Reconceiving the Spoiled Female Identity: Childbearing and Motherhood among Women with. Hepatitis C

Transcription

1 Reconceiving the Spoiled Female Identity: Childbearing and Motherhood among Women with Hepatitis C Hayley Clare Thetford A thesis submitted for the degree of Doctor of Philosophy of the Australian National University Demography and Sociology Program Research School of Social Sciences Australian National University, Canberra ACT 0200 August 2004

2 Declaration of Originality I hereby declare that this submission is my work and that, to the best of my knowledge and belief, it contains no material previously published or written by another person, no material which to a substantial extent has been accepted for the award of any other degree or diploma of a university or other institute of higher learning, except where due acknowledgement is made in the text. Signed H. Clare Thetford

3 Acknowledgements This research was made possible through the award of The Commonwealth Department of Education, Science and Training International Postgraduate Research Scholarship (tuition fees), and the Australian National University PhD Scholarship (stipend). I would like to express my sincere thanks to the people mentioned below for the great deal of support and assistance I received in completing this thesis. Professor Peter McDonald, for his continuous support and supervision from the beginning to end of the entire process. Professor Sandy Gifford, for her enlightening input and her ability to bring some order to my sometimes convoluted ideas. Dr. Jan Copeland, for advice and comments throughout, and for making it possible for me to be based at the National Drug and Alcohol Research Centre (NDARC) in Sydney. To the many staff at NDARC who shared their experience and knowledge of working in the drug and alcohol field. In particular, I would like to thank those people who always managed to find work for me, which allowed me to gain many experiences and perspectives of the issues surrounding injecting drug use. NDARC has been a wonderfully nurturing and exciting place in which to work. To my room mates at NDARC, Lucy Burns, Carolyn Day, Heather Proudfoot, and Laura Vogl, thank you for the conversation, advice and support. I am very sad to leave behind such a friendly working environment. Lucy Burns, Carolyn Day, Cath Lamb and Laura Vogl spent many hours reading draft versions of this thesis and provided insightful comments. Special thanks must go to Carolyn Day, without whom the process of producing this thesis would have been considerably more painful. Carolyn selflessly and enthusiastically provided amongst other things, support, advice, knowledge, and opportunities to work on several different research projects. Medical staff at the Royal Prince Alfred Hospital, in Camperdown, assisted not only with recruitment of participants, but also in obtaining approval from the Human Research Ethics Committee. Thank you to Belinda Brodrick at the Women and Babies unit at the Royal Prince Alfred Hospital, for allowing me to spend many hours in the department recruiting participants. The Hepatitis C Council NSW provided assistance in framing the research question, and then provided practical help in recruiting participants through the Hep C Review. To the women who participated in this study, thank you for taking the time to share with me your personal and often distressing experiences. In representing you, I hope I have done each of you justice. To my friends here in Sydney and at home in the UK, thank you for listening to my many dilemmas and always being there. To my partner Darren Brady, thank you for helping to keep things in perspective and for all your support for such a long time. To my family, thank you for all your endless love and encouragement during all of the ups and downs. Despite being on the other side of the world you were only ever a phone call away and always assured me that everything would be okay.

4 Abstract This thesis explores the impact of hepatitis C on women s childbearing decisions and experiences of motherhood. A partial grounded theory approach was used, in which 34 women living with hepatitis C participated in semi-structured interviews to determine the direct and indirect effects of hepatitis C on their own personal decisions regarding childbearing and to describe their lived experiences of motherhood. The qualitative interview data were analysed thematically, in which common themes were identified and explored. Three key areas are explored: women s social experience of hepatitis C; hepatitis C and childbearing decisions; and the meaning of motherhood for women with hepatitis C. The interviews revealed that living with hepatitis C had direct effects on the childbearing decisions of women. The direct effects of the virus which impacted on women s childbearing decisions included poor physical and emotional hepatitis C related health, the perceived risk of vertical transmission of hepatitis C, concerns their future hepatitis C related health might impact upon their mothering abilities, and childbearing can conflict with treatment for hepatitis C. However, of greater importance to these women, appeared to be the indirect effects of living with a virus which is so highly stigmatised within our society. In particular, hepatitis C is closely associated with injecting drug use, which means these women are often assumed to possess the stereotypical characteristics associated with injecting drug users. As a result, they experience widespread medical discrimination and social rejection. Hepatitis C also impacts indirectly upon a wide range of factors that most women in contemporary society take into consideration in their childbearing decisions, for example, available social support, financial security and age.

5 The experiences reported by these women are discussed in terms of their concordance or discord with prevailing theories of deviance, stigma and the social construction of motherhood. The interview data, considered in light of such theories reveal that possibly the greatest impact that hepatitis C can have upon women is to prevent them from achieving a legitimate adult female status through childbearing and becoming a good mother. The implications of these findings are discussed in terms of public health and social policy.

6 Table of Contents Declaration of originality...ii Acknowledgements...iii Abstract...iv List of Tables and Figures...x List of appendices...xi Glossary...xii Section 1: Introduction and Literature...1 Chapter 1: Childbearing and Motherhood among Women with Hepatitis C...2 Hepatitis C... 3 Natural history of hepatitis C in children... 5 Routes of infection... 6 The epidemiology of hepatitis C...7 Living with hepatitis C Treating hepatitis C Aims of the thesis Significance of the research aims Existing studies on the social aspects of hepatitis C The evolution of the research question Chapter 2: Women with Hepatitis C...19 Sex ratio of infections Characteristics of women with chronic hepatitis C Gender specific issues of hepatitis C The risk of vertical transmission of hepatitis C Risk of transmission via breastfeeding Mode of delivery and risk of vertical transmission Sexual transmission of hepatitis C Hormonal and menstrual irregularities and birth control Natural history of hepatitis C in women Quality of life of women living with chronic hepatitis C Summary: Women and hepatitis C Chapter 3: Gender and Injecting Drug Use...37 Drug treatment Summary: Gender and injecting drug use Chapter 4: Deviance, Stigma and Women Living with Hepatitis C...45 Deviance theory...47 Primary and secondary deviance...51 Hepatitis C and secondary deviance...52 The falsely accused...53 Deviant labels become the master status...54 Hepatitis C and auxiliary traits...55

7 Auxiliary traits of women with hepatitis C...56 Living a double life...57 Stigma...58 Illness as deviance...61 Medicalisation of deviance...63 The right to the sick role...66 The sick role and stigmatised chronic diseases...67 Summary: Deviance, stigma and women with hepatitis C...67 Chapter 5: The Social Construction of Motherhood and Women with Hepatitis C...71 The social construction of childbearing and motherhood The social construction of motherhood Parenthood Ideologies of motherhood Summary: the ideology of motherhood Superwoman Desire for children and childlessness Intentional childlessness The social construction of motherhood and women with hepatitis C Suitability for motherhood Childlessness If, when and how many? Super-mum Dealing with professionals Summary: The social construction of motherhood and women with hepatitis C Section 2: Research Methods...93 Chapter 6: Research Design and Methods...94 Methodological approach Grounded theory Research setting: Context The research setting and establishing rapport Research setting: Position of the researcher Interviewing Analysis and interpretation Methods of sampling Selection criteria Methods of recruitment Methods of data collection Methods of analysis Rigour Ethical and logistical issues Summary: Research design and methods

8 Section 3: Findings Chapter 7: Sample Characteristics Age Ethnicity Country of birth Occupation Employment Income Housing Education levels Suburb of residence Injecting drug use Methadone maintenance treatment Partner Existing children Source of hepatitis c infection Duration of infection and time since diagnosis Sample overview Chapter 8: Women s Social Experiences of Living with Hepatitis C Stigma and discrimination Auxiliary traits Stigma associated with hepatitis C is worse for women than men Notions of pollution Consequences of stigmatisation Real and perceived discrimination Being treated like a leper Wrongly applied deviant labels Disclosure of hepatitis C Effects of disclosure Hepatitis C and social relationships Diagnosis of hepatitis C Prognosis The effect of hepatitis C on drug use Hepatitis C related health care Barriers to hepatitis C related health care Segmented health care Medicalisation of women with hepatitis C Resisting the medicalisation of hepatitis C Hepatitis C and self perception Lifestyle changes Health and morality Hepatitis C and social roles Hepatitis C and social roles Summary: Women s social experiences of living with hepatitis C Chapter 9: Hepatitis C and Childbearing Decisions Direct influences of hepatitis C on childbearing Indirect influences of hepatitis C on childbearing Vertical transmission of hepatitis C Lack of knowledge and understanding of the risk of vertical transmission Perception of risk of vertical transmission when diagnosed during pregnancy Reducing the risk of transmission Misleading and inadequate information from doctors

9 What is at risk? Blame and guilt Breastfeeding Summary: The risk of vertical transmission of hepatitis C affects childbearing decisions Hepatitis C related physical and emotional health impacts on childbearing decisions Summary: Physical and emotional effects of hepatitis C affect childbearing decisions Childbearing can conflict with treatment for hepatitis C Summary: hepatitis C treatments can conflict with childbearing Age and hepatitis C affect childbearing decisions Indirect effects of hepatitis C on childbearing decisions: Social support Support from partners Formal support Support from organisations Formal support Support from organisations Summary: Women with hepatitis C have lower levels of social support and this affects their childbearing decisions Injecting drug use affects childbearing decisions among women with hepatitis C Existing children and hepatitis C related childbearing decisions Summary: Hepatitis C and injecting drug use impact on childbearing decisions Chapter 10: The Meaning of Motherhood for Women with Hepatitis C The desire to be a mother Choosing to be childless How does having hepatitis C affect mothering? Supports Formal supports Informal supports Infection control Managing the physical symptoms of hepatitis C and motherhood Employment Why are women with hepatitis C considered to be inadequate or bad mothers? The values involved in good mothering Having children removed from custody Summary: The meaning of motherhood for women living with hepatitis C Section 4: Discussion and Conclusions Chapter 11: Discussion and Conclusions Stigmatisation The sick role Medicalisation Mothering and the female identity Conclusions Policy recommendations and future research directions Significance of the findings Limitations of the thesis and future research directions References References Appendices