Deadly Dilemmas in Women's and Girls’ Health: A Model for Advocacy and Positive Change

1. Deadly Dilemmas in Women's and Girls’ Health: A Model for Advocacy and Positive Change Maureen Kelley, Ph.D. Bioethics Division, Dept of Pediatrics

2. “Women Hold up Half the Sky”….and much more • Empowering women: Valuable as an end in itself as a basic human right. • And as a powerful determinant of women’s health, children’s health, and the health of families, and communities.

3. Integrating Ethics & Global/Community Health Three Powerful Ideas: • We need both the View from Above & The View from Below to think beyond isolated health interventions, toward sustainable solutions. • Ethical Dilemmas are a Symptom of Deeper Problems: Diagnosing dilemmas is part of the Solution • Solutions need to be approached with cultural humility, and rooted in women’s empowerment, grown within communities and across generations.

4. Behind each number is a face and a story. Every voice is unique and quietly powerful. The View from Below…

5. The story of Jane • 16 yr girl admitted to rural district hospital in Eastern Africa w/ abdominal pain. Plain x-ray shows needle in pelvic region. • Pregnancy test (+) // HIV test (+) • Life threatening attempted self abortion • Mother does not know, but is eventually told • She is daughter’s only source of support • Both daughter and mother fear father/husband • Fear community reaction • Mother and daughter choose to keep the attempted abortion secret, needle is removed and pregnancy still viable. • She continues on with pregnancy and will be counseled on a PMTCT strategy and HIV treatment for herself.

6. What should be done for Jane and other girls and women like her?

7. Diagnosing terrible trade-offs is the first step in identifying barriers to lasting solutions. Moral dilemmas are often a symptom of deeper problems…

8. Dilemmas Fueled by Poverty & Gender Inequalities

9. Dilemmas of Poverty& Geography • A bus ticket to the hospital in Lusaka or Kampala vs. Feeding other siblings for the next five months.

10. Among the highest causes of maternal death in childbirth could be prevented with better access to safe, facility births, with skilled birth attendants. • In Lusaka, most women who chose to give birth at home did so because they could hire a midwife’s services with small food items. (Hazemba, 2009) • When complications arise, they are too far from a facility.

11. Value trade-offs in reproductive choice birth spacing and contraception financial trade-offs for family and siblings nutrition for self vs. family during pregnancy occupational stress vs. personal health

12. How do you make decisions at the margins when the margins are a way of life?We simply can’t accept the margins….

13. Counting requires being Counted. The View from Above…

14. Deadly pregnancies • Approximately 1000 women die every day due to complications of pregnancy and child birth • severe bleeding, infections, hypertensive disorders, and unsafe abortions • For every woman who dies in childbirth, 20 more will suffer injury, infection, or disease – approximately 10 million women each year. Sources: WHO, 2010; Murray et al., 2010

15. Maternal & Neonatal Deaths – Why? Largely preventable Goldenberg et al., Stillbirths: The Vision for 2020, Lancet 2011.

16. Preventable determinants of morbidity & mortality for women and girls • Reproductive health problems comprise the leading cause of death and disability for women globally. • Skewed prevalence of HIV in girls and young women, even in countries where rates of HIV have decreased (such as Brazil). • Exposure to STDS (e.g., HPV) higher among girls living in poverty, and ethnic minorities. • An epidemic of domestic violence: From female feticide, to genital cutting, trafficking of girls and women, child marriage, honor killings, physical abuse. (Sources: Shaw, 2006; Nour 2009)

17. The importance of social determinants of health. Looking upstream is critical for identifying root problems and sustainable solutions Example: Girl’s Education The View from Above…

18. Some sobering facts • Girls that do not finish secondary education are more likely to have an earlier age of sexual initiation, engage in risky sexual behavior, and consequentially be at greater risk of dying from pregnancy-related causes. • Girls in school were more likely to have heard of sexually transmitted diseases or infections than girls not in school. Girls in school were also more likely than girls not in school to boil water before drinking • (Rees et al., Educating for the future: adolescent girls' health and education in West Bengal, India. Int J Adolesc Med Health. 2012)

19. Domestic Violence • The higher the education level of the women the less the likelihood of experiencing physical intimate partner violence. • (Tumwesigye et al. Problem drinking and physical intimate partner violence against women. BMC Public Health 2012, 12:399 from the Women’s dataset in the Uganda Demographic and Health Survey of 2006)

20. Empowered Women are Healthier Mothers • Social and political marginalization impacts demand for prenatal and antenatal interventions. • Literacy, education, and empowerment known to improve access to prenatal, delivery and postnatal care. Wise P. Transforming preconceptional, prenatal, and interconceptional care into a comprehensive commitment to women’s health. Womens Health Issues 2008.

21. Maternal Prematurity and stillbirth Child Fetal Newborn Connected Outcomes Require an Interdisciplinary Approach

22. Women’s Education and Child Survival • Increase in the education of women has been shown to decrease child deaths under five. • (Gakidou E, Cowling K, Lozano R, Murray CJL. Increased educational attainment and its impact on child mortality in 175 countries between 1970 and 2009: a systematic analysis. Lancet 2010.) • Two decades of research shows that children benefit when their mother’s status is raised. • (Chen & Li, 2009; Apodaca,2008; Heaton, Forste, Hoffmann, & Flake, 2005; Gokhale et al., 2004; Caldwell & Caldwell, 1991; Cleland & Ginneken,1988; Hobcraft, 1993; Caldwell & McDonald, 1982.)

23. Under 5 Deaths, Where? Worldmapper, Age of Death. WHO Global Burden of Disease (GBD).

24. Illiterate women – where? • In South American and Western European territories men and women have very similar levels of literacy. • Elsewhere, particularly in India, China, Pakistan and the Islamic Republic of Iran, there are much larger numbers of women who cannot read or write compared to men. Source: Worldmapper, United Nations. 2005. The Millennium Development Goals Report, 2005 . New York: United Nations.

25. Girls not in Primary School • Largest absolute gap between the enrollment of girls and boys in primary education is India. • In India there are about 8 million fewer girls than boys enrolled in the first five years of education, ten times the number in any other territory. • Other territories with significant gaps: Yemen, Chad, Benin and Niger. • Source: Worldmapper, United Nations. 2005. The Millennium Development Goals Report, 2005 . New York: United Nations.

26. How do we help achieve sustainable solutions?

27. 1. Building Women’s Social Capital • Social capital - high levels of participation in local community groups - is thought to be an important determinant of health • Example: Social Capital and Women's Reduced Vulnerability to HIV infection in Rural Zimbabwe (1998-2003) • Individual women in community groups had lower HIV incidence and more extensive behavior change, even after controlling for confounding factors. • (Gregson et al. Popul Dev Rev. 2011).

28. 2. Helping women to organize themselves…

29. 3. The power of local movements

30. 4. The power of women across generations

31. 5. Educating boys and men:

32. 6. Political Empowerment

33. What is our role? To Bear Witness and Effect Change through Partnerships

34. What’s upstream? • Social determinants: • Illiteracy • Poverty • Lack of political power • Lack of autonomy in reproductive health

35. What’s downstream? • Unintended Effects: • Stigma or abandonment • Physical harm • Reluctance to seek care • Increased risk of mortality/disability • Breach of trust • Patient • Hospital • Community

36. Solutions need to be approached with cultural humility, and rooted in women’s empowerment, grown within communities and across generations. Cultural Humility & Local Empowerment

37. Navigating cultural and social norms without legal protections can also be hazardous to women’s health. • Empowering women can also expose them to personal and social risk.

38. Example of well-meaning, harmful impact: • Reporting pregnancy complications and STDs carry significant costs for women. • Example: Partner disclosure of HIV status and PMTCT in ANC setting (Hardon et al) • Women “Captured” in ANC. Unintended consequence: false discordance. • can lead to stigma, abuse by husband, and abandonment. Photo Credit: Richard Lord

39. YOU ARE HERE What can I do now? Upstream Downstream Impact Mitigating impact for this patient Opportunities for more systematic change • Determinants of Health • This patient’s story • Social, cultural, and political context What is your sphere of influence to effect lasting change? How can you partner with others to expand it?

40. Helping girls believe on the inside…