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. NEGOTIATING INFERTILITY TREATMENT DECISIONS A THESIS PRESENTED IN PARTIAL FULFILMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF SOCIAL WORK MASSEY UNIVERSITY PALMERSTON NORTH, NEW ZEALAND ANNA THORPE 2004 Errata Page ii 1 14 17 18 43 70 84 137 140 143 Line 19 12 18 11 8 13 3 11 16 13 3 Correction ' for' instead of 'fro ' 'fertilisation' instead of 'fertililisation' delete 'a' add ' an' before ' unexpected ' add ' : ' after '2001b' ' compromised ' instead of 'comprised ' apostrophe after 's' in participants not before 'and' not 'is' add apostrophe after 'counsellors' delete 'on' add apostrophe after 'participants' ACKNOWLEDGEMENTS This thesis would not have been possible without the time, support, insight and reflection of many people. Firstly, to those fifty two people who told the intimate stories of their journeys negotiating the infertility treatment treadmill - the telling of which involved risk, trust, tears, laughter as they thought and spoke about an area many would feel more comfortable putting behind them. Thank you from the heart. Professionally, to The Fertility Centre (formerly the IVF Unit of Health link South), who employed me as a counsellor, helping to consolidate this path, and provided access to respondents in the main study, along with the Donor Insemination Unit of Otago University. To Peter Benny, Iris Sin and Cynthia Spittal and to the Christchurch Medical Librarians. To the New Zealand Fertility Society (now fertilityNZ) for their 1992-3 Summer Studentship, and to John Peek. To the Christchurch Fertility Society for promoting the preliminary study. To Celia Briar, my chief supervisor, for her unending patience, her light guiding touch and her clear analysis. To my other supervisors, Mary Nash, Mervyl McPherson and Ruth Anderson for their helpful feedback. To the Massey University administration fro their flexibility and to the Massey Distance Librarians. To the Ethics Committees of Massey University and the Southern Regional Health Authority for their approval and useful input. To my dear partner John whose love, encouragement and academic understanding were practical, motivating and firm. For his warm hand through the hard times of losing our son after years of infertility, in the midst of this study. To our miracle boys, Fergus and Alec, for arriving in such an intense rush, teaching me that life is to be lived fully in the present. And to my family, friends and colleagues for standing alongside supportively. Thank you all. 11 TABLE OF CONTENTS Acknowledgements List of Tables ABSTRACT INTRODUCTION The power of the spoken word The story of the study Locating myself The structure of the thesis CHAPTER 1 Context and Perspectives What is infertility? Prevalence of infertility Types of infertility Types of t reatment Donor insemination: bringing in a third party In vitro fertilisation : a complex process Adoption Why is infertility a problem? Identity as infertile The stigma of infertility Infertility: that thief of control A life in crisis The focus of stress and coping Gender differences Decision-making: the labour of choice Why do people persist? Anticipated decision regret Conclusion ii vii 1 2 2 3 6 8 12 12 15 17 18 18 20 22 24 25 26 28 29 30 32 34 35 38 40 Ill CHAPTER 2 Methods and Introductions The personal is political: researcher as participant Deciding on method Interviewing couples The longitudinal dimension. Interview location Preliminary study Main study: recruitment Main study: design Main study: data organisation Ethical considerations Introducing the participants in the preliminary study Introducing the participants in the main study Ethnicity Age Employment Cause of infertility Length of infertility Amount and type of treatment Cost of treatment Family composition Pregnancy loss Conclusion CHAPTER 3 Stages and Statuses Model of treatment status 'Active' status 'Active' profiles 'Non-active' status 'Non-active' profiles 'In limbo' status 'In limbo' profiles 'Stopped' status 41 41 43 44 45 46 47 48 50 52 53 57 58 61 61 61 62 63 63 65 65 67 68 70 70 71 72 74 76 77 79 81 IV 'Stopped' profiles Conclusion CHAPTER 4 Influences and Processes Starting treatment Gender motivation for treatment Initial treatment limits The influence of values and religion Continuing treatment Factors limiting treatment The changing nature of treatment limits Treatment perseverance Stopping treatment Gender influence in stopping treatment Reasons for stopping treatment How infertility decisions were made Conclusion CHAPTER 5 The Role of Counselling Counselling roles Decision-making counselling Contact with counsellors Counsellor role Experiences of decision-making counselling Mandatory of optional counselling The timing of counselling The shock of diagnosis Coping with treatment failure Moving on from the hope of treatment Self-disclosure by the counsellor Conclusion 84 87 88 88 89 92 94 97 98 101 104 106 107 108 111 116 117 117 120 121 123 124 127 128 129 131 133 137 139 v CHAPTER 6 Conclusions and Implications Choice in assisted reproduction Key findings and their implications Questions and directions for professionals Questions and directions for research APPENDICES 1: Glossary of medical terms and acronyms 2: Letter inviting participation in preliminary study 3: Preliminary study consent form 4: Preliminary study questionnaire 5: Letter inviting participation in main study 6: Main study information sheet 7: Main study reply form 8: Main study consent form 9: Questionnaire one 10: Questionnaire two 11: Questionnaire three 12: Follow-up letter to participants 13: Summary of results to participants 14: Fertility and infertility statistics 15: Infertility treatments, DI and !VF 16: Adoption 17: Access to infertility treatment in New Zealand 18: Legal and ethical aspects 19: 'Childfree' and infertility BIBLIOGRAPHY 140 · 140 142 146 150 155 155 164 165 166 169 170 171 172 173 181 189 190 191 197 200 206 207 209 211 214 Vl LIST OF TABLES Table 2.1 DI respondent characteristics 59 Table 2.2 IVF respondent characteristics 60 Table 4.1 Gender motivation for treatment by DI or IVF 91 Table 4.2 Gender motivation for treatment by parent status 92 Table 4.3 Limits at diagnosis 93 Table 4.4 Continuing treatment by gender and parent status 97 Table 4.5 Factors limiting treatment 98 Table 4.6 Stopping treatment by gender and parent status 107 Vll ABSTRACT The focus of this thesis is on how couples make infertility treatment decisions, from infertility diagnosis through the maze of available options, until they decide to stop treatment and move on, either with or without children. The decisions required along the infertil ity treatment path are dazzling in their breadth, detailed in their technicality, physical ly daunting, emotionally demanding and ethically stretching. The research was qualitative and involved two studies. The preliminary study involved six couples who were understood to have 'moved on' from infertility treatment, although it emerged that most had not clearly stopped. The main study involved twenty couples who had undergone a minimum number of either donor insemination (DI ) or in vitro fertililisation (!VF) cycles in Christchurch, New Zealand. The research was longitudinal , with three interviews held over two and a half years. Th is enabled the development of an original model of treatment status, in wh ich participants were categorised as ' active ', ' non-active', ' in limbo' or 'stopped ' with their treatment. The model aids in understanding the positioning and movement of people 's infertility status over time. Limbo was re latively common, despite being under-recognised in the literature. The major factors influencing how couples make infertility treatment decisions were examined. Childless women were found to drive couple 's treatment decisions, while parents were more likely to make joint decisions. Emotional strain, age, and cost were factors that affected the decision to have more treatment, and got extended over time. The "lure of a cure" (May, 1995:236) through an advancing and increasing range of assisted reproduction techniques tended to delay the decision to move on from infertility treatment, as did 'anticipated decision regret' (Tymstra, 1989). Counselling, though va lued, was not found to have assisted many participants in their decision-making. The decision to stop treatment was therefore often prolonged and difficult, especially for those who were still chi ldless. INTRODUCTION Infertility Treatment Decisions "You step on a treadmill ... and you had to do everything in order for you to feel that you had done everything. Then there is always 'oh don't worry, we'll get you pregnant', sort-of a carrot being dangled. We wanted someone to say that too - it was our dream as wel l. I don't think I actually believed I was infertile. I thought he would say 'look it's just something minor and you will be right . I will give you a drug, a wonder drug and you will be fine' ." Clare This thesis is about how people make infertility treatment decisions - from the start when infertility is first diagnosed, throug h the maze of possible treatments, until they have completed their family through various means, or a decision is reached to stop treatment and move on to a different phase in life. The experience of infertility is olten likened to a journey - toward a child, toward resignation, toward self-knowledge (Michie & Cahn , 1997:98). This journey through the world of infertility is difficult and uncertain. It starts in the privacy of one's home and, over time, moves toward the doctor's office (Glazer & Cooper, 1988: xx), where the personal experience of infertility is put under the microscope and a diagnosis of the problem (hopefully) made. There, a range of medical treatments is offered, involving varying degrees of intervention, cost, time, stress, third party involvements and success. Multiple decisions will need to be negotiated and navigated (Greil, 1991: 78), which wi ll have enduring consequences (Diamond, Kezur, Meyers, Scharf, & Weinshel, 1999:220) . How people come negotiate these infertility decisions is the focus of this thesis. "It's the same secret as making really good decisions about anything knowledge, experience, understanding. Well, we didn't have any of that. " Dillon The power of the spoken word In valuing the power of narratives to explain and interpret life, I wanted to let the participants speak for themselves as much as possible (Sandelowski, 1991; Stiles, 1990). Therefore, direct quotations are used 2 wherever possible, to illustrate points in the text. The people who took part in the study were very open and articulate about what the infertility experience meant and many of these narratives are best lelt as intact as possible to preserve their essential meaning and the power of their message. All quotations from the study have quotation marks and the chosen name of the respondent, for anonymity, in italics. The participants of this study are the story-tellers about their lives with infertility, the choices they made and how they negotiated the treatment treadmill. This man explains ... "You're in a tunnel that you can't see any light at the end of it and you're fixed into a schedule, a month ly schedule, and you have your ups and downs and you're going through it and you're never really sure when it's going to end... You can't get away from it ... You're either working up to it and anticipating, or you're on the down side thinking ' damn, we'll need to wait another month and spend more money and the people are incompetent... You're searching for something, you're searching for a solution." Frank The story of the study When I first embarked on this study I was particularly interested in the dilemma of stopping infertility treatment without having a child. Withoct the child they hoped for, dreamed of, tried so hard for - how did people get to this point? Could they get to that point of acceptance and decisiveness? How could people exert some sort of strength and resolution, yet honour their emotional response to infertility? Who helps people through the challenging process of moving on from treatment empty-handed? Could people, who have really wanted and tried to have children, feel fulfilled and satisfied without them? Decision-making processes in this area appear to be taken for granted . The medical system provides a work-up of tests and progression of treatments to follow, but no model for ending treatment with dignity. It was wondering about these questions that I recruited participants for the preliminary study of a PhD in 1993. Eventually six couples were found by word of mouth who were understood to have stopped infertility treatment and moved on . A qualitative interview consisting of mainly open-ended 3 questions took place with each couple, producing a mountain of recorded material. During the interviews it emerged that two thirds of the participants had not in fact moved on from treatment - they were either having a long break ('non-active') and intended to return to treatment, or they were unsure ('in limbo') about whether to resume treatment or stop altogether, as was this woman. "I've got this lovely frieze, the ABC's of animals to put around a child's room. I started buying (baby) things donkey years ago. Sometimes not specifically just for me, but certainly not intentionally for someone else. A nice wee gown or a wee outfit or cute coloured bright suits .. . We bought one toy together, it's waiting in the wings, just to be ready for when we have children... It was always 'when', I guess now the doubt has crept in ... We couldn't go on in limbo forever." Charlotte This was enormously revealing on many levels. It demonstrated how prolonged, difficult and ambivalent stopping treatment could be. It also highlighted that people do not just move from being in active infertility treatment to stopping. In between these two treatment statuses of active and stopped can be an extended period of time and movement. During this phase, people can change what they do depending on opportunity and the personal space they are in. They can be non-active - wait and take a break. They can also be in limbo - unsure or not agreed in the relationship how to proceed with their infertility treatment. With this increased understanding and because of the challenge of recruiting more couples who were supposed to have stopped infertility treatment, I chose to expand the original research. The sample of the main study was changed to target people who had at least three donor insemination (DI) cycles or at least two in vitro fertilisation (!VF) cycles through Christchurch fertility clinics. The intention of targeting respondents who had undergone a moderate to higher number of treatment cycles, was to learn from their longer experience of infertility treatment. The main study was designed to be longitudinal, to take several snapshots of participants' lives and decisions, in order to track their decisions, treatment statuses and family situations. From 1994 until 1997, three interviews took place with twenty couples - ten from DI and ten from 4 IVF. A great picture unfolded of these forty peoples' lives and infertility over that time. "Being fertile, or being able to have children naturally hasn't been the norm... You see the instances of infertility popping up all around you. It's like when you buy a white car, you notice all the other white cars. It's looking for the norms, in those 'un-norms' around you and it's just amazing the instances of it." Nicholas Participant couples had experienced infertility for an average of seven years. DI couples had tried an average number of 15 DI cycles, ranging from three up to thirty cycles. Three of those DI couples then tried up to nine IVF cycles (usually with donor sperm, but also with the man's sperm using ICSI). In comparison, IVF couples had undergone between two and 11 cycles, with an average of five IVF cycles. Almost half the participants had undergone surgery for infertility. They had spent an average of $9,000 for DI couples and $11,000 for IVF on infertility tests and treatment . Two thirds of couples ended up with children through treatment, adoption or naturally. One third had none. Two families were blended - naturally conceived children together with siblings from DI or adoption. Two women had adopted out children when they were younger. Two men were infertile after treatment for cancer. Three people had children to former partners. Two men had undergone vasectomies and needed DI after unsuccessful reversals. Half the couples had experienced loss of pregnancy, up to four times. One couple separated during the study. These are the stories of people's lives . "I come from a background where my family were violent, where I was an incomplete child . I could never be tall enough, fast enough or strong enough or smart enough as a child growing up in my home environment... I could never give my parents the child they wanted, but I could possibly give my own child the father that he wanted. So it's bloody hard for me, because I am entering an adult relationship, an adult environment, where I can never be the complete father, the ideal father, the good father." Samuel The main study developed a wider range of questions about infertility treatment decision-making from the beginning of treatment until people stop and move on. These questions under study are complex, and 5 informed by both the personal meaning and social context of infertility, forming interconnected strands to enable us to see the whole picture (Hera, 1995) of how infertility treatment decisions are made. I was interested in whether conscious decisions were made to start and stop treatment, and who in the relationship took on the decision-making responsibility with infertility treatment. I wondered about what limits people had in terms of their treatment, and whether these limits got pushed back over time, if they were unsuccessful. I was curious about what stopped people having treatment in the end and the processes they used to stop. I assumed that it was much easier for parents to move on from treatment. I wondered about differences between parents and childless respondents, between men and women, and between those having DI and IVF. As an infertility counsellor, I wanted to know what input counsellors should be providing into infertility decision-making. As an infertile woman, I was interested in whether it would be helpful for a counsellor to disclose a personal experience with infertility. The issues and literature that inform the topic of infertility decision-making are vast, straddling the inter-connected fields of social work, sociology, psychology, nursing, statistics, medicine, anthropology and religious studies. Placing boundaries on what was, and what was not central, was challenging. The thesis is not about specific infertility treatments, like third party reproduction. It does not focus on the stress caused by infertility and the coping response to it. Nor does it target people who decided not to start infertility treatment - those who may call themselves 'childfree' (see Appendix 19). The thesis concentrates on those who step onto the infertility treadmill and how they make decisions among the plethora of treatment alternatives available, until they step off - either with children or without. Locating myself Why was this topic of infertility decision-making important to me? In 1993, when this research was started as a PhD in Social Work, I had been living with, and thinking about, infertility for several years. Over ten years of 6 infertility, I underwent various diagnostic tests and surgeries and had an ectopic pregnancy and traumatically lost a son, who was stillborn. I had a deep yearning for children. Infertility brought significant challenges to my sense of self and many losses and issues to contend with. However, at the same time, I felt ambivalent about having treatment for infertility and felt I could lead a satisfying life without children. My partner and I did decide to go ahead with infertility treatment and had two IVF unsuccessful cycles. We experienced being caught up in the multitude of decision-making required to determine what, when and for how long to undergo treatment. Just prior to a third IVF cycle, I spontaneously conceived. Our son was born extremely prematurely at 23 weeks, lay critically in the balance for months. Before his due date for delivery and while he was still in hospital, I rather miraculously became pregnant again. This son defied the odds and stayed put until 33 weeks, with hospitalisation and bed rest. At the end of ten intensely stressful months, we were blessed with two very small sons. The PhD study, in itially put on hold with one fragile son, was brought to a standstill with two. The almost completed research sat quietly for almost five years, before being restarted as a Master of Social Work - to honour the stories told by the participants and to bring closure and completion. Thus the study focus and process for me as researcher was an intensely personal one, congruous and challenging, as well as interrupted and concluded. As a social worker, my background was in community development, including a wide spectrum of women's health and reproduction issues, working along the continuum to promote choice and access to services. At the same time the research project was initiated, I began work as an infertility counsellor at the IVF clinic in Christchurch, later to become The Fertility Centre. In this professional counselling role (see Chapter Five), I met with all people undergoing IVF, some of whom had been on the infertility treatment path for up to 15 years. The vast majority of them had never met a counsellor before, did not know what to expect or how to use that time together. Thus, I became interested in the most helpful counselling roles for people facing infertility, to help empower people to 7 make infertility decisions in their lives, which were of great and enduring personal significance. These strands of personal, professional and researcher are clearly intertwined, integrating knowledge and understanding into who I am - as a woman, a social worker and a student. Consequently, this study is the result of a complex interplay of roles, knowledge's and skills (Sieber, 1982: 181). Without this combined awareness, energy and commitment, this project to explore decision-making along the infertility journey would never have been begun. The structure of the thesis In understanding why people make the infertility treatment decisions they do, it is important to understand what infertility is and what it means for people. Chapter One contains definitions and descri ptions of infertility. It describes the two main infertility treatments that the sample drew on - donor insemination (DI) and in vitro fertili sation (IVF), as well as adoption which was chosen by several participants. The chapter then introduces the extensive infertility literature on psychosocial issues. Why do people want children and what is meant by infertility as an unanticipated life crisis? What difference does gender make in the response to infertility? The context of decision-making in infertility treatment is discussed, along with why people persist with treatment and the motivating concept of 'anticipated decision regret'. This background detail is important, as generally participants felt that society is ignorant of the impact of infertility (Sandelowski, 1993), noted by this woman, who said that for "A lot of people, it's abhorrent to think of the things you do if you're infertile - interfering with nature and things like that.. . I find people who make those kind of comments, they're sitting secure at home with their two or three children and it's never been an issue for them. It's very different if you're in that situation." Sarah In seeking to understand how people make infertility treatment decisions, how the data was collected and analysed was essential for developing valid results. The qualitative methodology of the study is discussed in Chapter 8 Two, starting with the overlap of the personal with the research topic. Recruiting participants who firstly had moved on from treatment for the preliminary study, and secondly, those who had undergone a minimum number of recent DI or !VF cycles for the main study is considered, as well as the choice of interviewing couples. A vast mountain of data was collected from the closed and open questions, which required rigorous methods of organising and analysing the data honourably, gu ided by clear ethical principles . Following two detailed tables summarising the characteristics of the respondents in the main study, the inferti lity paths of these forty people are covered in depth. Some questions in the interviews were found probing . " It's not something you can think about for fi ve minutes and then have the answers like that. I mean it really is a soul searching question. " Ian From the three snapshots of interviewing in the longitudinal study, an original model of infertility treatment status was develop - to understand the positioning and movement of people's infertil ity treatment decisions over time. This is model is introduced and applied to the participants in Chapter Three. The four treatment statuses are ' active' for those having infertility treatment; 'non-active' for those having a break between treatment cycles, while intending to resume; 'in limbo' for those who cannot decide whether to resume treatment, or stop and move on ; and ' stopped ' for those who have clearly quit infertil ity and moved on to a new stage of life, either with children from various means, or without children. Participants were found to take multiple steps; to enter, exit , re -enter phases at any point ( Bitzer, 2002:14), usually moving from being active, through to being non-active or in limbo, towards 'stopping' treatment. The very nature, direction and length of the fertility treatment path was fluid, and highly individual (Gordon & Barrow, 2000 : 504 ), and involved changing treatment paths and the timing of treatment along the way . Being in limbo has not been sufficiently recognised in the literature, despite being relatively common, as this woman says. "The other thing was feeling in limbo ... because I didn't have any control over really where my life was going. " Sarah 9 From that vast mountain of data, results on treatment decision-making were formulated. Chapter Four covers key participant decisions on starting treatment after diagnosis; continuing treatment through the maze of different options; to stopping treatment, either when people have enough children or have had enough treatment. The influences of gender and parental status on decisions are discussed, along with spiritual values. The main limits to having further treatment are identified, and those that got extended with time. How participants made their treatment decisions, and how this fits with decision-making literature, is reviewed . What respondents experienced, or anticipated feeling, after moving on from treatment is discussed. Moving on is particularly challenging for those without the children they yearn for, expressed by this woman. " Sometimes I do feel a lack of purpose... Ultimately I would still love to have a child. Until I get over that, I don't think I will ever move on." Maureen Professionally, I was interested in the role of counselling with infertility treatment decision-making. Chapter Five focuses on the implications role of infertility counsellors - helping people to make considered informed decisions with which they can live (Glazer & Cooper, 1988: 37). Results cover what participants would have found helpfu l for their decision-making and this is compared with the decision-making counselling they actually received. Accessing counselling to assist with decision-making is discussed, as is the strong call for follow-up counsellor contact after treatment failure. Results showed that most would find it helpful to have counsellors disclose a personal experience with infertility, as this man sa id. " Because you 're in the same boat as people you're questioning, I feel you have more feelings towards the people you are interviewing... Someone who has been trained up ... they can ask all the right questions and they can nod their head at the right time and do all the things visibly and outwardly, but they can 't feel it. They can't know... I 've got the feelings, Jane's got the feelings, you've got the feelings.. . People who haven't can't understand that." Bill Chapter Six concludes the thesis and is divided into three sections. Firstly, the context of choice in assisted reproduction is re-examined and results of the thesis reviewed, along with their implications for people experiencing 10 infertility. Secondly, questions are raised as a result of the research, and directions for professional practice offered to those providing infertility services, including counsellors. Finally, the research process is reviewed, with direction offered for further study of infertility decision-making. "I hope you write a book out of it, or even a paper or something, that everybody can use that's here... I just figure that if it's done here and it's by us, for us and that everyone will have a better understanding of it, because we've got our own lifestyle... I just hope you do it." Joe 11 CHAPTER 1 Infertility Treatment Decisions: Context and Perspectives In order to understand how infertility treatment decisions are made, it is necessary to understand what infertility is and what it means to people. This chapter firstly provides definitions and descriptions about infertil ity and treatment. The second part of the chapter discusses the issues and themes in the current literature that inform professional and academic perspectives on infertility treatment decision-making. "You feel that there's no way ... without having children. You can't visualise a future without them. " John What is infertility? The definition of infertility can vary. Infertility is generally defined as being unable to conceive a viable pregnancy following one year of regular, unprotected sexual intercourse (Coney & Else, 1999:11) between a man and a woman, or an inability to carry a pregnancy to live birth (fertilityNZ, 2003a). While in Australia, a couple is regarded as inferti le when they have not conceived after twelve months of unprotected sexual intercourse, the American Society for Reproductive Medicine (formerly the American Fertility Society) differentiates according to the woman's age - one year of trying to conceive for women under 35, and six months or more for women over 35 (Berger et al., 1995:54). Alternatively, the World Health Organisation (WHO) specifies the period of trying to conceive as two years. As the rates of pregnancy natura lly increase over the months spent trying to conceive (Jansen, 1996; Keye, 2000), the definition of infertility affects infertility statistics (Gazvani, Ozturk, & Templeton, 2002). Some argue that twelve months is too short a time to define infertility, resulting in the over-diagnosis and over-treatment of infertility (Stephenson & Wagner, 1993:3) . This man, whose wife later went on to conceive naturally after nine years of infertility, said: 12 "I don't see infertility as being childless after one year. If it's possible to have a child, then I accept that we keep going." Arthur The New Zealand Department of Health Discussion Paper on Infertility emphasises the perception of infertility as a problem, for those who are unable to conceive (Brander, 1992: 7). The American Infertil ity Association, (RESOLVE & Aronson, 1999: 5), describes infertility as both a disease and a life crisis, which affects people of all ages, ethnic backgrounds, socio­ economic groups and both sexes, interfering with one of the most fundamental and highly valued human activities - that of bu ilding a family . Therefore, infertility is defined according to duration, physical inability and psychological perception as a problem. "Infertility is a very real thing. It is not just a statistic. It affects people. It affects a lot of people and I don't think it's something that we shou ld be ashamed about... I think of it as being no worse than being an inability to have cats, because you're allergic to them. It is something that needs to come out in the open ... There are a lot of people out in the world that are infertile and for a long, long time it has been sort of shoved under the carpet and forgotten about." Harry Infertility is a label, which is difficult to define. It is both descriptive and prescriptive. Some of these conceptual and methodological difficulties include differentiating between fertility and fecundity; permanent and temporary infertility; and voluntary and involuntary fertility and infertility. (See Appendix 19 on being childfree.) Infertility and fertility can merge into one another, one condition becoming the other as individual reproductive choices and circumstances change over time (Sandelowski, 1990:477). The language surround ing infertil it y is often defined by lack and sometimes by want, for example, 'infertile' (not being fertile), 'childless' (being without chi ld ), 'non-parent' (not having parental status) and 'childfree' (being free of children). A philosophical debate exists about whether infertility is a disease in the usual sense, and therefore whether it belongs wholly to the medical domain of diagnosis and treatment and what role the social and cultural context has for framing the condition of infertility. These questions and perspectives are considered later in this 13 chapter. There is similar discussion about infertility being a disability, which has implications for the government funding of infertility treatment. "In as far as disability, I've often thought that it would be much easier to not have a foot or, you know, other disabilities that are obvious... I don't want to have sympathy or anything like that, but it's such a private hurt." Charlotte There are also differing definitions between primary and secondary infertility. Primary infertility is defined as the failure to conceive by women (or couples) who have never conceived, while secondary infertility affects women (or couples) who have previously conceived but who fail to conceive again (Keye, 2000: 27). Confusingly, secondary infertility also refers to people who have borne a child previously, but are subsequently unable to become pregnant or have a live child (Simons, 2000:313). For the purposes of this thesis, primary infertility will apply to those people who have not given birth to a child, while secondary infertility shall apply to those who have been unable to successfully have a second child. Secondary infertility is commonly a neglected, as infertile parents are uniquely isolated and do not get the same understanding or sympathy, as those who do not have any children. Decision-making about infertility treatment is complicated by particular concerns about the existing child - being an only child or having a sibling who is adopted or the result of donor gametes (Simons, 2000:321). The consciousness of time running out in which to 'sensibly' have a sibling is also an issue. Several respondents had only one child and wanted more. "Prior to having a child ... there was a gap in our lives. I suppose now we have got a child, that bond has been filled. But ... Olivia wants another child and ... we haven't been able to accomplish that." Vladimir Infertility crosses sexual orientation and relationship status. People who seek treatment for infertility may not in fact be childless or medically infertile, as one or both partners may have a child or children from a previous relationship, or a woman may not have a male partner. Those who are single or in a lesbian relationship, while often not physically infertile, are socially infertile. Historically, it was assumed that single women should not be, and lesbian women were not, mothers (Jacob, 14 2000:267). Nowadays, both groups represent an increasing proportion of consumers of infertility treatment services, mainly on a self-funded basis. Along with older women and remarried couples, lesbian and single women constitute a swelling social change of those accessing reproductive technologies (Burns & Covington, 2000: 19). The single or lesbian woman who is infertile still suffers from the additional burden of being seen by some as less acceptable or deserving of infertility services (Stotland, 2002: 18). Several authors present the issues of single women and lesbian couples using assisted reproduction (Baetens, 2002; Boivin, 2002b; Daniels & Burn, 1997; Haimes, 2002; Jacob, 1997, 2000). Prevalence of infertility As well as the definition of infertility varying, the prevalence of infertility is also subject to diverse estimates. Internationally, and within New Zealand, it is generally understood that about one in every six couples will experience infertility at some point in their lives (fertilityNZ, 2003a). This commonly cited figure is probably a major underestimate, as the cumulative incidence of infertility is cited as 26.4 percent of New Zealand women at some point in their lifetime (Gillett, Peek & Lilford, 1995: 1). Approximations of infertility range from 10 to 15 percent in western countries (Tinneberg & Gohring, 1998:49), though it is cited as being as high as up to 28 percent of 25 to 45 year old women, at some point in their lives by Schmidt (1998b:63), again a cumulative figure. However, the percentage of people, at any one time, who have been unsuccessfully trying to conceive for more than twelve months is actually quite low, estimated at about five percent (personal correspondence from fertilityNZ, Sept, 2003). Appendix 14 contains more information from Statistics New Zealand about the prevalence of infertility. The incidence of infertility is probably rising due to the increasing age of women having children and the incidence of sexually transmitted diseases (Adair & Rogan, 1998:263; Diamond et al., 1999:7), and exposure to environmental toxins (Leiblum, 1997:8). Others say that infertility rates have remained surprisingly steady for up to a century (Burns & Covington, 15 2000:5; Keye, 2000:27), although they may be more visible because of an increase in the absolute numbers of the infertile among married couples of the baby-boom generation (Sandelowski, 1986:440). These estimates do not include single women or lesbian couples who wish to conceive. However, there has been a dramatic increase in the use of medical services for infertility, due to the tendency for delayed childbearing, the ageing of the baby-boom generation and the increasing number of treatment options (Gillett et al., 1995:13). This man notes: "We're not the only ones out there... It's almost like every other night you watch TV and there's something on about childless couples or infertility or baby kidnapping." Murray The rates of secondary infertility are also subject to varying estimates, and are affected by the precise definition of secondary infertility. In terms of conceiving a second child, it may be as low as ten percent (Berger et al., 1995:312), or as high as half of all infertility rates (Diamond et al., 1999:9). It may be statistically more common than primary infertility (Simons, 2000: 313), or seventy percent of infertility rates, if referring to infertility after a previous conception (Keye, 2000:27). As with primary infertility, aging clearly has an effect on secondary infertility rates. The actual rates of secondary infertility are hidden by the presence of a child in the family and the numbers of infertile parents who actively seek medical help (Simons, 2000: 313). "Our second child was more a symbol that we were now a family and having two children meant no-one asked you when you were having your next child (but she died)." Martin There are warnings of inflated figures of infertility (Stephenson & Wagner, 1993:2). It is difficult to access precise numbers of people with fertility problems, because of the private nature of the issue. Unless people have a recognised infertility diagnosis, are having treatment, or are adopting (usually with no other children), their numbers are likely to remain hidden. The actual incidence of infertility in the population is impossible to state with any certainty (Leiblum, 1997:9), as Cameron reiterates in terms of 16 childlessness in New Zealand (1997:202). This man expresses a commonly felt sentiment. "You hear statistics that there seemed to be ten percent of the population was infertile, then it was twenty percent, now it seems to have climbed to about thirty three and a third... When Anna and I were first involved ... I felt that I was pretty unique." Dillon These sheer numbers, about 26 percent of New Zealand women at some point in their lives (Gillett et al., 1995:1), reveal that infertility is a relatively common experience, which warrants our professional and academic attention. Infertility is almost always unexpected cris is (Leiblum & Greenfeld, 1997 :83). The experience of infertility brings enormous repercussions physically and emotionally, and for some financially, socially, spiritually, morally, sexually, and professionally (Zoldbrod, 1993 : 5). Types of infertility "The problem is on my side; you sometimes think 'well maybe they should just go off and marry someone else and have children'." Debbie There are many different causes of infertility, which can be divided into male, female, male/female, and unexplained infertility. Around 85 percent of infertility can be explained. Male problems account for about thirty percent of explained cases; female problems account for another thirty percent; and a joint male/female cause for about 26 percent (WHO, cited in Gillett et al., 1995) . Of the known causes of infertility, the most common are ovulatory disorders; abnormal semen; abnormal fallopian tubes; and other problems being linked to the cervix and uterus, immune system; infection, and sexual dysfunction (Keye, 2000:27). The myriad of known contributing factors to infertility includes hormonal problems; congenital problems; infections; scarring; physical blockages; environmental factors; increasing age (Coney & Else, 1999); obesity; heavy smoking or alcohol intake; and vasectomy (fertilityNZ, 2003c) . About 15 percent of infertility cannot be explained. Several study respondents spoke of the difficulty of having an unexplained, or ideopathic, diagnosis. 17 "We go through all the options. Is it the sperm? Is it the blood? Is it the chemicals inside you or whatever it is could be killing it off. And you try everything ... and they say... ' Everything is alright', and you can't understand why." Dave Types of treatments People experiencing infertility are faced with three options (Daniluk, 2001b122). They can accept their childlessness, pursue alternative parenting arrangements (such as adoption), or seek medical solutions. From the start of last century, women, and sometimes their husbands, have sought medical help for involuntary child lessness (Pfeffer, 1993: 1). Assisted reproductive technology (ART) can be defined as the use of medical technology to attempt to achieve a pregnancy (Coney & Else, 1999: 13). The recent swift development of new reproductive technologies to bypass or overcome infertility has totally changed the way that conception can take place. Assisted reproduction now includes drug stimulation, surgery, intrauterine insemination (IUI), donor insemination (DI), in vitro fertilisation (!VF), intracytoplasmic sperm injection (ICSI), sperm extraction techniques, egg and embryo donation, ovarian freezing, surrogacy, and gestational carrying . These new treatments for inferti lity have no precedent in history. Infertility treatment offers the significant and attractive possibility of a child. As this study drew respondents from two infertility treatment sources, donor insemination and in vitro fertilisation, it is these treatments, which will now be focused on. Appendix 15 provides more detail on DI and !VF, including success rates, access to treatment and cost. "There's no point going into a donor insemination programme if there's no problem with your sperm, so you've just got to know what exactly your problems are and accept them and go from there." Jade Donor insemination: bringing in a third party Donor Insemination, or DI, is primarily a treatment used for male infertility. It bypasses the actual male cause of inferti lity by involving sperm donated by a man outside the relationship. Historically, DI is the 18 "oldest of medical interventions designed as a response to infertility" ( Daniels, 2002 :31). It is also cited as being the simplest, most widely used, least expensive, and probably the most effective form of alternative method of conception (Lasker, 1998:7) and alternative method of bui lding a family (Zoldbrod & Covington, 2000: 325). As such, it means that the male partner is not the genetic father. "The other negative side for me was feeling a bit sad at times that Jim isn't the natural father and wishing that he was." Rose Like other treatments for infertility, DI requires decisions. These include: where to have treatment; when to schedule treatments; how many cycles to undergo; how many years to try; how much money is to be invested in the attempt to have children; and at what point other options like adoption or not having children at all are looked at. At a more intimate level, within the relationship, informal decisions, such as who wi ll take responsibility for the 'organising' of the various aspects of treatment is required. However once the initial decision to proceed is made, there are particular decisions to be made with DI, which extend to other third party reproduction. A known or unknown donor must be selected, which could have implications for generations, especially in medical terms. Unless the donor is a family member, 'genealogical bewilderment' (a term which was borrowed from the adoptee rights movement by Cooper & Glazer, 1994) may be experienced. People using donors recruited through fertility clinics need to select a donor based on the presented characteristics. This man wondered about the donor of his child. " We are appreciative of donor-type people who make those efforts and ... those people must wonder what's happened to parts of them." Frank Disclosure is a major parenting issue - whether to tell the donor child, or not, of how they were conceived is a matter of much debate (Adair, 1998; Adair & Rogan, 1998; Daniels & Burn, 1993; Hargreaves, 2002; Rumball & Adair, 1999). These decisions are influenced by the family structure, family history, and surrounding social context (Burns & Covington, 2000 :462). Prior to having DI, there is much attention paid to the issues 19 involving the child's rights to know about their genetic origins. In New Zealand there has been a strong move to encourage parents to tell their donor children of their origins, as happens with adoption in this country (Adair & Dixon, 1998). It is likely that the unique cultural heritage of New Zealand has made this possible, given the importance to Maori of knowing their whakapapa or genealogy. For some parents, the decision is less about whether to disclose to their children of their donor origins, but more the process of how and when to disclose. Decisions need to be made as to what age to tell them, how much to tell them and also when to tell others in their family, social or other circles (Daniels & Haimes, 1998; Snowden & Snowden, 1998). The reactions from others to disclosure can raise particular issues, cause stresses (Vercollone et al., 1997) and create ongoing personal dilemmas for people having DI, as this man relates. "Dad questioned the need to tell (our daughter) that she was a donor child, for instance, and .. . kind of reinforced the generational gap, nothing major." Jim DI decisions may involve the genetic blending of families. Some families may have a fully genetic child, but because of funding or fertility issues then choose to try to have a donor child. For those who already have one donor child and desire another, ideally sperm is available from the original donor. If not, then a second donor needs to be chosen, adding to the genetic make-up of the family. Currently, with the prevalence of !VF using micro-injection techniques, some donor families are then attempting to have a fully genetic child through !VF. This man explains the attraction. "This micro-injection I think ... for me personally, that's quite exciting. I'm too long in the tooth and too world weary now to get my hopes up about it, but it certainly puts a bit of a sparkle in me thinking about it." Bill In vitro fertilisation: a complex process In vitro fertilisation, or !VF, is a highly technical process developed originally for women with irreversible tubal problems. In the past twenty years, it has changed from being an experimental procedure to a widely used and accepted medical treatment (Burns & Covington, 2000:8), for virtually all forms of infertility (Keye, 2000 :42) including male factor, ovulatory, endometriosis and ideopathic (or unexplained) infertility. 20 Significantly, it is now commonly used in conjunction with sperm extraction techniques, intracytoplasmic sperm injection (ICSI), donor egg, and donor sperm. In comparison to DI, IVF is complex and demanding. It involves many injections of fertility hormones to produce multiple eggs, which are aspirated out of the ovaries, under anaesthetic. Meaning fertilisation 'under glass', the eggs are mixed with sperm, and depending on fertilisation, up to three embryos are transferred into the woman's uterus. Any remaining embryos of good quality can be frozen in liquid nitrogen for later use by the couple. The public does not generally understand IVF, as this man says . "People ... probably don't even know what the initials IVF stand for ... There are times I 'd like to tell the whole world that we've been through the IVF cycle, but at the end of the day it's our business and it's a very private issue that we are very protective of." Bob A higher number of IVF attempts is directly associated with an increased likelihood of success (Dor et al., 1996; Fukuda et al., 2001; Sharma, Allgar, & Rajkhowa, 2002 ; Roest, van Heusden, Zeilmaker, & Verhoeff, 1998) . This influences the decision to continue with treatment. Along with the number of IVF cycles, treatment success is most importantly influenced by the woman's age and to some degree by the ca use of infertility. Many male respondents from the study likened the chances of conceiving through IVF to a numbers game. "To me IVF is a bit like throwing a six on a dice and until you have five or six goes you can't really say you've given it your best shot. In Australia, one woman got pregnant on her thirteenth treatment and that is incredible." Paul People undergoing IVF are faced with many decisions once the initial decision to proceed is made . These include how many cycles to undertake (in terms of stress, cost, age, side effects and risks); how frequently to have cycles; how many embryos to have replaced; and whether to freeze surplus embryos. Decision-making is complicated by surplus embryos, which are created through IVF (Graumann, 1998). People who have surplus embryos left after completing their families have the choice of donating them to other inferti le people, donating them to research, or 21 discarding them. Embryo donation raises ongoing ethical, legal and psychological questions (Leiblum, 1997:4 ), similar to sperm donation and adoption . One man with frozen embryos said that their donor IVF child is : "not a plastic baby, not a test-tube baby. And if there's two more of those coming up on the supermarket shelf, then we want to see that they have a good life." Frank Adoption Adoption is an option for childless couples seeking to have children, and was a successful way of building a family for several participant couples. There are crucial differences in choosing between treatment for infertility and adoption which influence decision-making. Adoption does not cure infertility, but like the use of donor gametes and surrogacy, provides a way to overcome childlessness. Medical intervention is oriented towards creating people's own child (even with donor gametes), whereas adoption services are interested in what people offer someone else's child (van den Akker, 2001) . Adoption has been practiced around the world for thousands of years, for reasons of infertility, family breakdown, death and the sharing of children among the wider family. Adoption has changed significantly in the last thirty years, and is now less of a viable option to build a family than it used to be (Salzer, 2000 :391). However, it remains an alternative to treatment. "There are other options to infertility and IVF ... and adoption really is... I was really nervous on the first when we adopted (our son), because I didn't know how I would accept the fact. But it was just an absolute breeze, no problem, so with (our daughter) it just wasn't an issue, in acceptance and experience." Arthur Adoption can be a difficult and confusing choice to make. Deciding to adopt a child is a complex process involving multiple shifts in personal identity and role enactment (Brodzinsky, 1997:249). It is a positive alternative for people who regard 'parenting' to be their key priority, rather than that of being a genetic or birth parent (Johnston, 1994: 193) . Crowe (1985) reported that women were more positive about adoption than their male partners. While advances in assisted reproduction have complicated decision-making about infertility treatment, they have also complicated 22 decision-making around adoption (Brodzinsky, 1997; Daly, 1988, 1990; Daniels, 1994; Holbrook, 1990; Salzer, 2000) . Adoption is an option before, during and after fertility treatments have been exhausted. Daly (1990) found some people were sequential, in that they needed to let go of biological parenthood before identifying as adoptive parents, while others pursue both goals simultaneously, as a two­ track approach to cover both bases (Diamond et al. , 1999:67) . One study of IVF couples found that half had already made arrangements t o adopt, while another quarter was open to adoption (Callan and Hennessey, 1986). Similar patterns can be found in negotiating infertility treatment decisions. For most, the decision to adopt, or use third party reproduction (donor sperm, eggs or embryos) does not take place quickly or easily, and is often viewed differently within the relationship (Salzer, 2000: 396 ). Almost always, the process starts with efforts to have one's own biologica l child (van Balen , Trimbos-Kemper, & Verdurmen, 1996) before the choice to pursue adoption is made ( Brodzinsky, 1997:249). Given the high demand for adopted ch ildren, there are no guarantees of a successful placement. "Everybody who is infertile realises that resources for solving that problem are scarce and there is only a certain number of chi ldren up for adoption and with all the other things, there's waiting lists." Harry The process of negotiating different treatment and adoption pathways towards parenthood has been called ' mazing ' (Sandelowski et al., 1989). Adoption, which may have been previously discarded as an option early during infertility treatment, may be considered more seriously as time progresses . During this emotional and complex process, people usually cognitively reframe their personal ideals of parenthood to be consistent with their practical options. With the decision to terminate infertility treatment or accept that treatment may not work, people relinquish their hope of a genetically related child, making the option of adoption more attractive (van den Akker, 2001: 156). Appendix 16 contains information on adoption figures and issues. 23 Why is infertility a problem? To answer this, one must look at why people want children. The motivations to become a parent are universa l and timeless - influenced by biolog ical drive; cultural norms; religious mandate; status; becoming an adult; love ; pleasure; purpose; economic value; ego satisfaction; role fulfilment; and power (Burns, 2000 :449; Ca llan, 1985a: 1). "Biological ly speaking, reproduction is the ultimate purpose of every living being... The biological imperative to reproduce is reflected in a psychological and behavioural imperative. Infertility frustrates that imperative" (Stotland, 2002: 13), as this woman explains. " For me, being a wife and mother was a core thing, what my life was all about or going to be all about.. .. You're often perceived by other people as being a selfish career woman. It couldn't be further from the truth.. . I still feel like a mum - a mother without children." Charlotte The wish for a child depends on a complex interplay of many factors: individual instincts; personality development; socio-cultural influences; economic factors; personal life changes; interpersonal relationships with partners; and family dynamics (Kentenich, 2002: 1). Other pertinent reasons for wanting children may be to please parents; cement a marriage or relationship; prove youthfulness, virility or fertility; have someone to love and be loved by; have someone look after one in old age, become a grandparent; avoid loneliness and reg ret in old age; and connect to the next generation (Sewall, 2000 :419). Infertility research has also uncovered a desire for happiness, well-being , and personal and relationship completion (Halman, Andrews, & Abbey, 1994). Infertile women are seen to place greater emphasis on fulfilling gender-role requirements, while infertile men are more likely to be motivated by the marital completion that children are seen to bring (Newton, Hearn, Yupze, & Houle, 1992). The characteristically long infertility journey triggers a process of thinking and rethinking about why they want to have children, a consideration not usually reflected on in such depth by the fertile population. "It has been a really hard part of my life .. . much harder than coping with the death of our child. I mean that was awful, but as every day went by, the pain could 24 get !ess and at the end of two years, you could smile properly and feel warmth in your heart. But not with infertility - there was always a pain with infertility." Sophie As the woman above reveals, the inability to have children is an experience of profound loss and suffering for men and women (Sewall, 2000:411). If at some point in their lives, 26 percent of New Zealanders (Gillett et al., 1995: 1), experience a lack of control over such a significant life event and adult role, then infertility is clearly a significant problem in our society, both in terms of its prevalence and also in terms of the debilitating impact it has on people's lives. Infertility's legacy often includes compound losses, including the long-term yearning for a child, intrusive medical technologies, possible third party reproduction, a tenuous, highly anxious pregnancy, and frequently a very high investment of time, energy, and money to have children (Burns & Covington, 2000:449). Infertility is a deeply life­ changing experience because it challenges so many fundamental assumptions about how one's life should be (Becker, 2000:206). The issues triggered by infertility have been the focus of much research and writing, reviewed in the following sections. Identity as infertile "The experience of infertility has influenced my identity. .. in how I see myself.. . I am different. I haven't gone through the same things as they have." Jade The ability to reproduce is central to identity, a sense of adequacy and normalcy, both personally and socially (Stotland, 2002: 13). Children provide a 'passport' to a normal mainstream lifestyle (Bartlett, 1994:23). When that ability is blocked by infertility, a fundamental deficiency is created and risks being internalised. As time passes without a successful pregnancy, an 'infertile identity' can take root (Diamond et al., 1999: 12). This internalisation of the infertility experience (Olshansky, 1987) involves infertility becoming part of the identity and self-definition of individuals. Infertility is an invisible 'defect' to others, but it is seen to increase feelings 25 of inferiority, difference and spoiled identity (Matthews & Matthews, 1986a; Miall, 1985), as this woman says. "You don't want to be treated as someone with a disease, which a lot of people seem to think that if you're infertile, you're a diseased person. Well you're not, you're the same as what they are - it's just that you don't get a swollen belly." Margaret Being an other, or an outsider, in the search for a clear identity (Sandelowski, 1987: 151) that is not defined by negatives (childless, non­ mother, infertile, not yet pregnant) is challenging (de Lacey, 200la:14). Involuntary childlessness forces life goals and personal identities to be altered. The transition to non-parenthood is seen as profound as that to parenthood itself (Matthews & Matthews, 1986b). The ambiguity of identity as 'not yet pregnant' (Greil, 1991) leads to allsorts of other decisions being deferred, or balanced precariously between hope for one's future and the reality of one's present life. This includes decisions about career development and even the size of car and house (Daniluk, 2001c). This man initially planned his ideal family house. "We built our house for them. We had the right number of bedrooms and we had a big place and we worked out where all the different tree huts and BMX courses and things were to go and then of course it didn't happen - so we sold it." Paul The stigma of infertility As birth rates decline, children have increasingly been valued (Fox, 1982: 10) as emotionally priceless (Burns & Covington, 2000: 5). Children can be seen to provide existential meaning, identity and status, while those unable to bear children have been labelled impotent, unfruitful and barren (Diamond et al., 1999:5). Those facing infertility may be less shunned today, especially older women who are known to experience less stigma, stereotyping and devaluation (Lang, 1991) and less regret about their childlessness (Alexander, Rubinstein, Goodman, & Luborsky, 1992). However, some participants equated the stigma of not having children with a disability. 26 "It's almost like having a lifelong disability that you have to learn to live with. And what would be normal options in life just aren't available." Michael Procreation is generally taken for granted (Cameron, 1990) and considered to be a natural and central part of heterosexual marriage, gender identity and normal adult life (Baker & Bertenshaw, 2002:2). Stigma is a common experience of infertile women and men, involving feelings of loss, role failure, lowered self-esteem (Burns & Covington, 2000: 11) and a sense of exclusion (Franklin, 1990: 205). Inadequacies are deeply felt by those who experience infertility, as they are involuntarily inserted into a 'discourse' of infertility. This man talked about the internalised impact of that stigma . "We haven't grown two heads! We're still the same people outwardly. And inwards looking ... the thought will come up now and next week that we can't have children, but we might not show that openly." Ian Fertility is important for fulfilling cultural norms and social acceptance - infertility may leave a person feeling powerless, inadequate, unnatural, incomplete, or like an outsider. Stigma, and the perception of difference, is the personalised consequence of the social pressure to have children (Hunt & Monach, 1997: 191) . While clearly relevant for women, stigma is also a key concept for male infertility, as it is common for men to feel damaged, defective, worthless, guilty, sad, lonely, isolated, and stressed (Zoldbrod & Covington, 2000: 329). This childless woman recognised the social pressure to have children. "Society... expects couples to have children and expects women to want to have children. I believe there is a general sort of looking down on people who don't have children and society is still very much geared around, you know, the next generation." Lois There has been much written on the subject of the stigma of infertility (Adair & Rogan, 1998; Anleu, 1993; Greil, 1991; Letherby, 1999; May, 1995; Miall, 1985, 1986, 1989; Sandelowski, 1987, 1988; Sandelowski & Pollock, 1986). Even those people who achieve parenthood after infertility may experience or fear judgement, isolation, social stigma or shame regarding the way that they became parents (Burns, 2000 :468). Stigma is 27 more pronounced in some cultures and religions, where fertility is highly and overtly valued (Sewall, 2000 :420). This Pacific Island man explains: "It's like having an extension of your tree, where you extend branches from your tree that have been there before and you're putting branches on it and passing on things that you have learnt and things that have been passed onto you . That is very important to me and my culture. To have chi ldren is like to have wealth ." Tama Infertility: that thief of control The loss of control that infertile people face forms a significant part of life , both in terms of centrality of identity and duration over the life span (Cook, 1987; Daniluk, 2001a; Diamond et al., 1999; Greil, 1991; McCormick, 1980; Mahlstedt, MacDuff, & Bernstein, 1987; Matthews & Matthews, 1986a; Paulson, Haarmann, Salerno, & Asmar, 1988; Peoples & Ferguson, 1998; Schmidt, 1998b; Woollett, 1985). Along with the loss of fertility, there are multiple losses, both actual and potential created by infertility, which cause grief (Menning, 1980). These losses include: the 'dream child'; a potential relationship; hopes and dreams; future plans; marital satisfaction; self-esteem; choice and control; a bel ief in the natural justice of life; confidence and security; an unbroken family blood line (Houghton & Houghton, 1984, call it a fear of 'genetic death'); the parenting role and biological fulfilment; sexual spontaneity and enjoyment; privacy and spiritual confidence; social outlets; psychological stability; positive body image and functioning; the experience of pregnancy, birth and breastfeeding; and for other family members, the pleasure and perceived status of being a grandparent or close relative; (Conway & Valentine, 1988; Deveraux & Hammerman, 1998; Hunt & Monach, 1997; Mcfarlane, 1990; Mahlstedt, 1985; Ryan, 1993; Saunders, 1998; Zoldbrod, 1993). " I 've sort of felt a bit of loss of personal esteem, and don 't probably feel as fulfilled." Jim Historically, men invested in having children, especially sons, as chattel property and spiritual heirs (Burns & Covington, 2000: 5), which still resonates as a loss for some men. Men are also seen to experience a loss of sexual potency with infertility (Lee, 1996). Miscarriage and stillbirth are also primary reproductive losses, which can be experienced more 28 frequently by those troubled by infertility (Conway & Valentine, 1988). These multiple losses are significant, enormously personal and raise complex challenges to be worked through in the long-term, particularly in moving on from infertility treatment (Peoples & Ferguson, 1998: 157). Many of these losses are invisible to outsiders as ' silent tragedies' (Conway & Valentine, 1988:49), thus receiving little recognition or support. Appreciating the many personal losses of infertility aids the understanding of why people make the treatment decisions they do. Infertil ity is equated with having 'no choice' (Monach, 1993). "I wou ldn 't wish infertility on anyone. I th ink it is such a cruel thing. It is a choice being taken away." Debbie A life in crisis Infertility is an unanticipated crisis in a family's life cycle ( Frank, 1990b:56; LePere, 1988:76). The emotional pain caused by infertility is likened to a life crisis and well documented (Abbey & Halman, 1995; Batterman, 1985; Cook, 1987; Covington, 1988; Daniluk, 1988; Leiblum & Greenfeld, 1997; Menning, 1984; Read, 1995) . The crisis of infertility presents a significant hurdle that threatens important life goals and taxes personal resources ( Burns & Covington, 2000: 12). As a ' decisive moment' (Saunders, 1998: 139), many infertile women report that infertility is the worst crisis of their lives, worse than divorce or the loss of a parent (Mahlstedt et al., 1987). Half the women in one study found infertility to be the most upsetting experience in their lives, compared to only 15 percent of the men (Freeman, Boxer, Rickels, Tureck, & Mastroianni, 1985). Depression is a core experience of that infertility crisis, as this woman revea ls. " While I was badly depressed, there wasn't any point... I was so obsessed and scared. Scared that I might actually do something silly.. . I get pretty scared sometimes about being left on my own, w ith Michael being that much older than me... It has not been a choice." Charlotte Becoming a parent is a major developmental milestone, deepening the sense of self, broadening connections to the community and acting as a bridge to past and future generations (Brodzinsky, 1997; Ryan, 1993; van den Akker, 2001). Life is profoundly disrupted by infertility (Becker, 1994, 29 2000; Greil, 1991). Most people expect certain life events to occur at particular times in their lives, and an internalised developmental clock signals whether this is 'on time' or 'off time'. Events, like parenting occurring within an expected time frame and can be anticipated, rehearsed and managed, without debilitating an individual's capacity for coping, or disrupting their life continuity (Moos & Schaefer, 1986:7). But infertility disrupts this internal clock, as this man illustrates. "It is like life be ing an escalator and all your friends are carrying on the escalator and you have sort of been popped off the escalator at some stage and you just can't keep rolling on continuing like you had planned." Paul The focus on stress and coping A vast body of literature has emerged looking at the stress caused by infertility and how people (usually women) cope with infertility and its treatment (Becker & Nachtigall , 1991; Berg & Wilson, 1991; Berg, Wilson, & Weingartner, 1991; Blenner, 1990, 1992; Bo iv in, Takefman, Tolundi, & Brender, 1995; Campbell, Dunkel-Schetter, & Peplau, 1991; Collins et al., 1992; Daniluk, 1988; Davis & Dearman, 1991; Damar, 1997; Damar, Broome, Zuttermeister, Seibel, & Friedman, 1992; Damar, Seibel, & Benson, 1990, Dunkel-Schetter & Lobel, 1991; Edelmann & Connolly, 1986; Freeman et al., 1985; Greil, 1991; Laffont & Edelmann, 1994b; Leiblum, 1997; Litt, Tennen , Affleck, & Klock, 1992; Mazure & Greenfeld, 1989; Menning, 1980; Nachtigall, Becker, & Wozny, 1992; Newton, Hearn, & Yupze, 1990; Sandelowski & Pollock, 1986; Sandler, 1986; Stanton, 1991; Stanton & Burns, 2000; Stanton & Dunkel-Schetter, 1991; Wright, Allard, Lecours, & Sabourin, 1989; Wright et al., 1991). The psychological distress literature reports the infertile population, while distressed during specific periods of treatment, is not more depressed or anxious in a clinically significant way (Burns & Covington, 2000; Dunkel-Schetter & Lobel, 1991; Greil, 1997). Nevertheless, as infertility is painful and usually prolonged, anxiety, depression and uncertainty are commonly experienced (Berg & Wilson, 1991; Hunt & Monach, 1997), as this woman acknowledges. 30 "I would cope less. I listen to talk-back radio and I hear all these people go on and on about that baby up in Auckland who was kidnapped, but.. . I could do that tomorrow, no sweat. I heard the really angry feelings, and the only person I felt angry for is the birth mother. I actually began to think I was really wacko, because ... everyday I could see myself as the kidnapper. I hate all these solo mothers around. I see them in Brighton, they sit there and they smoke and they hold onto these fairly new babies and I almost want to kick them. .. I have become a person I don't like. fl Norma The similarities of infertility to chronic illness have been noted (Burns & Covington, 2000; Diamond et al., 1999; Fleming & Burry, 1988; Greil, 1991; Kirkman & Rosenthal, 1999; Sandelowski, 1987; Woollett, 1985). This is because of the engulfing and constant nature of infertility, marked by uncertainty, which often lasts years (Daniluk, 2001c: 157). Infertility is likened to a 'chronic sorrow' (Unruh & McGrath, 1985), in which the pain of loss is not forgotten, but intermittently remembered and mourned, even long after infertility is an active issue (Burns & Covington, 2000: 13). This man openly spoke of suffering from infertility. "It's a difficult thing to accept, a difficult thing to cope... You can avoid a lot of the real issues that are perhaps cutting up your heart. .. Maybe that's one of the reasons I do so many hours work. Maybe that's one of the reasons I go to the pub quite a lot - it's easier to do that than come home to an empty house. fl Samuel Infertility is characterised by stresses that people often find the most difficult to cope with: unpredictability, negativity, uncontrollability (Stanton & Dunkel-Schetter, 1991), and ambiguity (Sandelowski, 1987). However, the repeated experience of treatment failure may be more significant in terms of distress, than the length of time spent in infertility treatment (Boivin et al., 1995). Each treatment is stressful, as this man notes "Our relationship is very stressful when Olivia is going through the programme, because.. . Olivia believes there is so much pressure on her to sort of 'perform' or to get pregnant, and she just gets that wound up, that it's like an atom bomb on legs." Vladimir 31 Gender differences Perhaps the most inherent ideas about gender, and what it means to be masculine and feminine, are based on our biological roles in reproduction (Deveraux & Hammerman, 1998:63). Research, and the popular literature (Michie & Cahn, 1997) have predictably focused much more on women in the experience of infertility and treatment, than on men (Greil, 1997; Lee, 1996; Newton, 2000). Fertility and femininity are linked - motherhood is central to the female role (Miall, 1986, Veevers, 1980). If parenthood is thwarted, then women are reported to find it more difficult, even if the cause of infertility is male (Andrews, Abbey, & Halman, 1991; Abbey, Andrews, & Halman, 1992a; Abbey, Halman, & Andrews, 1992b; Abbey, Andrews, & Halman, 1994b; Brand, 1989; Bresnick & Taymor, 1979; Daniluk, 1997; Laffont & Edelmann, 1994b; Mason, 1993; Wright et al., 1991), or there is an unknown cause (Daniluk, 1988). It appears that the impact of infertility is personalised and internalised in a more intense way for women, exemplified by this woman. "Always the purpose was the old tradition - to find someone, to love them, to have children, bring them up, watch them grow up, help them and be very family oriented. For both of us, family matters ... That was my main reason for being - family." Charlotte Indeed, infertile women have been found to be more depressed, anxious, frustrated, guilty, and isolated than infertile men (Abbey, Andrews, & Halman, 1991a; Bresnick & Taymor, 1979; Daniels, 1989; Daniluk, 1988; Greil, 1991; Laios, Laios, Jacobsson, & Von Schoultz, 1986; Newton et al., 1990; Slade, Emery, & Lieberman, 1997; Wischmann, Stammer, Scherg, Gerhard, & Verres, 2001; Wright et al., 1989, 1991; Zoldbrod, 1993) and suffer from lower self esteem (Abbey et al., 1991a). Treatment stress is also experienced more intensely by women (Collins et al., 1992, 1993; Leiblum et al., 1987; Seibel & Levin, 1987). Treatment failure appears to impact more negatively on women than men (Newton et al., 1992; Slade et al., 1997). However as time passes, these differences tend to diminish (Berg & Wilson, 1991). Women are found to be more likely to define themselves and their future in terms of motherhood (leaving a space in 32 their lives for children), while men tend to look towards their careers as a measure of their success (Greil, 1991; Sandelowski, 1993). "A man hasn 't got the same pressure on ... whereas a woman's role is to get pregnant and have kids. And that is where their worth was. It's changing to a certain extent." Derek There are fewer studies and less popular literature on the impact of infertility on men (Lee, 1996; Mason, 1993; Michie & Cahn, 1997; Owens, 1982; Roy Sherrod, 1995) and only recently has more attention been directed toward the male infertility experience (Newton, 2000: 203). However it has been suggested that men and women experience similar emotions concerning infertility (Michie & Cahn, 1997: 148) . Men 's reactions to inferti lity are more pronounced if there is a male cause of infertility (Abbey et al., 1991a; Mahlstedt, 1985; Zoldbrod & Covington, 2000). Men are socialised to 'get on with life ' by involvi ng themselves in other activities (Snarey, 1988; Snarey, Kuehne, Son, Hauser, & Vai llant, 1987). Men are found to use distancing, denial and avoidance to contain painful emotion; avoid losing self-control; and maintain a role supporting their partners; while they are less likely to seek social support or counselling (Deveraux & Hammerman, 1998; Freeman et al. , 1985; Lee, 1996; Mahlstedt, 1985; Stanton, 1991 ; Stanton & Dunkel-Schetter, 1991; Webb & Daniluk, 1999; Wright et al., 1991; Zoldbrod, 1993). Subsequently, men may find it difficult to mourn the many losses of infertility, let go of hope and reach an acceptance of their childlessness (Lee, 1996:72). Men also tend to be more private and isolated with infertility (Collins et al., 1992) contributing to an 'unwanted conspiracy of silence' (Lee, 1996:48). This DI father chose not to tell his family and friends about his son being a donor child: "There's more hang-ups and bad points to the fact of being infertile - in the respect of worry, not knowing, insecurity, actually just hiding the truth from friends and family. " Vladimir Why is it that men and women respond differently? Historically, women were considered responsible for infertility, either physically or psychologically (Leiblum & Greenfeld, 1997 :84 ). As discussed, the social context in which infertile men and women have been raised is different, and women must negotiate the experience of being unable to become .,.., .).) pregnant, give birth and have a child (Daniluk, 1997: 108). Even menstruation is played out within women's bodies, a graphic monthly reminder of the failure to become pregnant. Infertile women appear to be more committed than their male partners to the goal of having children (Daniluk, 1997: 106 ), to seek out information about infertility (Abbey et al., 1991a; Greil, 1991; Stanton & Dunkel-Schetter, 1991) and to pursue the medical options to achieve this goal (Greil, 1991; Ulbrich, Coyle, & Llabre, 1990; Wright et al., 1991). Decision-making: the labour of choice "There was no other choice if we wanted to have children. It just became a fact of life." Anna The word decide comes from a Latin root, meaning 'to cut away from'. Thus by its very nature, decision-making involves loss (Bombardieri & Clapp, 1984:91). Assisted reproduction, in offering an almost endless and tantalising array of treatments to the willing, requires a degree of decisiveness to deal with the choice available - even if it is choosing to defer or to not decide. Infertility forces people to make a complicated and prolonged set of decisions (Reading, 1989) that they do not want to make, and to live a life that they did not want to live (Clapp & Adamson, 2000: 523). Investigations and treatment for infertility mean facing decisions that people never imagine beforehand (Daniluk, 2001c:Sl). Those thrown into the infertility arena are required to work out these decisions for themselves. "Knowing what I know now, that if I met somebody at the beginning of their infertility journey, I would say that I really understand their deep desire to have a child ... But they have to decide: (a) how much of an experiment they want to be; (b) how much control they want to hand over to professiona Is; ( c) how much, for how long and how far they'll allow themselves to be enticed into the gynaecologists message that you have to try everything in order to feel that you've done everything you can to have a child - that pressure is there all the time; and (d) decide what their personal happiness and peace depend upon." Clare 34 There has been relatively little focus on infertility treatment decision­ making in the literature (Adler, Keyes, & Robertson, 1991:111; Cook, 1993:38). This is despite a rapidly increasing range of treatment options for people facing infertil ity since the 1980's, which some see as 'seducing' people prolonging their period of trying (Sutton, 1998:59; Zoldbrod, 1993:6). People are under mounting pressure to make the 'right' decisions that will not be regretted in years to come (Tymstra, 1989). They are likely to face treatment failure, limited public funding for treatment and limited supplies of donor sperm and eggs. Many 'sequential' decisions (Beckman, 1982:73) make up the complex infertility journey. Infertility decisions are repeatedly required (Frank, 1990b:56), with unknown consequences (Schmidt, 1998b:67). They are decisions that are completely outside the average couple's fertility decisions. Intense personal and relationship stress and conflict is likely to arise when making important decisions, which may interfere with the actua l process of making a satisfying decision . The more important the goal, the more intense the stress experienced with decision-making (Janis & Mann, 1977). The greater the personal investment and loss involved in the child quest, the more powerful the need for success (May, 1995: 236 ). There is no ' right' decision (Dyson, 1993:i; Ryan, 1993: 157), and often no straightforward path through the maze of decisions. There are also no guarantees in this quest for a child, despite how long and how hard people may try, and how deeply they yearn . There are few situations in life that prepare people for the challenges of infertility decisions. Most are caught unawares, unprepared and under-equipped for the choices and experiences that lie ahead. Why do people persist? Infertility treatment is compelling, both to try and to keep trying (Sandelowski, 1991). The arena of assisted reproduction offers a tantalising array of almost endless options are available to those who are determined or desperate enough to keep trying to have a child, and who can afford it. The avai lable literature suggests that the pursuit of medical 35 solutions to infertility is characteristically long and stressful (Daniluk, 1997; Schmidt, 1998a). Commonly people, especially women, tend to over­ estimate their chances of success with treatment (Adler et al., 1991; Berger, Goldstein, & Fuerst, 1995; Collins, Freeman, Boxer, & Tureck, 1992; de Zoeten, Tymstra, & Alberda, 1987; Eugster & Vingerhoets, 1999; Holmes & Tymstra, 1987; Laios, Laios, Jacobsson, & von Schoultz, 1985b; Leiblum, Kemmann, Colburn, Pasquale, & Delisi, 1987; Model!, 1989; Reading, 1989), contributing to treatment persistence, even when chances are quite low. This is because having children is valued more highly than a low likelihood of success (Johnston, 1993:31). The drive to persevere with fertility treatment is common, as this man who had tried 17 DI cycles unsuccessfully before moving onto IVF, typifies. "Human nature says 'well just one more, this might be the right one', so you change the donor .. . so you finish up with a 25 foot black man with 20 other kids and hope like hell he might be the one!" Peter There are several motivations for people to persist with infertility treatment. People experiencing infertility are noted as being committed to pursuing treatment (Greil, 1991 :98). The hope to have children is fuelled by a determination and desperation (Boivin et al ., 2001: 1301) to succeed, whatever the cost. Some people cope with ongoing treatment remarkably well. Age and finances also allow some people to continue treatment for many years, although advancing age creates special pressures to condense treatment. For some, having a child is worth any effort (see Chapter Four), despite clear personal and financial costs. Some people feel unable not to choose to continue on the treadmill of treatment, while treatments are available and while they have not been successful. Persisting with treatment may feel like a perfectly rational choice to those wanting a child and able to have treatment for infertility. Some people have got through other challenging situations with a positive attitude, so they may have a belief that being positive and persisting is rewarded in the end, as this man spells out. "As far as infertility goes ... keep going and don't give up hope, particularly if age is on your side. Certainly that message is loud and clear - if you persevere, you'll achieve." Arthur 36 The quest to bear a child can be a pervasive and compelling process for women (Daniluk & Fluker, 1995:43). An 'imperative for action' is more commonly noted in women (Greil, 1991; Woods, Olshansky, & Draye, 1991). This can drive a treatment treadmill sustained by hope, perseverance, endurance, courage, and patience (Herth, 1996: 747). Commonly, it is the woman who is unable to 'give up' trying (Leiblum & Greenfeld, 1997:95; Williams, 1988: 153) and who initiates another round of treatment (Daniluk, 2001a: 122). Women who continue with repeated treatment cycles are noted to be more optimistic about becoming mothers, than those who stop (Callan, Kloske, Kashima, & Hennessey, 1988:369). Some women regard the goal of having a baby as worth any effort, in terms of time, number of treatment cycles, money spent, physical discomfort and emotional strain, as did this DI mother, finally successful after thirty DI cycles. "Keep trying and keep going, no matter what. It's worth it in the long run, no matter what you need to or have to go through. The end result far outweighs anything else - don't give up." Anna New medical treatments for infertility act as a reward for trying harder and longer (Sandelowski, 1986:446). Infertility treatment frequently involves repeated cycles, which can be successful, but often are not. More cycles and new techniques provide new hope, but also can result in new disappointment (Becker, 2000: 174; Wischmann, 2002: 25), as people are faced with cumulative failure. Treatment for infertility can be psychologically addictive, because of an overwhelming personal goal to have a child. After unsuccessful cycles, people may demonstrate 'tunnel vision' (Reading, 1989: 111), continuing treatment with a 'gambler's' instinct (Fleming, 1994: 216; May, 1995: 236; Modell, 1989: 129). Being in infertility treatment is likened to being a 'junkie' hooked on drugs, being enticed to try one more time and requiring a detox program to stop (Fleming, 1994:219; Solomon, 1988:42). Treatment is very difficult to quit without regrets. As one woman said, "if I stopped, I wouldn't forgive myself" (Valerie). People can feel that continuing on the treadmill of infertility treatment is the only real choice if they truly want a child (Michie 37 & Cahn, 1997: 161). This mother of two, after 26 DI cycles, offered encouragement. "I just thought after like 16 times to get (our son), it might give other people incentive. I know if they said to me 'well look, there's one lady here that had 18 times' ... that after that many times it's not a dead loss, it can still work." Joan Anticipated decision regret "I was talking to (the nurse) one day and she said that I still had one free cycle there and she thought that perhaps if I didn't use it, I might regret it. .. So we did it and it obviously wasn't successful . But I am pleased that we did it, because I now feel more comfortable in sort of letting go of the whole process... I have real ly given it a fair shot, and perhaps done more than some people would do." Lois One significant motivator in continuing to try to have a child using infertility t reatment is anticipated decision regret (Tymstra, 1989), in which choice is influenced by not wanting to later regret not having tried a particular course of action (Bel l, 1982; Loomes & Sugden, 1982) . Under uncertainty, a path of 'least regret' is chosen (Heap, Holl is, Lyons, Sugden, & Weale, 1992:42). Reproductive technologies raise 'the fear of regret of the road not taken' ( Braverman, 1997:215). People worry about later reg retting a 'wrong ' decision (Warde, 1994), in not taking up an available option (Bombardieri, 1981; Sandelowski, Harris, & Holditch-Davis, 1989). They also worry about giving up too soon (Peoples & Ferguson, 1998:159). Eighty percent of women in one study (Tymstra, 1989) did not want to look back in years to come and feel negative about not having tried IVF. The effort of trying is what people have control over, rather than the actual outcome of the treatment, as this woman who tried IVF eleven times, said. " I just want to say when I give up that I've tried everything... That's my aim, to really give it one hundred percent and then say ' well look, I've got to face it, it's not going to work'." Maureen Anticipated decision regret can be applied to people returning to a previously tried treatment, or moving to a different treatment, with the hope that t his new treatment will be more successful (for example, moving 38 from DI to ICSI, or trying IVF with donor egg). Those who simultaneously have treatment and follow up domestic or overseas adoption are also likely to be influenced by anticipated decision regret, not wanting to miss an opportunity, as they try all possible options to building a family within a limited time frame. This sense of wanting to avoid regret in the future is a powerful motivator and is likely to sustain people in having more infertility treatment, such as this woman. "If I say now 'stuff it, I'm stopping .. . a couple of years later, I'll feel guilty that I didn't try ... the full length of trying. So I still want to try. If I would become pregnant and it go all right, I would be very pleased. And if it didn't go, then I would think 'well at least we tried and that's it'." Jan The fear of later regrets needs to be addressed before people decide to move on from infertility treatment (Peoples & Ferguson, 1998: 177). To avoid feeling regret in the future, it is important for people to feel satisfied that they have done their personal best to have a family. It is found that people are likely to feel better about stopping treatment, if they are satisfied with the effort they have put into trying (Vercollone, Moss, & Moss, 1997:120). Otherwise, a sense of failure and regret makes the decision to end treatment very hard to make (Read, 1995:86). What constitutes a 'reasonable course of treatment' (Gordon & Barrow, 2000: 504) is clearly subject to very personal definitions. People do not generally regret using the knowledge of medical science and knowing they have done everything they could to try and have a child (Daniluk, 2001a: 129; Daniluk, 2001c: 180; Hammarberg, Astbury, & Baker, 2001: 380; Tymstra, 1989: 207), talked about by several women in the study. "The way I felt about this last cycle, I dreaded it. I didn't want to do it and yet I knew I had to because it was the final one and if I hadn't done it, I would always wonder 'what if?"' Jade Conclusion To be able to understand people's infertility treatment choices, it is important to understand what infertility is, how common it is, and what meaning it holds for people within our society. Treatment for infertility is 39 rapidly developing. DI may hold less appeal for heterosexual couples who seek a fully genetic child through ICSI, but it is increasingly accessed by lesbian and single women, and continues to be a cheaper option for heterosexual couples with male infertility. Increasingly, IVF is being used with other techniques for all types of infertility, with greater success. These two treatments continue to be significant options for those medically and socially infertile. In modern western societies, the personal, very painful experience of infertility takes place within and is shaped by social structures like the family; norms like that of parenthood; and values such as children's preciousness and sense of future they bring. Further information about fertility statistics, the treatments and their success rates, adoption, access to infertility treatment in New Zealand, and pertinent ethical and legal issues are to be found in Appendices 14 to 18. The next chapter addresses the methods used in the study and introduces the participants. 40 CHAPTER 2 Infertility Treatment Decisions: Methods and Introductions "Once more a very pregnant pause, because these are very philosophical questions." Dillon At the start of the research, I was faced with designing a study that accessed people's most personal of thoughts and processes about their infertility treatment decisions - an area that for many is private, sensitive, and taken for granted. In order to encourage and respect participation, I needed to carefully think out the research methods and interviewing style. This chapter reviews the methods used in the study. This includes my personal involvement in the research topic; participant recru itment, research design and data organisation for both the preliminary and main studies; and the principles and protective mechanisms guiding the ethical issues of respecting the sensitive and private nature of the issues being investigated. The descriptive second part of the chapter briefly introduces the 56 participants in the preliminary and main studies. The personal is political: researcher as participant The topic of infertility decision-making was chosen because of my personal and professional interest with infertil ity, and the importance I attribute to people being active with their treatment decisions. Reflexivity is the process of critically reflecting on oneself as researcher (MacGibbon, 2002:42) . The research process has faci litated self-reflection and growth both for myself as researcher and influenced the focus of the study and the methodology utilised. It has held out both a mirror reflecting my own life experiences and a map of alternative paths to negotiate, making the present comprehensible and offering directions for the future. My values, personal experience, professional practice and appreciation of the literature as a researcher formed the structure from which the research questions and design emerged (Strauss & Corbin, 1990:36). 41 To enhance the credibility of research, the 'distance' between the researcher and the research needs to be explicit (Mays & Pope, 2000: 51). In partially identifying with participants, (called "conscious partiality", by Mies, 1983), an active, critical and reciprocal relationship between myself, as researcher, and the participants, as the researched, was created. Both become the change agent and the changed, the teacher and the student. I learned and was changed as a result of my involvement in the research process. As a feminist, it was important to break down barriers between researcher and the researched . As a participant in the 'culture of infertility', I shared experiences of the researched as an insider, rather than as purely a professional observer or 'other' (Wicks, 1998). In asking to be trusted to hear their stories and to be entrusted with the keeping and voicing of these stories, I felt there was "no intimacy without reciprocity" (Oakley, 1981:49). At the start of each first interview I briefly shared my personal experience with infertility. Rapport and trust (and possibly the zero attrition rate between the interviews) were clearly aided by participants knowing of my personal involvement with infertility, minimising differences in status, knowledge or power (Grbich, 1999:98), as this woman verbalised. "Dealing with someone who has had the sa