Reproductive Decision Making among Couples with HIV/AIDS in Taiwan

1. Reproductive Decision Making among Couples with HIV/AIDS in Taiwan Nai-Ying Ko, RN Ph.D. Department of Nursing National Cheng Kung University

2. Research Background

3. Global perspectives • Women of reproductive age constitute one of the fastest growing groups being diagnosed with HIV/AIDS. • By the end of 2002, 19.2 million women were living with HIV/AIDS • Eighty percent of women with HIV infection are of childbearing age • 2.5 million of the 200 million pregnant women each year are HIV positive

4. AIDS Epidemic in Taiwan • At the end of 2002, 4,373 cases with HIV/AIDS had been reported. • MSM and heterosexual contacts are two major routes of transmission • The male-to-female ratio of AIDS decreased from 41:1 in 1989 to 11:1 in 2002 • Over 56% of them are 20-39 years old • Over 80% of the 318 HIV positive women were infected through their male partners. • Free HAART treatment and health care

5. Significances of The Study • Few studies of reproductive health have included male participants. • The role that gender-based power relationships play in the process of reproductive decision-making has been neglected • Relatively few studies have explored how the societal, cultural, and professional institutions have constructed couples’ reproductive decisions. • Limited literature from Taiwan has addressed reproductive health issues of people with HIV/AIDS.

6. Purpose of The Study • The purpose of the proposed study is to explore the gender-based power relationships, and social and cultural influences on reproductive decision-making among heterosexual couples with HIV/AIDS in Taiwan.

7. Specific Aims 1. Describe reproductive health among couples with HIV/AIDS in the past year 2. Explore gender-based power relationshipsbetween intimate partners and explore their influence on making reproductive decisionsamong couples with HIV/AIDS in Taiwan. 3. Explore political, social and cultural perspectives on reproductive decisions of couples with HIV/AIDS in Taiwan society.

8. Methodology

9. Feminist Ethnography • Ethnography emphasizes interaction, and explores how the subject’s experiences are constituted in social context. • Visweswaran (1997) defined feminist ethnography as ethnography that foregrounds the question of social inequality vis-à-vis the lives of men, women, and children. • Gender and power are the central realm for feminist ethnographic analysis.

10. Critical Discourse Analysis • Critical discourse analysis sees discourse- language use in speech and writing- as a form of ‘social practice’. • Discourse as social practice implies a dialectical relationship between a particular discursive event and the situation(s), institution(s), and social structure(s) which frame it.(Fairclough & Wodak, 1997) • Action, context, power and ideology are the central aims for critical discourse analysis.

11. Selecting fields and settings • The proposed study was conducted in Southern Taiwan, including the two metropolitan cities Tainan and Kaohsiung. • Research settings include the participants home, governmental agencies, AIDS clinics, and NGOs

12. Participants • Fourteen heterosexual couples with HIV/AIDS • at least one partner is HIV positive • female partner is between 20 and 45 of age • both of partners have been informed of each other’s HIV status by their healthcare providers. • were confronting or having confronted reproductive decisions during HIV disease trajectory • be able to communicate comfortably in Mandarin, Taiwanese dialect, or English.

13. Profiles of Couples with HIV • Age: Male: 26-47 ; Female: 24-45 (3 foreign brides) • Education: all above junior high school • Marriage year: six months to 20 years • HIV status : 7 HIV concordant and 7 HIV discordant couples (All male participants are HIV positive) • Time of HIV+: one month to eleven years • Children: 7 couples with children (5 month to 20 years old)

14. Profiles of Health Professionals • Eleven healthcare and social services providers, and policy makers • 4 physicians, 1 head nurse, 1 social worker, 3 AIDS NGO representatives • 2 governmental representatives from Taiwan CDC • Ages ranged from 26 to 45 years (mean = 32 years). • The working years for caring PLWHA ranged from 4 to 15 years (mean = 10.6 years).

15. Ethnographic Data Collection Recruitment • I (e)mailed a written explanation of this study to healthcare/service providers and wait for their initiative to contact me. • I asked healthcare/service providers to refer eligible couples to me. Obtained written Informed consent Strategies for data collection • Interview (individual and couple), participant observations, and examination of available related documents

16. Data Analysis • Ethnographic analysis procedures • Reading thoughtfully, coding and memoing, categorizing and sorting for patterns, constructing storytelling and applying theories. (Emerson, Fretz, & Shaw, 1995; D. Fetterman, 1998; Hammersley & Atkinson, 1995) • Critical discourse analysis followed the outlined by Fairlough (1992, 2001) • Description, interpretation and explanation • The rigor of this study was examined using six criteria offered by Muecke (1994).

17. Findings

18. Reproductive Health of HIV Couples • History of pregnancy & abortion • 8 couples were parents or parents-to-be (1-4 children) • 5 female partners never become pregnant • 4 female partners had received abortions • Family Planning • Desired number of children: one boy and one girl • Contraception: oral pills, IDU, rhythm and withdrawal methods, vasectomy and condom • Condom: inconsistently use of condoms among four of nine sexual active couples • Sexual behaviors and relationships • 9 couples are sexually active, secrecy of MSM

19. The stage of Family Development

20. Drawing an Picture of Ideal Family • Reasoning for having children • Performance of filial piety • A goal to pursue within the context of an intimate relationship • HIV impacts on childbearing plan • The stage of family development • Couples’ HIV status and health conditions • Childbearing in not couple’s own affair • Couples’ aged parents, either maternal or fatherly family, concerned childbearing issues most • Additional pressures came from couples’ neighbors, colleagues or closed friends.

21. Reproductive Decisions Making Process • Decisions of planning or continuing childbearing • Encountering medical systems • Searching for information • Weighting the risk-benefit of childbearing

22. Decisions of Childbearing Plan • Gendered based power relationship is exercised in the dynamics of decision-making • Only two couple discussed their childbearing plan with each others • Husbands have the final word • The considerations between two partners were different • Men seemed to have a plan in minds and their decisions remained static • Women’s decisions fluctuated over time

23. Discourses of Health Professionals • Three prevailing discourses on the childbearing issues regarding couples with HIV/AIDS • pro-children • conditional pro-choice • pro-rights

24. Encountering Medical Systems • Once entering the medical systems, couples’ reproductive decisions were strongly influenced by health authority • The timing of diagnosis of HIV is a critical point to recognize couples’ reproductive health issues • Reproductive health problems was easily to be ignored • Couples’HIV Status

25. Searching for Information • Children’s health was the primarily concern for all couples with HIV • Information needs • effects of HIV infection and antiretroviral therapy on their pregnancies, labor, delivery and baby’s well-being • possible options regarding childbearing plans, and about likelihood of different outcomes among different options • Information sources • healthcare providers, family members who knew their HIV status, websites, newspaper, and reference books for parents-to-be

26. Weighting the risk-benefit • Estimation of mother-to-child transmission • Psychosocial readiness for continuing childbearing plan • Perceived supports from family members • Perceived supports from medical systems

27. Conclusion

28. Confucian influence of filial piety and son preference has continued to transcend couples’ reproductive decision-making • Men are the primary decision-makers about family planning, contraceptive use, and sexual activity. • Couples’ reproductive health was easily to be neglected unless they were diagnosed with HIV during pregnancy • HIV infection is not the sole determinate of couples’ reproductive decisions

29. Study Limitations • A small sample size and a selected sample • The validity of qualitative analysis • The selective retention of information • Memory retention after decisions had been made

30. Future Implications • Clinical practice • Health policy and recommendations • Infertility treatment and services for HIV discordant couples • Comprehensive and gender-sensitive care plan • Research • The feasibility and safety of conducting ART • Couples’ reproductive health and the services they had received • Health professionals’ attitudes toward reproduction health and services they had provided • Factors influencing healthcare providers’ knowledge, attitudes, and practices

31. Comments and suggestions are highly appreciated