping the addiction Most participants smoked, and drank alc ohol before they were diagnosed with HIV/AIDS; and one participant used to take drugs and shared needles. Families and friends strongly encouraged participants to quit, or reduce, their smoking and alcohol usage in order to avoid getting sick again. My family does not want me to get sick again, they need me to have good behaviour. Quitting alcohol has been good for my health… (H: 11/03/05). 112 I revealed to the community that I have AIDS and my friends don’t encourage me to drink and smoke as before. My cousins even tell me to stop drinking and smoking to change my life. They are concerned about my health, they do not want me to get sick and I think they are very kind to me . Being a young man, I feel it is not too late to change my habits. I feel sorry for grandpa and grandma who are concerned for my life and wonder why I do not do anything good for them. Now I have given up the vices like drinking, smoking and drug-taking, maybe I can help them with some work… (P: 23/04/0 5 ). Some participants still drank alcohol and smoked cigarettes, but they reduced the amount and tried to stop. Sometimes I drink beer with my wife and friends when they visit to improve my appetite. I do not drink an excessive amount because I know it will lower my immunity and I will lose my health and get sick… (R: 24/02/05 ). Most participants stopped smoking and dri nking because they knew that these habits were not useful for their health. They wanted to be healthy and live longer with their family. 6.7.2 Using condoms (cide thung yang) Most participants were concerned about se xual relations and used condoms when they had sex with their partner because they did no t want to infect their partner with their virus. Some expressed awareness of differ ing strains (subtypes) of the HIV virus, others thought that the HIV virus was different from that of AIDS. When I have sex with my husband I use a condom. If I do not I will infect my husband with germ s. I do not want to do this because he only has the HIV infec tion but I am living with fully- 113 developed AIDS. I think my virus is more serious than his, and I do not want him to get AIDS… (E: 17/02/0 5 ). Some participants did not use condoms when they had sex, arguing that they already both had HIV/AIDS so what will happen will happen; although the decision was not necessarily a mutual one as illustrated below: I am concerned about our sex life. I want my husband to use a condom when we have sexual relatio ns but he does not like doing it because he said it is not natural. The cap over his penis robs him of the feeling and he is not hap py about it. He said it is not real. I cannot do anything about it because he gets what he wants. I am a woman and I dare no t refuse him. He said we are husband and wife together. Whatever is about to happen will surely take place… (B: 14/02/0 5 ). When I have sex with my husband, we sometimes use a condom, but mostly we do not, because we are both HIV/AIDS patients and my husband refuses to use it anyway. We are not concerned about the virus but just concerned a bout our life at the time so it makes us happy and we can forget everything. So we know what will happen but we do not care … (D: 16/02/ 0 5) . 6 . 7 . 3 Preventing acciden t s and injury to self Preventing accidents and injury to self referre d to participants’ awareness of risks of injury with sharp instruments that may ha rm them and jeopardize their future work opportunities. I am a barber; I cut hair. I do not worry about my job; I just make sure that I do not have any accidents with the instruments of my trade. I do not wear gloves but I take particular preventive care… (F: 17/02/0 5 ). 114 I work in the health centre; I am a cleaner. I clean everything such as cleaning the floor, beds, and washing the medical instruments by hand. I sometimes wear gloves to prevent the infection, sometimes do not wear gloves ……umm I take special care not to injure myself on the syringes, needles, blades and scissors… (U: 07/06/05). I take care of myself. When I wo rk I use a machete to cut the wood and during the cutting and also the carrying I have to take special care to prevent injury. I do not want to get ill and when I use a machete I would increase the level of caution… (Y: 01/07/05 ) . Participants appeared to be more concerned about risks to their own health from work-related injuries, than about the transm ission of the disease by exposure of others to their blood. 6 .8 KEEPING WELL: Getting healthcare services After being diagnosed with HIV/AIDS, par ticipants continued to seek healthcare services for their condition from the hospital. They believed that healthcare professionals in the hospital, such as doctors and nurses, could help them to get better from their condition, because they know about their problem. Participants expected that they could receive quali ty care from the hospital because of the progress of technology and medication at present, or in the future. The concept of “ getting health care services” includes the codes: consul t i n g healt h profe s s i o n a l s and visit i n g the clinic and following guidance. 6 . 8 . 1 Consulti n g health profes si o n a l s and visiti ng the clinic When participants were concerned about thei r health and illness, they went to the hospital to consult healthcare providers and visited the HIV/AIDS day care clinic, in order to receive quality car e and health education about HIV/AIDS. They believed 115 that visiting the clinic could help them learn more about their physical health, self- care and prevention of further illness. When I went to the hospital, I attended counselling about HIV/AIDS disease, and nurses taught me about its cause, its transmission and prevention, as well as self-care and prevention of illness from it. The nurses spoke politely without showing revulsion, and told me to take good care of myself, and to avoid sickness, that I have to face the disease head-on. And if I get abnormal symptoms, to hurry to see the doctor at the hospital. They recommended a check every 6 months, and for me to take the children there for a blood test. All this informa tion is helpful to me in my daily life to prevent sickness… (Q: 07/05/ 0 5 ). I do not take any medicine. The doctor told me that my white blood cell count was high (CD4+ greater than 500). I am healthy with no sickness or abnormal symptoms. I have never taken herbal medicine. The doctor told me that there is no herbal medicine to cure HIV/AIDS but there are herbal medicines to relieve some symptoms like fever, coughs and diarrhoea…… but I have never taken any … I go for a check-up at the hospital every 3 months and a blood cell count check (CD4+) every 6 months according to the doctor’s recommendation. I have never missed a check-up. I am concerned for my health. I do not want to get ill. If I get sick I don’t know who will bring money in for the family needs…(R: 24/02/0 5 ). 6.8.2 Following guidance Following their visits to the hospital clinic, participants strictly followed the guidance and recommendations of the health professionals because they believed that following the advice would enable them to maintain their life and have hope for the future. 116 I went to the hospital and was admitted for 10 days with AIDS- related symptoms. Before I was discharged I joined up with a group of HIV/AI D S patients at Cool Shade House for counselling and healh-promoting activities. I obtained many kinds of medicine to take home to treat opportunistic diseases and control the spread of the virus. The doctor told me my immunity was low (CD4+ of 1) and I had to take m any kinds of medicine following his recommendations. I cannot remember the names of them all. I thought that I would surely die if I did not continue going to the hospital and taking the medicines. I am alive today because of the medicines. I think I can be cured in the future sometime… (H: 03/04 / 0 5 ). I have never taken antiretroviral or other medicine because I have good immunity with my CD4+ at 315. The doctor urged me to take good care of myself regarding eating, exercising and having enough sleep. In that way, I could survive for a longer time comparable with the life expec tancy of people with diabetes, cancer and heart disease. So it was my choice whether to take good care of myself or not. I chose to take good care of myself following the nurse’s guidance and here I am today normal and healthy… (Q: 20/05/05). 6 . 9 KEEPING WELL: Attention to, and concern about, medication Participants mentioned that attention to, and concern about, medication was very important for them to control their diseases. The participants searched for the “right” medicines to cure their illness. Most particip ants used medicines to help them control the spread of the virus and to treat opportunistic infections. They used modern medicines that they got from the hospital because they believed that modern medicine would help them to get better after taking it . The participants strictly followed their healthcare provider’s instru ctions about taking antire troviral medications and medication for opportunistic infections because they needed to be cured of the 117 disease. The concept of “attention to, and concern about, medication” includes the codes: concern re the timing of medications, concer n re the dosage of medi ca t i on s and concern re the side effect s of medica t i o n s . 6.9.1 Concern re the time of medicati o n s Participants managed their disease by being concerned about the timing of medication. When they got serious symptoms they went to hospital to consult a doctor and the nurse advised them how to manage the medication to prevent getting sick again. They would take medicines on time because they did not want to get sick and suffer from drug resistance, and they wanted to be healthy and live longer with their family. Participants in this study learnt about the natural history of HIV infection and the association between the CD4+ T lymphoc yte count and illness, from healthcare providers who gave them information about the disease and medication. Participants understood that if their CD4+ T lymphocyte counts was less than 200 cells they had to get “ya taan virus” (antiretroviral drugs) medication to control the spread of the virus and also get “ya pong guun laee ruk sa rok tid chue chuey oo gard” (co- trimoxazole prophylaxis drug for preventable and treatable opportunistic infections). Therefore, participants would have to take medicines according to a regular timetable, and they adhered to it very strictly because it was very important to them. I have AIDS and I have to continue taking drugs. The doctor prescribed antiretroviral (GPO-vir) medicine for me in order to control the spread of the virus. I take it every day at 8.00 a.m. and 8.00 p.m. according to the doctor’s advice. If I stop or forget to take it, I will suffer from pathogen resistance and become sick again. So medicine is a necessity for me. It keeps me alive and strong enough to live long with my family… (C: 16/02/0 5 ). Although I know that everyone has to die someday, I do not know when. My wife insisted that I ta ke drugs but I did not take them. Then I found out that everyone who takes the drugs gets well, so I dared to get some for myself. Presently, I take medicine on time at 7.00 a.m. and 7.00 p.m. every day. I never forget to take it 118 because I do not want to get sick again. I want to continue taking medication because my health is gradually improving, with no fever, and no cough. I can work for my family, and some days, I visit others with HIV/AI D S at their home. We share our experiences of the disease, and I encourage them to face the disease squarely because some are in despair (K: 20/02/05 ). 6 . 9 . 2 Concern re the dosage of medicati o n s Participants managed their medication by being concerned about the dosage of medicines in order to prevent the symptoms’ recurrence and drug resistance. Although they took many kinds of medicine each time, they continued taking them following the treatment regimen that healthcare providers gave them. After they took medicine at the correct dosage, they felt better. Participants believed that medicines were good for helping them survive and to live with their family through to their old age. Therefore, participants would not forget even one dose of medicine because they needed to stay physically healthy. Moreove r, participants knew that their CD4+ T lymphocyte counts affected their body’s immu ne status and it was an index of the disease progression. As a result, the participants tried to observe the association between their conditions and the level of their CD 4+ T lymphocyte counts. T he doctor told me that I had AIDS and that it was incurable. He gave me Fluconazole (a fungicide ) to treat oral fungus and antiretroviral drugs to control th e spread of the virus because my CD4+ count was below 200. He made a monthly follow-up appointment as well. When I return ed home, I took seriously the doctor’s recommended drug dosages and followed them strictly. I am receiving good treatment and am encouraged by my parents and brother to face up to the disease… (E: 17/02/0 5 ). I first knew when I got AIDS-rel ated TB on my lungs. The doctor gave me anti-TB medication for 6 months (I forget the name of the drug), and also medication to prevent opportunistic diseases (Bactrim) and an antiretroviral drug, GPO-vir to control the 119 spread of the virus. Now I am on only GPO-vir medication because my CD4+ count is more than 200, it is 226. I have stopped taking Bactrim and have no complications from that… I am serious about taking the medicine because I do not want to promote resistance in the pathogens or to get sick, but I want to live with my family (husband, daughter and nephew) until my old age…(G: 18/02/0 5 ). 6.9.3 Concern re the side effects of medications Participants mentioned that they developed some side effects of antiretroviral medicines such as fatigue, nausea, vomiti ng, confusion, blurred vi sion, tiredness and inability to eat. Some partic ipants took care of themselves by drinking lemon juice, sleeping, eating bananas and drinking water; after that they felt well and could eat more. Some participants went to see a docto r after experiencing side effects from the medicine and the doctor changed the drug regimen for them enabling them to continue taking the drugs wit hout side effects. In the first week, I had some side effects after taki ng the medicine such as nausea and vomiting but I tried to treat myself by drinking lime juice and resti ng, and I felt better. Now I am normal and have no side effects (D: 16/02/0 5 ). The first time I took the drug, I experienced c onfusion, with blurred vision and lassitude. My thinking was dull and I looked like a deranged person. Once I woke at 2.00 a.m. and began cooking because I did not know what to do with myself. When I went to see the doctor at the hospital and told him my symptoms, he changed the drug to GPO-vir regimen. I take one tab at 7.00 a.m. and another at 7.00 p.m. After the doctor changed the medication, I have no reacti on and continue taking it… (E: 27/02/05). 120 121 People living with AIDS who take an antiretr oviral drug must continue to take it on time and regularly in order to maintain a constant drug level in the blood, to ensure such effectiveness as CD4+, a higher immunity level, weight increase, the absence of opportunistic diseases and reduction of HIV. In contrast, a l ack of discipline in taking the antiretroviral drugs may result in the virus becoming resistant to the drugs. Most of the side effects due to taking antiretroviral drugs are not severe to the point of causing death. In the first period of taking the drug, the patients may suffer such symptoms as headache, nausea and diarrhoea. Severe side effects that may result in death unless treatment is given are inflammation of the liver, numbness around the hands and feet, and kidney stones, whic h may occur at any period during the medication. Other long-lasting side effects that occur after a protracted period of medication (3-4 years) are a breakdown of fatty tissue and elevated blood sugar (Bartlett & Gallant, 2000; Thongsa-aad, 2004). 6 . 10 CONCLUSION The category “ keeping well ” represents the third st age of the basic social psychological process: “f r o m expe ri e n c i n g social disgus t to passing as normal ”. The category includes the concepts, religious practices, keeping a cheerful mind, self- treatment, taking care of the body, keeping the environment clean to prevent getting germs, healthy behaviours , getting healthcare services and attention to, and concern about, medication. These substantive concepts are in turn composed of in vivo codes, which detail the ways in which the participants adjusted their daily activities in order to promote their physical and emotional health and maintain their lives. All participants had to actively manage their conditions to sustain their health and recover from their illness. Keeping well resulted in many participants feeling and looking comparatively healthy, being able to work around the home or in positions that contributed to family income and being able to partake in activities that enabled them to define themselves as living a “normal” life. Living with HIV/AIDS in this manner enables the participants to feel empowered. The category of feeling empowered is addressed in the next chapter. CHAPTER SEVEN FEELING EMPOWERED 7.1 INTRODUCTION Feeling empowered for living refers to the positive energy that drives one to maintain and move forward with one’s life, which arises from having the will to live and the ability to cope with life’s problems. Although they were confronting significant health and social problems, the participants made the decision to live and not quit. They took strength from people in societ y who were accepting of their illness and drew motivation for living and hope for the future from their families. “Feeling empowered” could be seen through the concepts being encouraged, acknowledging the disease, social acceptance, tamjai (make mind up), feelin g proud of self, feeling good about li fe, feeling lucky and having hope ( Figure 7-1). People living with HIV/AIDS became self-empowered to f ace difficulties in their current and future life. They used various strategies and social interaction processes to achieve self- empowerment. 7 .2 FEELING EMPOWERED: Being encouraged Being encouraged (khum lang jai) refers to the strength of mind that drives one to live. The participants said that encouragement was important for them to survive, and that if they did not have encouragement they could not survive. Participants also said that encouragement came from within themselves and from other sources. The concept of “being encouraged” included the codes s e l f and family, neighb o u r s , f r i e n d s a n d PLWHA network groups , and health profe s s i o na l s : all people who knew them and encouraged them to have a positive attitude toward life. 7 . 2 . 1 Self e nc o u r a g e d Some of the positive energy that drove par ticipants to maintain and move forward with their lives arose from having the will to live for their children’s sake; participants thus encouraged themselves to think positively, to calm down and feel 122 courage, to look after themselves and to do what was necessary in their situation to survive. Feeling Empowered Personal and social acceptance of illness Social acceptance >Family >Neighbours >Friends and PLWH A network groups >Health professionals Feeling lucky >Have a chance to receive healthcare service >Have a chance to get ya taan virus >Have a chance to get a job Acknowledging the disease >Illness is chronic >Symptom management Tam jai >Plong >Karma >Let it go Feeling proud of self >Having a role in society >Self- value >Maintaining work routine Feeling good about life >Love, caring and concern >Close with family >Being healthy Being encouraged >Self >Family >Neighbours >Friends and PLWH A network groups >Health professionals Having hope > Hope for new treatment and cure > Hope for living longer with family >Hope to live to see children grow up and have a future >Hope for job Figure 7-1: Core Category-Feeling Empowered, Concepts and Codes. 123 W hen my husband died from AIDS I had to encourage myself to face the situation I was in. I had to help my mother rather than my husband in the rice fields. I had to stand on my own two feet and do everything to earn money for the family to live. I never feel hopeless if I am al ive, and I never expect an yone else to help me. To stay alive I try to take good care of myself and do not think about my disease. I need to stay living with my mother and daughter, my daughter is only 13 years old… (I: 05/05/05). I am energised to fight the dise ase because I am now healthy, with no symptoms. I do not dwell on it in my mind too much. I need to stay alive to look afte r my children. My children are my life and if I die I have no idea w ho will look after them. So I have to rouse myself and do the best things to keep alive… (U: 17/05/ 0 5 ). 7.2.2 Family encouraged The participants said family members–including husbands, children, mothers, brothers, sisters and other relatives–were im portant sources of encouragement. Their families encouraged them to have courage to face the disease and pushed them to take care of themselves to maintain their own health and for the sake of their families. I was depressed because of my disease. I wanted to die, but my wife and daughter rallied me to stand against the disease and they encouraged me to take medicine to stay alive. They have done everything to mainta in life. They told me not to be afraid to die, but that I would live with them because they would look after me forever… (H: 18/03/0 5 ). My family (dad, mum, sister, brother, brother-in-law and cousins) helped me and my husband until he died. After my husband died, they let me and our ch ildren live with them, gave me power and encouraged me to fight the disease…They did not 124 leave me alone, they support me in everything I want…they encouraged me to stay alive w ith them, although AIDS was not cured… I don’t think too much. I am healthy and can survive for a long time like other AIDS patie nts who have lived for 10 years and still look healthy… (Q: 20/05/05 ) . 7 . 2 . 3 Neighbours encourag e d The participants said neighbours were another source of encouragement because some neighbours understood them and were willing to listen, to comfort and to give advice about their problems, in addition to their practical help described in Chapter Five (section 5.2.3). Neighbours also encouraged them to face the situation to sustain their life. My neighbours gave encouragement to me to stand against the disease because I felt despairing over it. They supported me in such a way that their words may have cured me. They came to talk and advise me. I did not f eel lonely because they were friendly and showed concern for me… (E: 27/02/0 5 ). Some neighbours came to visit me and my family at home even though we are a poor family… they sa id to look after myself and do not think too much about it. Then my condition would be better. I had the willpower to do it because they were not disgusted with me…After that I felt better because the neighbours understood me and I stopped doing the bad things I used to do before, and I began to take good care of myself and to live a settled and normal life w ith my wife… (Y: 1/07/05 ). 7.2.4 Friends and PLWHA network group encourag e d The participants said that their friends came to ask them about their problem, and other people living with HIV/AIDS also visite d them at home to talk, and shared their feelings and experience about the disease a nd gave them comfort and made them feel 125 better about their life, as earlier discussed (section 5.3.3). In addition, friends and PLWHA reinforced the need to stay alive because of their family. When I first knew that I was infected with the HIV/AIDS virus, I felt discouraged, depressed and di d not know what I should do. My friends, who were in the same situation, came to visit me at home and advised me to fight the disease and urged me to join them at the Cool Shade House- Baan rom yen (HIV/AID S day care clinic). We had to participate in many activities there. I have a lot of friends who understand me; I am now not discouraged and indeed am happily living with the family (DD: 25/04/ 0 5 ). I knew AIDS was a severe disease and those who got AIDS would die soon. I felt hopeless and did not take care of myself until a friend came to visit me at home and they said to me, do not fear death, it was not always death. Many with AIDS could live longer. They encouraged me to take care of myself and continue taking the medications…Then I would get better and be strong…They always came visi ting me at home… They wanted me to stay alive with the family…because they pitied my mother (W: 3/06/05). 7.2.5 Health profess i o n a l s e n c o u r a ge d The participants said that health professionals gave them encouragement to face the disease and other problems in addition to giving information and advice (section 5.3.4). They particularly valued the home visits by nurses who did not look down on them, but showed concern about their lif e and their families, listened to their problems and gave them advice about their disease. I think when the nurses came visiting my family, I dared to talk and consult them about my condition. I felt better to talk with them. They also asked about, and li stened to, my problems. They 126 gave me the advice about disease and warned me to go to follow-up every time. I felt happy with them because they were good conversations with concern about me and my family life… (K: 06/03/ 0 5 ). Receiving encouragement from others helped people with HIV/AIDS to feel better about themselves, to find meaning in thei r lives and gain a sense of control and restore their self-esteem. Encouragemen t increases the ability of people with HIV/AIDS to confront their situation in their everyday life (C iambrone, 2002; Junda, 2004; Phengjard et al., 2002). 7 . 3 FEELING EMPOWERED: Acknowledging the disease The concept of “acknowledging the disease” as a part of their lives took place after the participants learnt that the disease could not be cured, but was not quickly fatal (easy to die from) as they had earlier feared and despaired. The participants accepted that the illness had happened to them and that it was a chronic illness, like diabetes, hypertension, or cancer. The concept of “acknowledging the disease” included the codes i l l n e ss is chron i c and symptom manag e m e n t . 7 . 3 . 1 Illness is chronic The participants acknowledged that AIDS wa s a chronic illness when they learned from their experiences with AIDS that they were not able to get rid of their illness. However, medicines were available to cure th e opportunistic infections that related to the AIDS disease, such as tuberculosis, meningitis and oral fungus, so that the participants could manage their illness if they had knowledge and took good care of themselves. Moreover, participants compared AIDS to other serious illnesses, such as diabetes mellitus, heart disease, hypertens ion and cancer; they believed that AIDS was one of the deadliest diseases and had long-term co mplications, which required life-long treatment. I have learned that AIDS is one of the most deadly diseases, and if I take good care of myself, I can live longer because I saw 127 some AIDS person live longer for 16 years and he looked healthy like normal people. Now I think that it is as chronic a disease as “bouw waan” (Diabetes mellitus) and “kuam done lo hid sung” (Hypertension), so th ere is no cure for the AIDS disease… (A: 13 /02 /05). Now I view this disease as a chronic disease, although HIV/AIDS is not curable, but “roke tid chue chuy oo gard” (opportunistic diseases), which happen with HIV/ AIDS patients, are curable; HIV/AID S patients can live longer like “bouw waan” (diabetes mellitus) patients. I learn about my disease from my experience and my fr iends who are in the same situation; I know how to take care of myself to prevent illness to maintain my life. I am now still able to work as well as engage in daily activities… (P: 06/03/05 ). The transition of HIV/AIDS from an acute terminal illness to a chronic illness (Vyavaharkar et al., 2007) enabled particip ants to think more positively about their illness because they recognised that the symptoms were treatable and, although HIV/AIDS was a serious disease, people with HIV/AIDS were not always sick. 7.3.2 Symptom manageme n t Physical symptoms were more dominant and easily noticeable in people living with HIV/AIDS. Most of the participants l ooked physically healthy. However, many of them had had a serious illness associated with HIV/AIDS-related symptoms, so they had experienced admission to the hospital and learnt to take care of themselves when they had symptoms at home. They sometimes took care of their symptoms by using both modern medicines and herbal medicines as previously discussed (section 6.4). Most participants knew how to treat themselves because they had knowledge from their own experience, friends, and health care providers. Participants reported managing symptoms of fever and headache, diarrhoea, leg pain, cough, skin problems and oral fungus. The following examples of self-care strategies were effective in managing a range of symptoms. The participants based their actions on previous 128 advice from nurses and acted in the knowledge that if the symptoms did not improve they were able to go to see the doctor at the hospital. I had three times “tong sia” (diarrhoea), “hark” (vomiting) one time also “puad tong” (abdominal pain). I did not take medicine but I stopped eating food, except I mixed salt, and sugar in water and drank it a lot until my symptoms disappeared. I knew how to take care of myself because “mor” (nurse) told me how when I went to the hospital… (A: 13/03/ 0 5 ). When I had a cough, I did everything a nurse told me. I drank a lot of warm water. I drank lemon juice and anti-cough syrup. I stopped having oily food, it ga ve me an itchy throat and more cough. If I did not feel better I would go to see a doctor… (G: 04/03/ 0 5 ). A woman who had leg pain from her long days serving noodles in the noodle shop treated her symptoms with a non-steroidal anti-inflamm atory drug bought from the drug store. I had leg pain from working, I walked long days I used “ya nuad gaee puad” (diclofenac gel) to rub my legs and used “pah pan phae” (bandage) to support them when I slept. I always lifted up the legs, after that I felt better. If I got worse I would go to see a doctor… (L: 26/02/05). One participant had an allerg ic reaction from having seafood and treated himself with herbs and an antihistamine drug bought from the drug store before bed 1 tab per oral. I got rash and itchy all over my body, I stopped having seafood, I took a bath with herb water and used “kha min luang” (herb) to paint on body and took anti-itch ing medicine for 10 days then the symptoms disappeared … (Y: 17/04/0 5 ). 129 Some participants had complications from HIV/AIDS and they managed symptoms themselves, as one participant described: I was concerned about my oral cavity because I often got “chue ra nai parg, ron nai” (oral fungus, glossitis). I had special mouth wash with” nam ya buan par k” (antiseptic solution) 2 times a day in the morning and before going to bed, I always mix salt in water and gargle the mout h after having a meal, and I stopped having spicy food. Now I have no oral fungus and I continue to gargle my mouth with salt water every day to prevent getting fungus… (P: 06/03/0 5 ). Most people living with HIV/AI DS perceived that in the fu ture they would confront numerous symptoms associated with the disease or the side effects from medication. Symptom management for people living with HIV/AIDS includes prevention, promotion, assessment and treatment of symptoms (Bunch, 2004). Enhancing the self-care knowledge of people with HIV/AIDS has been reported to improve their abilities to deal with their symptoms (Chiou et al., 2004). 7.4 FEELING EMPOWERED: Social acceptance Social acceptance refers to the relationships between the participants and their families, their neighbours, their friends and people living with HIV/AIDS network groups and health professionals. Participants needed to find social acceptance and understanding from at least one source in order to move forward with their lives. Thus, receiving social acceptance, understand ing and care from others, helped the participants to feel comfortable and happy in life. The concept of “social acceptance” included the codes f am i l y , neighb o u r s , friends and PLWHA network groups and health profes s i o n a l s . 7.4.1 Family The majority of participants said that their families now accept and understand them, although as–outlined in Chapter Five (sect ions 5.2.4 and 5.3.1)–participants had to 130 make choices about disclosing their illness to family in order to receive their support. They received security, comfort, and love from their families who made them feel safe and happy, and empowered to take care of themselves in order to survive. I feel happy with my family because they understand me and my husband. They love us and let us li ve together with them. We have always talked about everyt hing and have a meal together every day in the evening. I feel safe with life, I am not afraid of dying although I have lived with HIV/AIDS for 6 years, because I have warmth from my family, I can do everything. I am careful about myself I know this disease is uncertain, it depends on the symptoms, I now have no symptoms… (E: 17/02/0 5 ). 7.4.2 Neighbours Good relationships with their neighbours we re important to participants. Neighbours demonstrated social acceptance of participants by coming to talk with them either at home or during activities in the community. Social acceptance by neighbours enabled participants to participate in community activities without fear of rejection and influenced their self-esteem. Social acceptan ce was a prerequisite for social support (section 5.3.2), the latter bei ng expressed in ways that are more practical. When neighbours showed social acceptance they treated the participants as normal people; for example in the second quotation below, neighbours asked about the participant’s work, not about his disease. Today my neighbours and other peopl e came to talk to me while the monk had breakfast. After the monk had had breakfast and finished praying, we enjoyed eating together at the temple. I felt better and happy because they accepted me, they did not show disgust with me…the next time I will go to the temple again (A: 13/02/ 0 5 ). When I stay at my wife’s parents’ house, my neighbours come to talk with me, and ask me about my work; they don’t talk about 131 my disease. I am not pained by neighbours, nobody hates me, and I feel good and dare to talk to them. They don’t hurt me, I feel happy and live activel y, I can manage myself in my daily life (F: 17/02/05). 7.4.3 Friends and PLWHA network groups Participants said that their friends and PLWHA network groups had positive feelings toward them, and showed mutual understand ing and acceptance. Participants reported receiving close attention from their friends and PLWHA networks groups, so that they never felt alone. I have lots of friends in the same situation who come to see me at home and we understand that together we can share our experiences about the disease, the feelings, behaviours and everything that happens to us. This is useful for me. And I know how to manage myself to keep myself alive, I never feel alone (C: 16/02/ 0 5 ). When I get sick I feel hopele ss and I do nothing. The PLWHA network groups come to visit and be near me at home. They take care of me and remind me to take medicine to prevent serious illness and they tell me about their experiences from AIDS, that they nearly died, but they don’t w ant to die-and therefore take care of themselves until they look good like nor mal people. They make me hopeful to fight fo r my life… (I: 06/03/0 5 ). 7 . 4 . 4 Health profess i o n a l s The participants said they received power from the health professionals who showed that they accepted them by their style of communication, friendliness and accessibility and the absence of social disgust. Health professionals understood their problems and their feelings, and gave them advice to help them to stay alive. 132 When I went to hospital, nurses ask me and talk to me about my health problems and my daily activi ties; they also told me how I should take care of myself to survive. They accept me and told me if I have a problem, I can come to talk to them at the hospital or phone them at home. I am happy when I go to hospital, because they are friendly, have good communication, and do not look down or show disgust to me… (G: 18/02/05). Social acceptance of people living with HIV/ AIDS is a necessity that influences the participants’ actions in working and liv ing in the community with complete disclosure (Namjantra, Hanucharurnkul , Panpakdee, Kompayak, & Sitthimongkol, 2003). 7.5 FEELING EMPOWERED: Tamjai Tamjai (make one’s mind up) is a method of dealing with one’s own thoughts and feelings when facing uncomfortable circumstances so that people living with HIV/AIDS could accept the situation that was happening, which led to a temporary peace of mind. When the participants had problems, they faced up to them by accepting that they had problems and they looked for the best way to solve them. The concept of “Tamjai” included the codes p l o n g , k a r m a and let it go. Tamjai (make one’s mind up) is very important fo r Thai people living with HIV/AIDS. 7 . 5 . 1 Plong (accept i n g the situati o n ) The participants accept the situation, and can manage their lives and lifestyle so that they can face and solve their problems by using reasons to explain the circumstances that have occurred. So the participants used plong to get rid of negative feelings or thinking. When I first knew I got HIV infection I felt sad and hopeless but I try to “plong” (accepting the situation). I accept myself and have to be strong. I am lucky because I have no children, I do not worry and do not care…I just care about my life; I must take 133 good care of myself. Now I live with my father, I help my father do work because he is older… (S: 02/05/0 5 ). I accept myself and can live with HIV. I live normally in a village because I have no sympto ms. I can work hard and I am happy with my family, I do not think about my disease because when the time comes, all people must die, including me…I plong already…I try to do the best fo r my children and my mother… (T: 17/05/0 5 ) . All participants felt sad and unhappy when HIV/AIDS happened to them. They tried to make up their mind (tamjai) and to accept their situation (plong) . These strategies enabled them to forget about the disease, not think too much and accept themselves. People with HIV/AIDS can control their though ts, their feelings and make the best of living with HIV/AIDS (Sangchart, 1997). According to Namjantra et al. (2003), tamjai is composed of four modes including trying not to think, thinking positively, accepting and plong , which was crucial in gaining control of themselves and their feelings in such an event that brought great harm and loss to them as being HIV/AIDS. 7.5.2 Karma As briefly addressed in Chapter Six (section 6.2.1), most participants believed that illnesses are the outcome of karma and for some participants “making their mind up” may reflect an acceptance because of their belief in karma. Participants believed in the law of karma in the past life and the next life. If people do good things, more good will come back to them. If they do bad th ings, something bad will happen to them later. Participants found it useful to think of their disease as their karma, because it eased their minds and they felt better. I felt sad when I knew I got HIV infection… my karma. My old karma (karma khow). I do not know what I did in the previous life. Now I can manage the problem s which will occur in my life 134 with a positive outlook. I have de termined in my mind not to think about it… (I: 19/03/0 5 ). When I told my parents and sist er that I had AIDS, they were very sad and upset with me. My mother said it was my karma which caused me to have sexual relations before I was married (A: 13 /02 /05). According to Sangchart (1997) , Thai people believe in karma and may perceive that people living with HIV/AIDS have been in fected with the virus because of their karma, which is the consequence of their ow n or other family members’ actions. Moreover, most Thai people ar e Buddhists who believe in “ karma” (the law of cause and effect) (Choowattanapakorn, 1999; Ford & Koetsawang, 1991; Thongprateep, 2000). Buddhism teaches that illness is caused by a “person’s karma (action)” (Junda, 2004). Thus, the law of “karma” helps people to understand their own health situation (Klunklin, 2001, Klunklin & Greenwood, 2005a, 2005b). 7.5.3 Let it go (Ploy mun pai ) Participants described their belief in letting go by explaining that it is an important strategy to enable living without worry, concern, problem s and conflicts, which will happen. Nobody can stop it, so they do not want to cling to anything. Letting it go can help them to feel a calm mind, comf orted and happy in every condition. I am not without hope, even t hough my husband’s family (father, mother, brother and sister in-law ) have rejected us and leave us alone. I fight for my family, I have put it out of my mind, and do not think about it. If I think about it, I become unhappy and tired. I have let it… go (G: 18/02/ 0 5 ). I have a good point, I do not pond er it too much, I don’t think about my disease, I do not have concern about other people gossiping about me or rejecting me, I let it go…. I am just 135 concerned about my family and working daily to earn a living for us… (I: 19/03/ 0 5 ). Participants stopped thinking and talking about HIV/AI DS because it was not good for their health. Most participants viewed th eir situation in a positive light. They kept positive thinking by letting go of thoughts about AIDS. They felt comfortable and could live with having AIDS. Consistent with the study by Na mjantra et al. (2003), participants thought about life and death, fo llowed by realising the reality of the uncertainty of life; that everybody must die some day when the time comes. After that realisation, participants made the decision to let it go; when they could accept their situation they tried to focus on the present rather than the past. 7.6 FEELING EMPOWERED: Feeling proud of self Feeling proud of self refers to realising that one’s life has meaning and this comes from perceiving one’s self-esteem and ha ving pride in oneself. The concept “feeling proud of self” includes the codes having a role in society, self-value, and maintai n i n g work routin e s . 7 . 6 . 1 Having a role in society Having a role in society refers to the ab ility to do good things for other people or families and communities. Participants said that their role in society came from their knowledge, and their abilities which had le d to accomplishment in work, so their knowledge and abilities help ed the participants to feel proud of themselves. I often participate in soci al activities, such as a temple fair or a New Year celebration with my friends; I play a drum, sing and dance….I like it. It lifts my sp irits, mind, and also I get some money, 200 baht per time, to help with living. Next month I am booked to play the drum in a procession for robe-giving ceremony “tod pah pa” (Buddhist activ ity) at a temple in Loei Province. I am very proud of myself because I have a role in society. I sometimes I go with health personnel as a music- 136 player. I have a role in society. I feel I have value because they accept me and I can bring enjoymen t to their lives. I feel happy with my life and proud of myself… (F: 17/02/05 ). I have a role in society as a person living with AIDS volunteer. I visited AIDS patients at home, giving them information about AIDS and sharing my experiences with them. I was very proud of myself because I could help other AIDS patients both face their disease, and reduce stre ss by talking with them and encouraging them to survive as I have done. I go on home visits every Tuesday (K: 06/03/ 0 5 ). Field note: when he talks about other AIDS patients he looks proud and very confident (keeps smiling)…. He is sure that he contributes signific antly to people living with AIDS… (K: 06/03/0 5 ). Finding new roles in society, following the lo ss of work and loss of self-worth that resulted from being diagnosed with HIV/AI DS (section 4.4.2), led to a renewed sense of self-value. 7 . 6 . 2 Self- value Participants said that self-value came from making good use of their knowledge and competence to help themselves and their society. They realised that their families, friends and neighbours depend on them, and r eceive love and care from their families and friends, which made the participan ts feel that they had self-value. Before I had AIDS, I could work outside and got money 4,500 baht per month, for a living for the family. But now I have to stay home or stroll out to the fields where there is not a lot to do. My daily tasks are light. But I am still very proud and feel valuable that I can work. Although I can not earn money for the family, I can help them do some work. My father said to me, “Don’t worry about work and money because your brother-in-law and I 137 can earn the money for our familie s. You need to take care of yourself”… (A: 13 /02 /05). I enjoy working, I own my own hair-cutting business, I earn small money between 200 and 400 baht per day working every day from 9.00 a.m. -5.00 p.m. Although I have the HIV infection yet I can still work and earn m oney. I am very proud that I do not depend on other people, e xcept for my wife who cooks and washes the clothes for me. I st and on my own two feet; I have a sense of self-worth… (F: 17/03/05 ). I am very proud of myself. Althoug h I have AIDS I join with a group of women in the village producing sticky rice containers, flowers and vases for sale in th e village. I make about 1,000 to 1,500 baht per month to live on. I feel happy and feel self- valuable (mee khun kah) because I can work and earn money without depending on others… (T: 03/05/0 5 ). 7.6.3 Maintainin g work routine s Participants tried to maintain a work routin e to promote themselves and their families. They felt proud of themselves because they can work and earn money. In contrast, some participants kept up a work routin e at home although they could not go out to get a job because of the disease. I do not worry about work, I can help my father carry bamboo woods to make kraae mai phi (the bamboo tables) at home. I think I work hard sometimes, but nothing is happening to me. I am still normal and continue wo rking. I was proud of myself because I can work…better than nothing to do…(C: 16/02/05). I go to work in a noodle shop in the city ever y day from 7.00 a.m. to 5.00 p.m. I do everything from buying the ingredients, making the noodles and serving them, serving cold drinks, acting 138 as cashier, washing up and closing the shop. I am so busy all day that I forget about my dise ase and am happy in my work, bringing home 150-180 baht each day. After work, I buy food and travel 12 km home where I re st up with my mother, son and husband. I feel I live a normal life . Even though I have AIDS, I can work. I am proud of myself because I can earn money for the family, I feel that I am the he ad of the family… (L: 26/05/0 5 ) . I went to work at sa tha nee a na mai (health centre) in a village every day from 8.00 a.m. to 4.00 p.m. I helped a healthcare provider to do supplies, clean the health centre and the medical equipment, I felt proud of myself, although I have AIDS, but I had a chance to work… (U: 10/06/ 0 5 ). Most participants felt proud of themselves because they could stand on their own two feet and continue working to support themselv es and their families. Some participants dedicated themselves to working for othe rs who had HIV/AIDS by home visiting and giving advice about their experiences of living with HIV/AIDS. These findings confirm those of Namjantra et al. (2003), th at people living with HIV/AIDS felt self- worth and were proud of themselves because they were dedicated and continued working for other infected persons, their community and their society. As identified in Chapter Six (section 6.3.1), participants who did not return to work engaged in recreation activities that provided interaction with others in their community and supported their sense of acceptance and self-worth. 7.7 FEELING EMPOWERED: Feeling good about life The majority of participants in this study we re satisfied with their life at present. Perceived family support (as addressed in s ection 7.4.1), and the ability to manage the impact of HIV/AIDS on their health, played an important part in their feeling good about life. The concept of “feeling good about life” included the codes love, caring and concern, c l o s e with family a nd being healthy. 139 7 . 7 . 1 Love, caring and concern Love, caring and concern refer to the relationships within the family which are bound in love, concern, and caring. The participan ts described bonding with their family members. These persons were their support and were very protective of the participant. They were willing to do anything for each other. The family bond, as a result, provided security, comfort and happine ss to the participants. Some participants received love, caring and concern from their families, for example: Previously, my parents and relative s did not want me to go out. They did not want others to know that I had AIDS. They love me and are concerned about me becaus e they thought this disease was socially unacceptable, and that the gossiping would make me unhappy. They did not want me to be hurt. When I was sick my sister took me to the hosp ital, she was concerned about me. And I know my parents’ and sisters’ concern about me comes from their love for me. When I am sick, they help me by washing my clothes, cooking for me and generally looking after me until I get better. They never leave me… (C: 16/02/ 0 5 ). My wife and daughter forbade my working hard because of their love and concern for me. They wanted me to stay alive and be with them for a long time. They knew this disease brings low immunity and I could beco me ill… (H: 18/02/05). 7 . 7 . 2 Close with family Participants said that they need to be close to their families; they do not want to be separated from their families. They need their families to treat them as normal. When participants have a health problem or other problems their families can look after them and they can talk and consult about everything with their families. Moreover the participants can join the families’ activities as normal people can. When my mother knew I had AID S, she did not blame me and let me live together with them. E verybody in my family is not 140 disgusted with me. We eat together and sometimes I cook for them. We are a close family and they all have a positive attitude toward me. In the evening, during dinner my family and I like to watch television news and dram a until 9.30 p.m. we enjoy discussing the actors and actresse s in the drama, especially the love stories…(C: 16/02/0 5 ). I feel good about life. When I hav e a problem, I can talk with mum, dad and other family members, I can consult with them all the time. We live together, are a big family and we have close relationships. I can talk about any thing with them and they will help me. They have already told me not to worry about anything, that they will look after me and my children, that I am a part of their family. They will not leav e me and my children to stand alone… (Q: 20/05/ 0 5 ). The desire to be part of a family and to be treated as normal was also evidenced by participants’ choices to re marry and have a child in order to have a normal life (sections 5.4.1-5.4.3). 7.7.3 Being healthy Participants said they are healthy; they have no signs or symptoms– a consequence of their attention to taking care of their body (section 6.5). They take care of themselves and they can do everything like normal pe ople can. Being healthy makes them feel good about their life, forget the dise ase and they can also live longer. Now I am not sick I have no symptoms, I have a normal life. I can do everything that other peop le can…. I look healthy and very strong… (K: 06/03/0 5 ). I am concerned that I am a good person. Normally I never drink alcohol, never smoke cigarettes and never have raw food, I am healthy like normal people… (Q: 20/05/ 0 5 ). 141 Feeling good about life is pa rticularly important for people living with HIV/AIDS. Most participants mentioned feeling sati sfied and happy with their family members and other providers who expressed love, care and concer n for them, because they can–and do–manage better with the stress of their disease and stay healthy and can live longer in society (Edwards, 2006: Rutledge & Abell, 2005). In Thai culture, most people living with HIV/AIDS are cared fo r by family members and others and are supported because of love, bonding and oblig ation (Chitwarakorn, 2003: Phengjard et al., 2002). Most people living with HIV/AIDS eventually end up living with parents at the terminal stage of their sickness a nd parents usually take care of, and support, them (Knodel & Saengtienchai, 2005). 7.8 FEELING EMPOWERED: Feeling lucky Feeling lucky refers to partic ipants’ responses to receiving care and support from the healthcare system, or other places, to give them a chance to stay alive and reduce their suffering from physical, emotiona l and economic problems–although they are poor people. The concept of “feeling lucky” includes the codes h a v e a chance to recei v e the healt h c a r e servi c e s , have a chance to get ya taan virus (antiretroviral medici n e s ) , and have a chance to get a job . They had an opportunity to obtain those things that make them feel good and can maintain their health to live in society. 7.8.1 Have a chance to receiv e the healthc a r e servic e Participants said that they can use their rights to access the healthcare system because of the health policy scheme that covers the treatment and care for Thai people by using a 30 baht healthcare gold card per vis it, which was the scheme that the Thai government offered for all Thai people who did not have physical access to any health or welfare services. The participants said they felt lucky because this welfare now provided healthcare expenses for every disease, including HIV/AIDS disease. Participants could utilise the healthcare service that covered the provision of prevention of illness from opportunistic infection and health promotion for HIV/AIDS. For example, their rights to most health welfare did cover blood tests and they could receive prophylactic medicines to prevent opportunistic infections. They 142 thought the healthcare policy schemes gave a chance for them to maintain their lives, although they were poor people. Now people with HIV/ AID S can access healthcare services because the government gives us the opportunity. Even me! I am lucky to stay alive… (D: 26/02/0 5 ). 7 . 8 . 2 Have a chance to get ya taan virus ( a n t i r e t r o v i r al drugs ) Participants said that they were very lucky to be able to obtain ya taan virus (antiretroviral drugs) to control the spread of the virus and it made them feel better, because of the public healthcare scheme, or the 30 baht gold card which covered the treatment with anti retroviral medications. Participants knew that ya taan virus (antiretroviral drugs) are very expensive, they could not buy them, because they were poor. Participants said that if they didn’t get ya taan vi rus they might die, or get a serious illness. They could stay alive although they were poor. Present government policy is that treatment with ya taan virus (antiretroviral medicine) can be provided for poor AIDS patients like myself using the 30 baht health care card, I am now lucky even though I am a poor person, because I can access health care services and survive because of the medicine… (A: 13 /02 /05). Participants were at risk of HIV inf ection by sexual transmission between husband and wife. Two female participants got pregnant and attended the antenatal care clinic. They had a routine blood test for VDRL a nd HIV infection. They then knew, by the results of blood tests, that they had HIV infection transmitted from their husbands who had passed away from TB. During pre gnancy they received antiretroviral therapy in order to prevent HIV transmission from the mother to the child, until they delivered. Moreover, female participants received powdered milk to feed their children for two years. They feel that they are lucky to receive treatment and care free from the hospital. If they did not receive treatment and care free from the hospital, 143 they thought they and their children had to die for sure because they were poor and had no money to pay for the treatment. During pregnancy I could get antiret roviral medicine from late pregnancy until birth. I fed the child with powdered milk for 2 years. I obtained the powdered m ilk from the hospital free. Now my daughter is normal ... (D: 26/02/0 5 ). I was not afraid of dying because I was lucky. Although I was poor I could get the antiretroviral drug from the hospital and stay alive. In the past, my frie nds all died because they had no money for treatment, which was expensive and the government had no health policy scheme for AIDS people… (D: 17/03/05). As discussed in Chapter One, the availabi lity of antiretroviral medication under the 30 baht healthcare policy scheme in Th ailand since 2005 ha s transformed the treatment options and hope for the future for people with HIV/ AIDS. Thus people living with HIV/AIDS are living longer due to recent advances in antiretroviral treatments (Stein & Rotheram-Borus, 2004). 7 . 8 . 3 Have a chance to get a job Some participants secured a job in th e hospital, or were supported by Non- Government Organisations and friends to he lp them have income to maintain their life. They were not without hope because they had a chance to get a job from healthcare providers to work in the hosp ital day by day and earned money, about 120 baht per day. They worked during the day time from 8.00 a.m. - 4.00 p.m . When I go to the hos pital, doctors and nur ses help me, and educate me regarding my disease. In particular, they give me power and encourage me to stay alive and to fa ce the disease. They also gave me a job as cleane r in the operation room, I earn 2,400 baht per month… (K: 06/03/05). 144 One participant got support from a Non-G overnment Organisati on (NGO) by training for a job and obtaining a loan, about 12,000 ba ht, to own a business to maintain his life. I am lucky in having an opportunity to do a vocational training course with an NGO. I own my own hair-cutting business now, and earn a modest 200-400 baht per day. I work every day of the week from 9.00 a.m. to 5 p.m. Although I have the HIV infection, I can work and earn money. The NGO granted me 12,000 baht to fund my business set-up costs, and I have been operating 3 years now, in another village 30 kilo metres from my home… (F: 17/02/0 5 ). One participant obtained support from his friend’s cousin. He felt lucky to stay free in his friend’s cousins house and be given a job by his friend. When my wife got AIDS, I got HIV infection. My wife lacked a job because of illness and I coul d not work because I was caring for her. I did not have enough mon ey to live on. I sold everything to stay alive. I looked for a job. In the end, I was lucky because a friend’s cousin employed me to look after his house and invited me to sell puddings if I want to. I then began a new life selling puddings until now. Although it is not a permanent job, it provides a living of 200-30 0 baht per day. I cannot stop selling. If I did, I would have no money. It is a tough time. But I must be patient for the sake of my family (mother, wife and daughter), especially my daughter. It is esse ntial for me that she gets a higher education and job before I die. I have to survive and earn money day by day for my daughter. With a bit of luck, I might win a lottery… (R: 24/02/0 5 ). In Thailand, people living with HIV/AIDS have a chance to work with some hospitals in the follow up, home visit, information distribution and counselling with other patients and those who are affected by AIDS (Thongsa-aad, 2004). 145 7 . 9 FEELING EMPOWERED: Having hope All participants in this study lived with hope for positive changes and good things to happen in the future. Moreover, participants perceived that hope was essential to their life because having hope helps them to manage their disease and they can go on with life and living with HIV/AIDS. Participants described their hope for a better future for themselves and their families. The concept of “having hope” included the codes h o p e for new treatmen t and cure, hope for liv ing longer with family , hope to live to see childre n grow up and have a future, and hope for job. 7 . 9 . 1 Hope for new treatme n t and cure All participants with HIV/AIDS hoped that in the future this disease will be curable. They reasoned that now there are medicines to treat other diseases related to AIDS, so why in the future should there not be medicine to cure AIDS?. Participants think that the doctors are clever and with new technology they may detect new drugs to treat HIV/AIDS disease in the future. At first, when I knew I had AIDS, I must die for sure because AIDS was not curable. At the present, I receive treatment. I take three drugs, GPO-vir, Bactrim and Fuconazole to treat my symptoms. I make sure I can survive because my health has improved after I continued taking drugs and I think I may not die and in the future I will get a new dr ug that can cure (Y: 1/07/05). I have been infected since 1992 and developed to AIDS in 1997. I got chronic diarrhoea and headache. I was admitted to the hospital 3 times. My mother sought medical treatment information from others and bought “ya samoon prai” (herbal medicines) for me until money ran out. By 1999, I had enrolled with some herbal medicines project at the hospital and took mala khi nok (name of herb) about 6 months to improve my immunity… and my health was improved… Now I am taking GPO vir, my CD+4 has increa sed to about 345 cells…I think in 146 the future we will have new medicine to cure AIDS… (W: 11/06/ 0 5 ). 7 . 9 . 2 Hope for living longer with family The motivation for living with HIV/AIDS a nd taking good care of themselves was to live longer with their families. Participants hoped and thought that at least, they may be alive for 15-20 years because AIDS can be controlled by taking care of themselves. I must make myself get well. I don’t think too much; if I think too much the CD4+ would be down. I th ink I can live longer, as long as possible with my family… (A: 13/02/0 5 ). I quit drinking alcohol but I eat good food, take medicine on time, observe myself and go to see a doctor every appointment because I want to be cured, and live with my family for my old age… (H: 18/02/0 5 ). 7.9.3 Hope to live to see childr e n grow up and have a future Participants hoped to live long enough to see their children grow up and be successful in their lives. They wanted their children to complete their education and get a job before they died. Because they think that the prognosis of this disease is uncertain, fulfillment of that hope depends on the care they take of themselves. Some participants explained that: If my immunity is good, I am st rong, I will live longer. If my immunity is low, I may be sick, it is uncertain; I have to take better care of myself to nurture my children until they grow up and meet success in the future… (Q: 06/ 05/ 05). I have only one son. After my husband passed away I need to take care of him the best as I can. I will prepare everything for his future if he wants. I want him to be a good person, complete 147 his education and get a job including success in his life before I die. If I die before, he can receive support from his aunt. But I think I can live with him for l ong time because I am healthy… (X: 14/06/05). 7 . 9 . 4 Hope for a job After being diagnosed with HIV/AIDS, most of the participants lacked a job due to their illness. When they recovered from th eir illness, they needed a job that did not affect their health. They did not want to be a burden on others. Many participants confronted problems in finding a job because having HIV/AIDS evoked social disgust and fear from potential employers or customers. These conditions made them suffer, feel depressed and discouraged. If I recovered from my illness I thought I could get back to work in the same place. It was good money for me; I earned money about 5,000 baht per month. I was a delivery man to send the goods and collected money. I hoped my boss would understand me. He and my friends knew I had “wan na rok pord” (TB lung) before I came back to my home town… ( N : 17/05/ 0 5 ). Some participants worked as construction labourers. They stopped work or moved to other places many times although the work was not finished because other workers mocked them when they knew the particip ants had AIDS. This situation hurt their feelings. They needed others to give them a chance to work in society and to give them sympathy as human beings. One particip ant moved to work in another province. My friends didn’t understand me I had AIDS because my husband infected me. It was not my wrong. I worked day to day for my family living, but I had to stop working and sought a new job. I didn’t do other jobs except construction work…I had AIDS they feared contracting AIDS fr om me…I was shamed… I had to go…because they hurt me… (I: 20/07/05 ). 148 Some participants needed to work at every job that gave them a chance to earn money for their own living expenses and those of their family such as being a cleaner, labourer, driver, doing housework, being a dressmaker or waitress. I thought I could get a job as before. I was a dressmaker in a private company. I earned 4,000-5,0 0 0 baht per month. When I had AIDS I stopped work because of fatigue, cough, headache and lost weight. I now feel be tter and have gained weight 6 kilograms. I will go back to work, but I don’t know which work I can get … I can work many j obs a woman can do…but I don’t want to work far from my homet own; I hope I ca n get a job…(M: 17/03/ 0 5 ). I hope to recover as soon as possible, I hope to be healthy; I hope to get a job. I don’t want to depend on others; I need to stand on my own two feet like be fore. Now I receive money about 1,000 baht a month from my boss; sh e pities me… (M: 5/04/0 5 ). Hope is one of the forces that motivated th e participants to keep trying to reach their goals. Goals are key to purposiv e behaviour and effective management of their lives. Building hope has been described as part of psychosocial care of people with HIV/AIDS (Choksawadphinyo, 2005). 7.10 CONCLUSION “Feeling empowered” enabled participants to move forward and to feel in control of their lives. Empowerment can help people to develop a critical thinking awareness of their situation and enable them to control their environment to achieve their goal and to live a normal life in society. In th e context of this study, feeling empowered enabled participants to prioritise their own self-care. They realised their self- responsibility and their rights to protect themselves from deteriorating health and early death from HIV/AIDS. Personal and social acceptance and hope for the future underpinned that feeling of empowerment. In the next chapter the core variable or 149 150 basic social psychological process “from experiencing social disgust to passing as normal” is illustrated. CHAPTER EIGHT FROM EXPERIENCING SOCIAL DISGUST TO PASSING AS NORMAL 8.1 INTRODUCTION The purpose in this chapter is to present a detailed description of the theoretical findings about the experiences of Thai people living with HIV/AIDS that are encapsulated within the basic social psychological process “From experiencing social disgust to passing as normal”. The relationship of the findings of this study to those of other comparable studies is discussed, followed by the implications, recommendations and limitations of this study. 8.2 STUDY OVERVIEW The broad questions that framed the study were: 1) What are the experiences of Thai pe ople suffering from AIDS, in managing and living with AIDS in the context of their environment in daily life? 2) What are the self-care processes of Thai people suffering from AIDS living in their own homes? The key questions used to elaborate information about their self-care processes were: tell me about how you manage your disease, and how you take care of yourself in your daily life? In order to understand how Thai people liv ing with HIV/AIDS take care of their health and manage their lives in the context of stigma and discrimination, I used grounded theory methods to generate a substantive theory that describes their experiences in their world. As Glaser (1978, p. 93) states “the goa l of grounded theory is to generate a theory that accounts for a pattern of behaviour which is relevant and problematic for those involved”. In this research study I have inductively developed a substantive theory which reflects the views of people living with HIV/AIDS and accounts for the patterns of behaviour that occur following diagnosis with HIV/AIDS. The substantive theory includes the codes, concepts, core categories, theoretical 151 propositions and the basic social psychological process as summarised in Table 8.1. Arising out of this is a process-oriented model (Figure 8-1) around the basic social psychological process “from experiencing so cial disgust to passing as normal”. It provides a framework to understand how Thai people living with HIV/AIDS take care of their health and manage their lives in the context of stigma and discrimination. The preceding four data chapters (Chapters 4-7) detailed the core categories that contribute to the basic social psychological process. In Chapter Four I presented the first core category “being HIV/AIDS” ela borating on the theoretical proposition that “discovering the meaning of having HIV/AIDS” comprises four concepts: being diagnosed with HIV/AIDS, being stigmatised, suffering, and learning about HIV/AIDS. In Chapter Five I presented the second core category “making choices” developing the theoretical proposition that “to live a ‘normal’ life” involves three concepts: avoiding unhappy situ ations, getting remarried, and seeking support. Next in Chapter Six, I presented the third co re category “keeping well” developing the theoretical proposition that “to maintain emotional and physical health”, includes eight concepts: religious practices, keepi ng a cheerful mind, self-treatment, taking care of the body, keeping the environment cl ean to prevent getting germs, healthy behaviours, getting healthcar e services, and attention to, and concern about, medication. In Chapter Seven I presen ted the fourth core category “feeling empowered” elaborating on the theoretical proposition that “personal and social acceptance of illness” includes eight concepts: being encouraged, acknowledging the disease, social acceptance, tamjai, feeli ng proud of self, feeling good about life, feeling lucky, and having hope. The basic social psychological process “from experiencing social disgust to passing as normal”, discussed in this chapter, is the co re variable that draws together the stages of the process reflected in the core categories and illuminates the strategies used by participants to resolve the ever present risk of stigma and discrimination and to “pass” as normal. 152 Table 8.1: The codes, concepts, core categories and theoretical propositions leading to the basic social psychological process Codes Concepts Core Categories Theoretical Proposition BSPP > Experiencing symptoms >Incurable >Expect to die soon >Communicable >Getting visible signs >Samson >Social disgust >Fear and shame >Loss of finance >Family >Media >Health professionals >Won’t be around people, >Stay at home with family >Talk to those who accept and come to talk >Selective disclosure >Family >Neighbours >Friends and PLWHA network groups >Health professionals >Government and non-government offices >Need a friend > Need a complete family >Need a child >Making merit >Temple activity >Practising meditation >Reading Dhamma >Praying in front of Buddha image >Enjoying recreation >Living in a good environment > Buying medicines from grocery store to relieve symptoms >Using herbal medicines >Eating healthy food >Avoiding taboo food >Keeping the body fit >Sleeping well >Personal hygiene > Washing clothes >Washing dishes >Drying in the sunshine > Stopping the addiction >Using condoms >Preventing accidents and injury to self >Consulting health prof essionals and visiting clinic >Following guidance > Concern re the timing of medications >Concern re the dosage of medications >Concern re the side effects of medications >Self >Family >Neighbours >Friends and PLWHA network groups >Health professionals >Illness is chronic >Symptoms management >Family >Neighbours >Friends and PLWH A network groups >Health professionals >Plong >Karma >Let it go >Having a role in society >Self valuable >Maintaining work routine >Love, caring and concern >Close with family >Being healthy >Have a chance to receive healthcare service >Have a chance to get ya taan virus >Have a chance to get a job >Hope for new treatment and cure >Hope for living longer with family > Hope to live to see children grow up and future > Hope for job. 1)Being diagnosed with HIV/AIDS 2)Being stigmatised 3)Suffering 4)Learning about HIV/AIDS 1)Avoiding unhappy situations 2)Seeking support 3)Getting remarried 1)Religious practices 2)Keeping a cheerful mind 3)Self-treatment 4)Taking care of the body 5)Keeping the environment clean to prevent getting germs 6)Healthy behaviours 7)Getting healthcare services 8)Attention to, and concern about, medication 1) Being encouraged 2)Acknowledging the disease 3)Social acceptance 4)Tamjai 5)Feeling proud of self 6)Felling good about life 7)Feeling lucky 8) Having hope 1) Being HIV/AIDS 2)Making choices 3)Keeping well 4)Feeling empowered Discovering the meaning of having HIV/AIDS To live a “normal” life To maintain emotional and physical health Personal and social acceptance of illness F R O M E X P E R I E N C I N G S O C I A L D I S G U S T T O P A S S I N G A S N O R M A L 153 In order to explicate the basic social psychological process I ex plore the theoretical components of the model as illustrated in Figure 8.1, drawing on Stevens-Barnum’s (1994) theoretical commonplaces as a framew ork. The components of the theory are illustrated as follows. 8.3 THE COMPONENTS OF THE THEORY The person, act, other and environment are the functional components of any theory that are referred to as commonplaces by Stevens Barnum (1994) and Meleis (1991, 2005), and are utilised in work by Di gnam (2001) and Wilson (2004). These commonplaces provide a structure in order to evaluate a theory. Before I explain the model’s structural components and the in terrelationship of the components, the concepts of person, act, other and environment, which relate to this substantive theory are defined as follows. 8.3.1 The “person” of concern for this theory refers to the participants who live with HIV/AIDS which causes suffering in the physical, psychological, and socioeconomic dimensions of the person. 8.3.2 The “other” in this theory includes the family members, neighbours, friends and PLWHA groups and healthcare professionals who interact with people living with HIV/AIDS. The interaction may have either a direct or an indirect influence on the self-care management of people living with HIV/AIDS. 8 . 3 . 3 The “act” is self-managing and living with HIV/AIDS which is the practice of activities that participants initiate and perform on their own behalf in maintaining life, health, and well-being. Self-management is encompassed in the basic social psychological process “from experiencing so cial disgust to passing as normal” for people living with HIV/AIDS. Self-management includes strategies that are identified within the four core categories to enable participants to avoid social disgust and pass as normal within Thai society. 154 8 . 3 . 4 The “envir o n m e nt ” comprises sociocultural beliefs, including societal beliefs and responses toward those with HIV/AIDS, and the health care system that influence the self-care process of people living with HIV/AIDS. The sociocultural environment of people in Thai society is a very important influence on the ability of people living with HIV/AIDS to develop appropriate self -management strategies to achieve well- being and to live a ‘normal’ life in society. 8.4 FROM EXPERIENCING SOCIAL DISGUST TO PASSING AS NORMAL Figure 8.1 illustrates the process by which pe ople with HIV/AIDS learn to manage the problems in their life following their diagnosis with HIV/AIDS, which, as outlined in Chapter Two, occurs in a sociocultural envi ronment in which HIV/AIDS is a highly stigmatised disease. “From experiencing social disgust to passing as normal” describes the process by which participants learn to manage not only the disease but the ongoing risk of social disgust. 8 . 4 . 1 Experienc i n g socia l disgu s t In Thai, the words “sungkom rungkiat” me an social disgust (Kornsaku, 2003; Songwathana, 1998). Thus AIDS is not just a physical disease but it is also a disease that opens one to social loathing from within one’s own family as well as friends, employers, neighbours and the wider community (Namjantra et al., 2003; Phengjard et al., 2002; Rujkorakarn et al., 2000). One participan t clearly described that experience of social disgust from his family: I had AIDS, I had many symptoms such as oral fungus, black spots on the body, dark skin and I was thin. I was tired and fatigued, I just sat, slept and watc hed television a ll day. I looked much older than my age. I lived at the same house with my mum and my sister’s family but my sister and her family gave me a separate place from them…. I had wanna roke pord (Pulmonary 155 SOCIAL ENVIRONMENT Stigmatisa t i o n and Discrimin a t i o n FROM EXPERIENCING SOCIAL DISGUST TO PASSING AS NORMAL BEING HIV/ AI DS Discovering the meaning of having HIV/AI D S MAKING CHOICES To live a “normal” life K E E P I N G WELL To maintain emotional and physical health FEELING EMPOW ERED Personal and social acceptance of illness CONSEQUENCES >Living a nor mal life >Being Healt hy Figure 8-1: The Basic Social Psychologica l Process: “From Experiencing Social Disgust to Passing as Normal” 156 tuberculosis), it is as contagious as AIDS disease…. My mum and sister’s family feared to c ontract germs from me. Sometimes I regret that they take care of me because of duty, not love. They didn’t sit close to me and talked to me briefly, they did not talk too much to me because they were disgusted and hated me. I know when they came to see me they stood far away from me and asked me what I wanted to have then they walked away. They did not interact with me. Just se nt in some foods and things and walked away. I tried to tamjai, positive thinking and accept my situation. If I were without th em, I would have hardship, no one would look after me. I was afraid to die I knew AIDS can not be cured…and is disgusting… (N: 20/07/0 5 ). Chapter Four addressed the experiences of being HIV/AIDS, the initial shock, loss of hope, fear of stigmatisation, shame and suffering. The diagnosis of HIV or clinical AIDS leads to both the stigma of being contagious and the expectation of premature death (Dane, 2002). Beliefs about AIDS as a disease of social disgust were held by participants, as well as by those around them. As participants came to accept having HIV/AIDS and learnt of the possibilities for living with HIV/ AIDS as a chronic disease rather than a rapidly fatal illness, they needed to develop strategies to deal with their internalised social disgust as well as the potentially discriminatory responses of others. As Goffman (1963, p. 18) commented: “shame becomes a central possibility, arising from the in dividual’s perception of one of his attributes as being a defiling thing to possess”. The strate gies of acknowledging the disease and Tamjai , described in Chapter Seven, effectively addr essed internalised shame and suffering, as illustrated by another participant. I accept myself , I don’t think about my disease, I let it go. I enjoy doing housework, chatting with family members and friends, watching television, listening to music and shopping with friends. It makes me forget my disease and have a cheerful mind. I can control myself and live a nor mal life (Q: 06/05/ 0 5 ). 157 All participants tried to accept their disease although it was incurable. They learnt not to think about the disease and to “let it go” because if they thought too much about their disease and the shame of it, thei r health would suffer. In this study, tamjai improved the participants’ peace of mind. Th e findings of this study are consistent with those of Junda (2004) who found that tamjai provided a soothing/calming effect on the mind, increased happiness and will-power to cope, for people living with breast cancer. It is important for people living with HIV/AIDS to have hope for themselves and their families which leads them to initiate, develop, and maintain self-care to achieve their goals: having a normal life and well-being. Therefore, the participants should try to confront their situation and tend to create self-care management strategies while having HIV/AIDS by understanding and learning about their disease. Then they change their feeling into positive ways in order to manage their stigma and discrimination in their social environment around them and move to seek the way to live a “normal” life (illustrated in Figure 8-1 with an arrow) through making choices, keeping we ll and feeling empowered in order to achieve their goal. 8 . 4 . 2 Living a norma l life As outlined in Chapter Five, participants made choices in order to live a “normal” life, learning how to maintain their health and manage their life situation to live as satisfying a life as possible with HIV/AIDS. Consistent with living in a collective society, managing and rebuildi ng relationships with others was a key element in the choices made by participants. Such relationships provided emo tional and financial support, and a reason for living that both motivated and enabled participants to focus on getting well and keeping well. For most participants living a normal life meant living with extended family and contributing to family life and family income. I am now having a normal life. I am very happy because everything is normal and good for me . I can stay alive and live with my family (husband, my parents, my brother and my 158 daughters) in my old age and I can do everything other people can. I have no symptoms on my body I look healthy… (E: 27/02/ 0 5 ). Participants asserted that they did not need to be treated by family members and the community as HIV/AIDS patients. They wa nted to join the family activities and community as normal people. They wanted to help with the housework or other work- related activities such as going to the farm to feed animals, and to enjoy themselves. They could help themselves and wanted to live normal lives as normal people can. E very day I live a normal life. I learn about my disease from my experience. I accept myself; I don’t think about my disease, I have a normal life, I help myself, not trouble other people. I can do everything like normal people can…and can help my family earn money for living… (Q: 20/05/ 0 5 ). As outlined in Chapter Five, “normal life” for some participants included getting remarried and having a baby to continue the family line (section 5.4). Consistent with the findings of Klunkin and Greenwood (2005a), participants in this study remarried because they want to be a complete family and a “normal” family, the same as other families living in Thai society. Nanjantra (2003), in a grounded theory study of the coping process of people with long-term HI V infection, describe d that process as fighting to live normally with HIV infection. The experience of living with HIV/AIDS unfolds in the context of stigma and discrimination. Thus, participants who wanted to have a normal life had to develop strategies either to pass as normal or to avoid contact with those who may pass judgement on them. 8 . 4 . 3 Avoidin g poten t i a l discr im i n a t i o n Participants kept themselves from potent ially harmful situations and discrimination, by “avoiding unhappy situations” with peop le who looked down on them and made them feel uncomfortable. Thus, participants saved themselves from upset by limiting 159 their activities in their villages. Avoiding being around people in public was a way of controlling fear of rejection. This choice by some participants, to withdraw almost entirely from village life to protect themselves from hurtful rejection, is consistent with the findings of Klunklin (2001) and Ichikawa and Natpratan (2006). However, avoiding social interaction in this manner is not consistent with “living a normal life”. 8 . 4 . 4 Passing as norma l Passing is defined by Goffman (1963, p. 58) as “the management of undisclosed discrediting information about self”. In the context of this study, “Passing” means that people living with HIV/AIDS try to ensure th at they have no visible signs so that their disease is not noticeable to others; “the go al of passing is to become part of the ‘normal’ group” (Joachim & Acorn, 2000). Pass ing as normal is an attempt to protect their families and themselves (Dane, 2002) a nd enables them to go on with their lives with a lower level of distress. Participants who successfully pass may become part of the normal group and can live in society, as two participants explained: If I have no symptoms I think I am not an AIDS patient because my body is as clean as normal people (keeps smiling) but if I have symptoms on my body I am afra id that I will die. I fear people would avoid me and would not understand me, it would hurt me…and I would feel shame… (G: 04/03/05). I am not sick; I have no sympto ms, although I am an infected person… I feel normal and happy with life as other people… (U: 17/05/ 0 5 ). As previously stated, villagers often discussed with each other if they noticed their neighbours had any signs of HIV infection, such as dry or da rk skin, a rash or blister on any part of the body, or being thin. Then they would avoid relating to those who had the look of an HIV infection (Rujkor akarn et al., 2000). Participants who had HIV/AIDS applied the same lens as “normal” people to identify others with the disease; as another participant stated: 160 I just look outside at the physi cal, I do not know who has AIDS … because they had nothing wrong happen to them, and they have no visible signs such as dark skin, rash or maculae on their body. If they don’t tell me …they’ve got AIDS, I won’t believe they have it… (F: 17/02/0 5 ). Attempting to conceal the illness is one way that people living with chronic conditions that are stigmatised and discredited by other people in society can avoid discrimination (Joachim & Acorn, 2000). In this study participants had many strategies for “passing” by concealing thei r HIV/AIDS status or symptoms from others, or by controlling information as to their status th rough selective disclosure. 8 . 4 . 5 Strateg i e s to pass as norma l Keeping well, as detailed in Chapter Six, was the primary strategy to “pass as normal” by avoiding having visible signs of the disease. As previously stated, all participants had to actively manage their conditions to sustain their health and recover from their illness. Keeping well resulted in many part icipants feeling and looking comparatively healthy, being able to work around the home or in positions that contributed to family income and being able to partake in activities that enabled them to define themselves as living a “normal” life. Any visible signs such as dark spots on arms were covered with a long-sleeved garment. Living with HIV/AIDS in this manner enabled the participants to feel empowered. Participants sought information about the disease and treatment from many sources, in order to prevent or treat opportunistic infections that left them overtly sick. Eating healthy food, avoiding taboo food, exerci sing, sleeping well, keeping personal hygiene, avoiding risky behaviours, taki ng medication regularly, and enjoying recreation were intentional actions of participants to restore their health and well- being. The findings are consistent with those of Corless et al. (2002 ) who reported that taking supplements, vitamins and nutrition, sleeping, doing exercise, taking rest and adjusting activities were used as self-car e strategies in relieving fatigue in people living with HIV/AIDS. Looking and feeling healthy enabled partic ipants to pass as normal. 161 The other strategy used to “pass as normal” was that of selective disclosure (detailed in section 5.2.4). Disclosure is an important issue among people living with HIV/AIDS. Keeping their HIV/AIDS status secret made some participants feel safe in their life. In contrast, self-disclosure enab led participants to seek social support and new information about–and treatment for–the disease. This dilemma is also reported by Greeff et al. (2008) in the context of Af rica. The concept of disclosure is often categorised as disclosed or not disclosed (Greeff et al., 2008), however the notion of selective disclosure has more fit with the goal of passing as normal. In Thailand, as in Africa (Greeff et al., 2008), participants re ported that disclosure is highly complex and risky because of the high degree of s tigmatisation and discrimination by society, but they selectively disclosed to others because they needed support to maintain their lives. Acceptance and social support were critical to participants to enable them to have hope and to maintain their health. Most participants sought support because when they were initially diagnosed with HIV/AIDS, they had both serious illnesses and were unable to work, resulting in loss of money to support themselves and emotional distress (section 5.3). Support included mone y, food, work, advi ce and medicines, good communication and good relationships. Ciambrone (2002) stated that social support is particularly important for people living with HIV/AIDS. For example, support can assist participants to find meaning in their life and gain a sense of control. Disclosure was actively managed by the particip ants in this study; that is, participants maintained control over the decision to disclose, with disclosure ranging from full to selective (Greeff et al., 2008). Often, selective disclosure was used to obtain acceptance and support, while concealment was pr actised in order to be able to work. Working in a village distant from the part icipant’s home village was an example of the latter. Keeping well and selective disclosure we re effective strategies that enabled participants to move forward and to feel in control of their lives: that is, to feel empowered as detailed in Chapter Seven. Em powerment can help people to develop a critical thinking awareness of their situation and enable them to control their 162 environment to achieve their goals and to live a normal life in society. In the context of the study, feeling empowered enabled partic ipants to prioritise their own self-care. Personal and social acceptance and hope for the future underpinned that feeling of empowerment. Hope was a powerful incentive for participan ts to maintain their lives. Moreover, having hope lifted participants’ spirits and helped them manage their disease and promote their well-being; a finding consis tent with that of McCormick, Holder, Wetsel and Cawthon (2001). The result of hope is the energy to work for the future (Holt & Reeves, 2001). Hope is influenced by the sociocultural environment and is dependent on managing the risk of stigma a nd discrimination within that environment. 8 . 4 . 5 Conseque n c e s of passi n g as norma l The consequences of passing as normal, for th e participants in this study, were that they were able to live comparatively normal lives and to maintain their health like other people with a socially invisible chronic disease (L onardi, 2007). Participants accepted themselves and went on with life as normal people in their local social environment context. Where participants had fully disclosed their illness they may have contributed to increasing the “soc ial and moral space” (Viddhanaphuti, 1999, p.10) for people with HIV/AIDS in their local community. However, the focus of the majority of participants was on selective self-disclosure fo r social support, and finding new meaning in life (Viddhanaphuti, 1999). The basic social psychological process “from experiencing social disgust to passing as normal” represents a dynamic process that Th ai people living with HIV/AIDS used to manage their lives by using knowledge, skill and resources from their own perspectives in their natural circumstances. 8.5 IMPLICATIONS OF THE STUDY This qualitative research using grounded th eory generated a mid-range theory that focuses on a specific phenomenon, “the self-care processes among Thai people suffering from AIDS”. The theory described how Thai people manage their self-care 163 and living with their disease in their natural context. The theory reflects the views of people living with HIV/AIDS and accounts for the patterns of behaviour that occur following diagnosis with HIV/AIDS. The findi ngs from this study will help healthcare professionals understand how Thai people living with HIV/AIDS learn about their disease and manage their HIV/AIDS within their natural circumstances. It is argued that, in the context of Northeastern Tha iland, the basic social psychological process “from experiencing social disgust to passing as normal” underpins successful management of HIV/AIDS and enables and motivates people living with the disease to undertake effective self-care in order to remain symptom free. The substantive theory developed in this study provides a differing perspective for healthcare providers and the potential to both develop more effective interventions for people living with HIV/AIDS and to better su pport the families in continuing to care for people living with HIV/AIDS at hom e. The findings from this study have implications for nursing practice and nursing theory and for nursing education. Recommendations are made for future research and for HIV/AIDS health policy in Thailand. 8 . 5 . 1 Implica t i o n s for nursi n g pract i c e and nursin g theor y The basic social psychological process “from experiencing social disgust to passing as normal” is useful in understanding self -care processes of people living with HIV/AIDS from their own perspectives. This substantive theory can be used to guide practice and to provide a framework for se lf-care assessment activities. Table 8.2 outlines a series of questions based on th e fundamental aspects of the self-care experiences of people living with HIV/AIDS . These questions might help healthcare providers to develop appropriate healthcare services, which encourage people living with HIV/AIDS to initiate, maintain and de velop suitable self-care activities that can help them to reach well-being and to have a normal life in their society. The findings can be used for developing the nursing practice programme to provide care for people living with HIV/AIDS at all levels of the healthcare service such as a University Hospital, Provincial Hospital, Community Hospital, Health centre and in the family and community. In order to provi de the best care for people living with 164 HIV/AIDS, nurses and other heal thcare providers should assess the strategies that are being used by people living with HIV/AIDS, to manage the risks of stigma and discrimination. Health professionals need to provide and promote social acceptance and hope so that people can live a normal life with HIV/AIDS, as well as providing information about the disease and effective self-care. Table 8.2: Questions About Self-Care Management Question Category Concept Theoretical proposition Could you please tell me about your disease? Being HIV/AIDS Being diagnosed with HIV/AIDS Discovering the meaning of having HIV/AIDS How do you think and feel about AIDS disease? Being HIV/AIDS Being stigmatized Suffering Learning about HIV/AIDS Discovering the meaning of having HIV/AIDS How do you view your disease? Moving from social disgust to passing as normal BSPP Environmental context How do you manage your disease in your daily life? Keeping well Religious practices Keeping a cheerful mind Keeping the environment clean to prevent getting germs To maintain emotional and physical health How do you take care of yourself? Keeping well Taking care of the body Healthy behaviour To maintain emotional and physical health When you get sick what do you do? Keeping well Self-treatment Getting healthcare services To maintain emotional and physical health How do you manage your medicine? K eeping well Attention to, and concern about, medication To maintain emotional and physical health Does anything make you feel better when living with HIV/AIDS? Making choices Avoiding unhappy situations Seeking support Getting remarried To live a ‘normal’ life Who helps you with your disease? Feeling empowered Social acceptance Being encouraged Personal and social acceptance of illness Is there anything else you would like to tell me about your experience of living with HIV/AIDS? Feeling empowered Feeling proud of self Having hope Feeling good about life Feeling lucky Personal and social acceptance of illness How do you manage your thoughts and feelings about living with HIV/AIDS? Feeling empowered Acknowledging the disease Tamjai Personal and social acceptance of illness 165 Professional nurses are interested in developing nursing theory that can guide nursing practice. Findings in this study, as descri bed in Chapters Four to Seven, support concepts within various models used in nursing, including Orem’s self-care model, the Health belief model and the health-seeki ng model. However, it can be argued that these models differ in their theoretical underpinnings, pur poses and usefulness. Thus, integrative models and methods are needed to further develop nursing theories about the self-care phenomenon that can be used to guide Thai health professionals. Nursing theory that is too broad, even though va luable to guide overall intervention, is sometimes not practical for a specific condition or situation. In addition, a practical model for specific nursing interventions is needed when applying nursing theory to particular situations and contexts. In Thailand, health professionals, especially community nurses, play a key role in the de livery of primary care. This role includes facilitating and providing health education to the individual, fam ily and community to improve their knowledge about self-car e processes among Thai people with HIV/AIDS living at home in their natural c ontext. So the results of the study provide empirical evidence to build scientific underpinning for home care nursing practice in Thailand and to help nursing administrators and policymakers understand the nature of home care provision and outcomes for care that are influenced by people living with HIV/AIDS. 8 . 5 . 2 Implica t i o n s for nursi n g educa t i o n “ From experiencing social disgust to passi ng as normal” also provides a practical framework for curriculum development and delivery of healthcare services, which influence the development of self-care among people living with HIV/AIDS. It is important to prepare healthcare providers to understand what enables and motivates people living with chronic life-threatening conditions such as HIV/AIDS to initiate, develop and maintain self-care behaviours. The results of this study have implications for Thai nursing education in two aspects including the teaching of both nursing perspective and nursing care for people living with HIV/AIDS in order to fu rther improve health outcomes. 166 8.5.2.1 A self-care process perspective of people living with HIV/AIDS should be introduc e d to students by nurse educator s . At present, education for nursi ng professionals in Thailand tends be directive, with the instructors providing the information to students who are playing a passive role rather than one in which they are integrally involved and share their views. It is important for community health professionals, partic ularly the community nurse educators who work in the family and community, to involve family members and community members to support and promote self-care in people living with HIV/AIDS because the family or home is the central point of concern. Community nurse educators must be able to model this involvement with students, both in the classroom and in their practice as a community instructor caring for people living with HIV/AIDS in their family. In this way, the community nurse educators could support and help shape the views and the values of nursing students about self-care nursing practice. 8 . 5 . 2 . 2 A culturall y sensitiv e approach to nu rsing care of people living with HIV/AIDS is necessary The outcomes of this study demonstrated that the processes of self-care associated with the beliefs and culture of Thai people in relation to health and illness should be addressed and emphasised in a nursing curriculum. Community nurse educators should prepare nursing students to think about the way Thai beliefs and culture impact healthcare situations in Thai people living with HIV/AIDS in contrast to Western literature. 8.6 RECOMMENDATIONS FOR NURSING RESEARCH Grounded theory was used to discover the se lf-care process of Th ai people suffering from AIDS. The findings in this study not only enhance knowledge and understanding about self-care experiences of Thai people suffering from AIDS in the context of Northeastern Thailand, but also the concept of self-care in nursing research in Thailand. The following recommendations for further research in nursing are derived from this study. 167 1) Based on the findings of this study, further study on life experiences relevant to the self-care of people with HIV/ AIDS in different contexts such as orphans, youth, and pregnant women and drug addicts, those who live in prisons, and t hose who live in the temples should be explored in order to furt her develop formal theories about self-care processes of Thai people living with HIV/AIDS. 2) Based on the findings of this study, further re search using quantitative methodology could be applied to measure concepts such as social support, health seeking, healthy behaviours, and others con cepts in order to understand the factors that relate to self-care processes of Thai people living with HIV/AIDS. 3) The study should be replicated in people with other chronic illnesses, such as hypertension, heart disease, arthritis, chronic lung diseases, stroke, and other conditions in order to develop a substantive theory about the self-care process of Thai people living with chronic diseases that are not stigmatised. 4) Participatory action research could be conducted with key stakeholders such as monks, teachers, community leaders, vi llage health volunteers, and health professionals in order to promote greater involvement of people living with HIV/AIDS in community life. 5) A prospective study could be undertaken to evaluate the symptoms and medication side effects that influence adherence to highly active antiretroviral therapy in people with AIDS in each regimen. However, the grounded theory approach was very useful in this study. It helped me to understand the research problem and also discover possible interventions that can be used to address the problem in the Thai Isaan context. 168 8.7 RECOMMENDATIONS FOR HIV/AIDS HEALTH POLICY IN THAILAND Although Thailand has achieved significant success in controlling the spread of HIV/AIDS, with new infections droppi ng from 130,000 in the early 1990s to 17,000 cases a year in 2005 (MOPH, 2007a; MOPH & WHO, 2005), there are signs that the HIV epidemic is threatening to rebound (Poolcharoen, 2005). The National Plan for the Prevention and alleviation of HIV/ AIDS in Thailand 2007-201 1 continues the work of the previous National Plan (2002-2 0 0 6 ) , however concepts and policy orientations have been modified to account not only for the rapidly changing HIV/AIDS situation but also for globally induced changes in the domestic economy, society and culture (Poolcharoe n, 2005). The current National Plan is to be used as a tool for the national response to the current and future HIV/AIDS situation and its impact on the health, sociocultural and econo mic aspects of the life of the people living with HIV/AIDS in Thailand and ne ighbouring countries. The project has the following specific objectives; 1) To develop a strategic plan for all relevant sectors through a participatory approach. 2) To use the plan as a tool to ensure that policy and programme components are transformed into appropriate actions for each organisation and related national mechanism. 3) To integrate the next pl an on HIV/AIDS prevention and alleviation in response to the needs from provincial strategic planning clusters facilitated by the provincial committee on HIV/AIDS prev ention and alleviation. At present, Thai people are increasingly we ll educated and share an improved level of collective well-being, but the incidence of illness and death from behavioural diseases remains a health problem (MOPH, 2006a). Stigma and discrimination are the major barriers to effective HIV/AIDS treatment and prevention; and are manifested in 169 blame, loss of self-value and shame. Thus , the findings of this study could influence health policy in Thailand as follows. 1) National healthcare policy should have a specific section that focuses on health promotion and illness prevention in relation to HIV/AIDS. Information about HIV/AIDS should be available in every community and at every level of healthcare. Additionally, healthcare professionals at healthcare centres should be well trained to assist people with HIV/AIDS to resolv e their restricted condition, providing new perspectives, and supplying information a bout all available alternatives. Some healthcare providers still hold negative attitudes toward people living with HIV/AIDS and their families (Wattradul, 2002). Thus, health policy should support continued training of health professionals in every level of the healthcare system to change their attitudes toward people living with HIV/AIDS. 2) Intersectoral collaboration among Governme nt and Non-Government Organisations, and other private sector and community organisations should be included in national policies related to eradicating AIDS-associated stigma and discrimination, and promotion of care for people living with HIV/AIDS. 3) This study was focused on the experien ces of people with HIV/AIDS who had low economic status and low education levels. The Government should continue assisting people with HIV/AIDS in terms of educa tion, job training, and occupation. Access to government funds would assist people living with AIDS to improve their socio- economic status particularly for daily living. 4) The government should continue employi ng people with HIV/AIDS in government organisations and units especially in hospitals. Such employment would help people with HIV/AIDS to realise the value of th eir lives. It would also make them role models for persons newly diagnosed with HIV/AIDS, giving them hope for a better life. 5) The government should support formal educ ation as well as vocational training. People with HIV/AIDS need access not only to vocational training like repairing 170 electronic instruments or making flowers. Those with intellectual capacity and who are still young should be supported to continue their studies such as computer training. 8.8 LIMITATIONS OF THE STUDY The limitations of this study are related to the characteristics of the participants, methodological procedures and the researcher’s skill. In qualitative research, the researcher is the instrument. The quality of the data gathered and the subsequent conceptualisations that emerged during data analysis are limited by the researcher’s skills. Data gathering and initial data analysis for the study were conducted in Thai, but the study findings are presented in English as my second language. There were difficulties in translation to generate accurate meanings between different languages regardless of my attempt to ensure a reliable translation by using several approaches. Data generated from this study were gathered from thirty participants, who lived in the rural Isaan community in Thailand where common beliefs, and common social and cultural context influenced the strategies these persons used to manage their own health and their life experiences following diagnosis with HIV/AIDS. The intent of grounded theory study is to obtain an in-depth understanding of a phenomenon and not to generalise beyond the context of the study. Thus, further studies will be needed to assess whether or not the findings of this study hold in different sociocultural contexts. I argue that despite these limitations, understanding the process by which people who have been diagnosed with HIV/AIDS move “from experiencing social disgust to passing as normal” which has emerged from th is study is useful for people living with HIV/AIDS to manage their health, illness an d other conditions and living in their own homes in the Isaan context. 171 172 8.9 CONCLUSION As a result of this research study a substantive theory has been inductively developed which reflects the views of people living with HIV/AIDS in Northeastern Thailand and accounts for the patterns of behaviour that occur following diagnosis with HIV/AIDS. The study was conducted to gain a better understanding of how Thai people living with HIV/AIDS, take care of their health and manage their lives in the context of stigma and discrimination. A theoretical model, grounded in the perceptions and action/interaction strategies of thirty participants was developed that illustrates the basic social psychological process “from experiencing social disgust to passing as normal”. While other studies (for example, Nanjantra, 2003) have identified living normally as the goal for people living with HI V/AIDS, this study has illuminated the strategies used by participants to resolve the ever-present risk of stigma and discrimination and to “pass” as normal. Implications for practice, and further resear ch were derived from the findings of this study. 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