Abstract
This study aimed at exploring stigmatization and discrimination experiences of women living with obstetric fistula (WLOF) in the Northern Region of Ghana. Fifty-five women were identified purposively, and data were collected through focus group discussions and face-to-face in-depth interviews using a semi-structured interview guide. The focus group discussion and interviews were audio-recorded, transcribed, and analyzed to identify emerging themes that addressed the objectives of the study. The findings indicated that the WLOF had different views about that condition. In addition, it was found that the women experienced enacted, anticipated, and internalized stigma. Evidence showed that many of the participants responded to their experiences by concealing their condition and living in isolation, which negatively affected their psychosocial wellbeing. The findings suggest the need for awareness creation about obstetric fistula, as well as psychosocial interventions that would enhance the dignity, wellbeing, along with the rights of WLOF.
Similar content being viewed by others
References
Adler-Nissen, R. (2014). Stigma management in international relations: Transgressive identities, norms, and order in international society. International Organization, 68(1), 143–176.
Ahmed, S., & Holtz, S. A. (2007). Social and economic consequences of obstetric fistula: Life changed forever? International Journal of Gynecology & Obstetrics, 99(1), 10–15.
Bashah, D. T., Worku, A. G., & Mengistu, M. Y. (2018). Consequences of obstetric fistula in sub Sahara African countries, from patients’ perspective: A systematic review of qualitative studies. BMC Women’s Health, 18. https://doi.org/10.1186/s12905-019-0781-7
Benoit, C., Jansson, S. M., Smith, M., & Flagg, J. (2018). Prostitution stigma and its effect on the working conditions, personal lives, and health of sex workers. The Journal of Sex Research, 55(4–5), 457–471.
Blum, L. S. (2012). Living with obstetric fistula: Qualitative research findings from Bangladesh and the Democratic Republic of Congo. Fistula Care. http://www.fistulacare.org/pages/pdf/technical-briefs/qualitative_fistula_brief_final_web8.13.2012.pdf
Bowen, G. A. (2008). Naturalistic inquiry and the saturation concept: A research note. Qualitative Research, 8(1), 137–152.
Carey, M. A., & Asbury, J. E. (2016). Focus group research. Routledge.
Changole, J., Kafulafula, U., Sundby, J., & Thorsen, V. (2019). Community perceptions of obstetric fistula in Malawi. Culture, Health & Sexuality, 21(5), 605–617.
Changole, J., Thorsen, V. C., & Kafulafula, U. (2017). “I am a person but I am not a person”: Experiences of women living with obstetric fistula in the central region of Malawi. BMC Pregnancy Childbirth, 17, 433. https://doi.org/10.1186/s12884-017-1604-1
Chaudoir, S. R., Earnshaw, V. A., & Andel, S. (2013). “Discredited” versus “discreditable”: Understanding how shared and unique stigma mechanisms affect psychological and physical health disparities. Basic and Applied Social Psychology, 35(1), 75–87.
Cook, R. J., & Dickens, B. M. (2002). Human rights to safe motherhood. International Journal of Gynecology & Obstetrics, 76(2), 225–231.
Cook, R. J., Dickens, B. M., & Fathalla, M. F. (2003). Reproductive health and human rights: Integrating medicine, ethics, and law. Clarendon Press.
Cook, R. J., Dickens, B. M., & Syed, S. (2004). Obstetric fistula: The challenge to human rights. International Journal of Gynecology & Obstetrics, 87(1), 72–77.
Creswell, J. W. (2003). Research design, qualitative, quantitative and mixed method approaches (2nd ed.). Sage Publications.
Creswell, J. W. (2013). Qualitative inquiry and research design: Choosing among five approaches. Sage Publications.
Creswell, J. W. (2015). 30 essential skills for the qualitative researcher. Sage Publications.
Dako-Gyeke, M., Dako-Gyeke, P., & Asampong, E. (2015). Experiences of stigmatization and discrimination in accessing health services: Voices of persons living with HIV in Ghana. Social Work in Health Care, 54(3), 269–285.
Dako-Gyeke, M., & Donkor, M. D. (2018). Experiences and perspectives of stigmatization and discrimination against people with epilepsy in Accra, Ghana. Epilepsy and Behavior, 87, 101–107.
Dako-Gyeke, M., & Kodom, R. B. (2017). Deportation and reintegration: Exploring challenges faced by deportee residents in the Nkoranza Municipality, Ghana. Journal of International Migration and Integration, 18(4), 1083–1103.
Deacon, H., Stephney, I., & Prosalendis, S. (2005). Understanding HIV/AIDS stigma: A theoretical and methodological analysis. HSRC press.
Debas, H. T., Donkor, P., Gawande, A., Jamison, D. T., Kruk, M. E., & Mock, C. N. (Eds). (2015). Disease control priorities: Essential surgery (3rd ed., Vol. 1). World Bank.
Diop, N. J., Moneti, M. F., Jubero, M. M., & Legesse, B. (2015). UNICEF-UNFPA joint programme on female genital mutilation/cutting: Accelerating change. UNICEF.
Earnshaw, V. A., & Chaudoir, S. R. (2009). From conceptualizing to measuring HIV stigma: A review of HIV stigma mechanism measures. AIDS Behavior, 13(6), 1160–1177.
El Ayadi, A. M., Barageine, J. K., Miller, S., Byamugisha, J., Nalubwama, H., Obore, S., et al. (2019). Women’s experiences of fistula-related stigma in Uganda: A conceptual framework to inform stigma-reduction interventions. Culture, Health & Sexuality, 22(3), 352–367.
Fife, B. L., & Wright, E. R. (2000). The dimensionality of stigma: A comparison of its impact on the self of people with HIV/AIDS and cancer. Journal of Health and Social Behavior, 41(1), 50–67.
Gatwiri, G., & Fraser, H. (2017). Putting vaginal fistulas on the international social work map: A critical perspective. International Social Work, 60(4), 1039–1050.
Gebremedhin, S., & Asefa, A. (2019). Treatment-seeking for vaginal fistula in sub-Saharan Africa. PLoS One 14(11), e0216763.
Gebresilase, Y. T. (2014). A qualitative study of the experience of obstetric fistula survivors in Addis Ababa, Ethiopia. International Journal of Women’s Health, 6, 1033–1043.
Ghana Health Service. (2015). Report on the assessment of obstetric fistula in Ghana. http://ghana.unfpa.org/sites/default/files/pub-pdf/Report%20on%20Fistula%20Report%20Burden%20in%20Ghana_Final_1_1_compressed.pdf
Goffman, E. (1963). Stigma: Notes on the management of spoiled identity. New York: Simon & Schuster.
International Continence Society. (2019). Obstetric fistula in the develo** world: An introduction. https://www.ics.org/committees/develo**world/publicawareness/obstetricfistulaanintroduction
International Federation of Social Workers (2014). Global definition of social work. http://ifsw.org/get-involved/globaldefinition-of-social-work
Kabayambi, J., Barageine, J. K., Matovu, J. K., Beyeza, J., Ekirapa, E., & Wanyenze, R. K. (2014). Living with obstetric fistula: Perceived causes, challenges and co** strategies among women attending the fistula clinic at Mulago hospital. Uganda. International Journal of Tropical Disease & Health, 4(3), 352–361.
Kasamba, N., Kaye, D. K., & Mbalinda, S. N. (2013). Community awareness about risk factors, presentation and prevention and obstetric fistula in Nabitovu village, Iganga District, Uganda. BMC Pregnancy and Childbirth, 13(1), 1–10.
Kavai, M. M., Chepchirchir, A., & Kayugira, R. (2010). Women’s knowledge of vesico vaginal fistula in Kenya. African Journal of Midwifery and Women’s Health, 4(4), 177–181.
Khisa, A. M., & Nyamongo, I. K. (2011). What factors contribute to obstetric fistulae formation in rural Kenya? African Journal of Midwifery and Women’s Health, 5(2), 95–100.
Kimani, Z. M., Ogutu, O., & Kibe, A. (2014). The prevalence and impact of obstetric fistula on women of Kaptembwa-Nakuru, Kenya. International Journal of Applied Science and Technology, 4(3), 273–287.
Lambert, S. D., & Loiselle, C. G. (2008). Combining individual interviews and focus groups to enhance data richness. Journal of Advanced Nursing, 62(2), 228–237.
Lim, K. S., & Tan, C. T. (2014). Epilepsy and stigma in Asia: The meaning and impact of stigma. Neurol Asia, 19(1), 1–10.
Lincoln, Y. S., & Guba, E. G. (1985). Naturalistic inquiry. Sage Publications.
Link, B. G. (1987). Understanding labeling effects in the area of mental disorders: An assessment of the effects of expectations of rejection. American Sociological Review, 52(1), 96–112.
Link, B. G., & Phelan, J. C. (2001). Conceptualizing stigma. Annual Review of Sociology, 27(1), 363–385.
MacRae, H. (1999). Managing courtesy stigma: The case of Alzheimer’s disease. Sociology of Health & Illness, 21(1), 54–70.
Maheu-Giroux, M., Filippi, V., Samadoulougou, S., Castro, M. C., Maulet, N., Meda, N., & Kirakoya-Samadoulougou, F. (2015). Prevalence of symptoms of vaginal fistula in 19 sub-Saharan Africa countries: A meta-analysis of national household survey data. The Lancet Global Health, 3(5), 271–278.
Mantey, R., Kotoh, A. M., Barry, M., & Redington, W. (2020). Women’s experiences of living with obstetric fistula in Ghana–time for the establishment of a fistula centre of excellence. Midwifery, 82, 1–7.
Mapp, S., McPherson, J., Androff, D., & Gatenio Gabel, S. (2019). Social work is a human rights profession. Social Work, 64(3), 259–269.
Markowitz, F. E. (1998). The effects of stigma on the psychological wellbeing and life satisfaction of people with mental illness. Journal of Health and Social Behavior, 39(4), 335–347.
Maxfield, M. G., & Babbie, E. R. (2011). Basics of research methods for criminal justice and criminology. Cengage Learning.
Maxwell, J. A. (2005). Qualitative research design: An interpretive approach. Sage Publications.
Miles, M. B., & Huberman, A. M. (1994). Qualitative data analysis: An expanded sourcebook. Sage Publications.
Miles, M. B., Huberman, A. M., & Saldaña, J. (2014). Qualitative data analysis: A methods sourcebook (3rd ed.). SAGE.
Mohamed, A. A., Ilesanmi, A. O., & Dairo, M. D. (2018). The experience of women with obstetric fistula following corrective surgery: A qualitative study in Benadir and Mudug regions, Somalia. Obstetrics and Gynecology, 1–10. https://doi.org/10.1155/2018/5250843
Morris, A. (2015) A practical introduction to in-depth interviewing. Sage Publications.
Moxley, D. P., Washington, O. G. M., & Crystal, J. (2015). The relevance of four narrative themes for understanding vulnerability among homeless older African-American women. Practice, 27(2), 113–133.
Mwini-Nyaledzigbor, P. P., Agana, A. A., & Pilkington, F. B. (2013). Lived experiences of Ghanaian women with obstetric fistula. Health Care for Women International, 34(6), 440–460.
Norton, N. J. (2007). Impact of fecal and urinary incontinence on health consumers: Barriers on diagnosis and treatment – A patient perspective. In State of the science conference on prevention of fecal and urinary incontinence in adults. National Institute of Health.
Noyori-Corbett, C., & Moxley, D. (2016). Inequality of women as a factor influencing migration from countries of origin to the United States and its implications for understanding human trafficking. International Social Work, 59(6), 890–903.
Ojilere, A., & Saleh, M. M. (2019). Violation of dignity and life: Challenges and prospects for women and girls with albinism in sub-Saharan Africa. Journal of Human Rights and Social Work, 4(3), 147–155.
Quinn, D. M., & Earnshaw, V. A. (2013). Concealable stigmatized identities and psychological well-being. Social and Personal Psychology Compass, 7(1), 40–51.
Rahman, M. S. (2017). The advantages and disadvantages of using qualitative and quantitative approaches and methods in language “testing and assessment” research: A literature review. Journal of Education and Learning, 6(1), 102–112.
Sargeant, J. (2012). Qualitative research part II: Participants, analysis, and quality assurance. Journal of Graduate Medical Education, 4(1), 1–3.
Saunders, B., Sim, J., Kingstone, T., Baker, S., Waterfield, J., Bartlam, B., Burroughs, H., & **ks, C. (2018). Saturation in qualitative research: Exploring its conceptualization and operationalization. Quality & Quantity, 52(4), 1893–1907.
Scambler, G., & Hopkins, A. (1986). Being epileptic: Coming to terms with stigma. Sociology of Health and Illness, 8(1), 26–43.
Steen, J. A. (2021). Human rights in field education: Key challenges and ways forward. Journal of Human Rights and Social Work, 6(1), 1–3.
Stuenkel, D. L., & Wong, V. K. (2013). Stigma. In I. M. Lubkin, & P. D. Larsen (Eds.), Chronic illness: Impact and intervention (8th ed., pp. 47–74). Jones and Bartlett.
Turan, B., Hatcher, A. M., Weiser, S. D., Johnson, M. O., Rice, W. S., & Turan, J. M. (2017). Framing mechanisms linking HIV-related stigma, adherence to treatment, and health outcomes. American Journal of Public Health, 107(6), 863–869.
UN General Assembly. (1979). Convention on the elimination of all forms of discrimination against women. United Nations, Treaty Series, 1249, 13. Available at: https://www.refworld.org/docid/3ae6b3970.html
United Nations Population Fund. (2019). Obstetric fistula: Overview. https://www.unfpa.org/obstetric-fistula
USAID. (2012). Living with obstetric fistula: Qualitative research findings from Bangladesh and the Democratic Republic of Congo. https://www.fistulacare.org/wp-fcp/wp-content/uploads/pdf/technical-briefs/qualitative_fistula_brief_final_web8.13.2012.pdf
Varas-Díaz, N., Neilands, T. B., Rivera, S. M., & Betancourt, E. (2010). Religion and HIV/AIDS stigma: Implications for health professionals in Puerto Rico. Global Public Health, 25(3), 295–312.
Wahab, E. O., Odunsi, S. O., & Ajiboye, O. E. (2012). Causes and consequences of rapid erosion of cultural values in a traditional African Society. Journal of Anthropology. https://doi.org/10.1155/2012/327061
Walley, R. L., Kelly, J., Matthews, K. M., & Pilkington, B. (2004). Obstetric fistulae: A practical review. Reviews in Gynaecological Practice, 4(2), 73–81.
Weinberg, M. S., & Williams, C. J. (2005). Fecal matters: Habitus, embodiments, and deviance. Social Problems, 52(3), 315–336.
World Health Organization. (2018). Obstetric fistula. https://www.who.int/features/factfiles/obstetric_fistula/en/
Zou, J., Yamanaka, Y., John, M., Watt, M., Osterman, J., & Thielman, N. (2009). Religion and HIV in Tanzania: Influences of religious beliefs on HIV stigma, disclosure, and treatment attitudes. BMC Public Health, 9, 75–87.
Author information
Authors and Affiliations
Corresponding author
Ethics declarations
Conflict of Interest
The authors declare no competing interests.
Additional information
Publisher's Note
Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.
Rights and permissions
About this article
Cite this article
Dako-Gyeke, M., Kodom, R.B. & Ntewusu, J. Are We Human Beings Like Others? Stigmatization and Discrimination Experiences of Women Living with Obstetric Fistula in the Northern Region of Ghana. J. Hum. Rights Soc. Work 7, 311–321 (2022). https://doi.org/10.1007/s41134-022-00209-0
Accepted:
Published:
Issue Date:
DOI: https://doi.org/10.1007/s41134-022-00209-0