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
AIDS is a chronic disease that seriously affects health, emotions, social relations and household economy. People living with HIV/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 researcher explored ways people with HIV/AIDS take care of their health and manage their lives in the context of stigma and discrimination. A grounded theory study was conducted with 30 participants with HIV/AIDS, in Mahasarakham Province, Thailand. Participants were recruited from an HIV/AIDS day care clinic and by snowball sampling. 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”- discovering the meaning of having HIV/AIDS, comprises four concepts: being diagnosed with HIV/AIDS, being stigmatised, suffering, and learning about HIV/AIDS. The category “making choices”- to live a normal life, involves three concepts: avoiding unhappy situations, getting remarried and seeking support. The category “keeping well”- maintaining emotional and physical health, includes eight 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. The last category “feeling empowered”- personal and social acceptance of illness, includes eight concepts: being encouraged, acknowledging the disease, social acceptance, tamjai, feeling proud of self, feeling good about life, feeling lucky and having hope.
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 stigma and discrimination.
The findings of this study are useful in that they will provide Thai health professionals with a clearer conceptualisation of self-care among 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 nursing education, research and practice.