Experiences of Internalized and Enacted Stigma among Women with Obstetric Fistula in Tanzania

Background: Obstetric fistula is the development of a necrosis between the bladder and the vagina and/or the bladder and the rectum as a result of prolonged obstructed labor, resulting in urinary or fecal incontinence. In Tanzania surgical repair for obstetric fistula is provided freely by the government but it is estimated that there are over 25,000 women living with an untreated fistula. These women experience high degrees of psycho-social stresses exacerbated by the stigma surrounding their condition. There is a dire need to explore stigma within this population in order to better understand its impact, as stigma affects both treatment seeking behavior as well as long term recovery of those who access surgical repair.

Study Aims: This study aims to understand the experiences of stigma among women with obstetric fistulas by examining both internalized and enacted stigma, and by identifying pertinent correlates of internalized stigma.

Methods: This mixed-methods study utilized both quantitative and qualitative data collected in two related studies at a single hospital in Moshi, Tanzania. All study participants were women receiving surgical repair for an obstetric fistula. In the quantitative portion, cross-sectional survey data were collected from 52 patients. The primary outcome was fistula-related stigma, measured using an adaptation of the HASI-P stigma scale, which included constructs of both internalized and enacted stigma. In the qualitative portion, 45 patients participated in a semi-structured in-depth interview, which explored topics such as stressors caused by the fistula, coping mechanisms, and available support. The transcripts were analyzed using analytic memos and an iterative process of thematic coding using the framework of content analysis.

Results: Expressions of internalized stigma were common in the sample, with a median score of 2.1 on a scale of 0 – 3. Internalized was significantly correlated with negative religious coping, social participation, impact of incontinence and enacted stigma. Qualitative analysis was consistent and demonstrated widespread themes of shame and embarrassment. Experiences of enacted stigma were not as common (median score of 0), although some items, like those pertaining to mockery and blame, were endorsed by up to 25% of the study sample. Themes of anticipated stigma (isolation and non-disclosure due to the possibility of stigmatization) were also evident in the qualitative sample and may explain the low enacted stigma scores observed.

Conclusion: In this sample of women receiving surgical repair for an obstetric fistula, stigma was evident, with internalized stigma resulting in psychological impacts for patients. Experiences of both anticipated and enacted stigma were also observed. There is a need to explore interventions that would decrease stigma while also increasing support for these women, as stigma may be a barrier towards accessing surgical repair and reintegration following surgery.

Keywords: Tanzania, obstetric fistula, stigma, maternal health

Mobile Clinics & Bundled Healthcare: An Exploration of Patient Perceptions of the SughaVazhvu Approach to Chronic Care Management

As the burden of non-communicable diseases increases worldwide, it is imperative that health systems adopt delivery approaches that will enable them to provide accessible, high-quality, and low-cost care to patients that need consistent management of their lifelong conditions. This is especially true in low- and middle-income country settings, such as India, where the disease burden is high and the health sector resources to address it are limited. The subscription-based, managed care model that SughaVazhvu Healthcare—a non-profit social enterprise operating in rural Thanjavur, Tamil Nadu—has deployed demonstrates potential for ensuring continuity of care among chronic care patients in resource-strained areas. However, its effectiveness and sustainability will depend on its ability to positively impact patient health status and patient satisfaction with the care management they are receiving. Therefore, this study is not only a program appraisal to aid operational quality improvement of the SughaVazhvu Healthcare model, but also an attempt to identify the factors that affect patient satisfaction among individuals with chronic conditions actively availing services.

They’re There, Now What?: The Identities, Behaviors, and Perceptions of Black Judges

Prior to the Civil Rights Movement, fewer than 50 Black judges had been elected or appointed to the judiciary. As of August 2015, there are over 1,000 Black state and federal judges. As the number of black judges has increased, one question arises: have American courts been altered purely by this substantial increase? One expectation—and, at times, a prediction—behind the increased descriptive representation of Black judges is that their mere presence would alter the judiciary. It was supposed that these judges would substantively represent Black interests in the decisions they made. In other words, it was suspected, and predicted, that Blacks in the judiciary would enhance equality and justice by being aware of, responsive to, and advocating for African Americans. This theory about the likely role of Black judges derives from theoretical work on political representation and racial group consciousness, and empirical studies of Black elite behavior in other political institutions.

Despite such predictions, there is no corresponding scholarly consensus regarding whether Black judges possess a racial group consciousness and have racially distinctive judicial behavior. Therefore, the theory undergirding the demand for increased diversification, as a means to transform the judiciary, remains unsubstantiated. This is precisely where this project, “They’re There, Now What?: The Identities, Behavior, and Perceptions of Black Judges,” seeks to intervene in and explore, if not settle, the matter of whether black judges possess a racial group consciousness and exhibit racially-distinctive judicial behavior. It addresses a set of interrelated questions relevant to understanding whether we can view Black judges as representatives in ways that are similar to how we view other Black political officials. I examine these questions using a multi-method approach. For my analyses, I draw on diverse materials: the published biographies of every Black judge appointed to the federal bench, a survey experiment with a nationally-representative adult sample, and semi-structured interviews with 30 Black judges.

This research, which engages with scholarship on representation, group consciousness, judicial behavior, and candidate perceptions, offers new insights into the lives, perceptions, and behavior of Black judges, as well as the manifestations of Black substantive representation in the judiciary. My dissertation argues that, despite the general reluctance to use the term “representation” when referring to judges, we can consider Black judges as representatives. Black judges behave as substantive representatives by (1) sharing and understanding the experience, history, and perspectives of Black Americans, (2) challenging language, persons, policies, and laws they feel negatively affect, or violate the rights and liberties of, African Americans, (3) respecting African American litigants, and (4) ensuring the rights of African Americans are protected and the needs of black Americans are being met.

Only through research that considers the perspectives, identities, perceptions, and behavior of Black judges will we arrive at a more comprehensive understanding of the importance of racial diversity in the courts. As this project finds, a link between descriptive representation and substantive representation can, and frequently does exist within the judicial context. Such a link is significant given that Blacks’ liberty and justice through the American legal system continues to be subject to those who exercise judicial power. This dissertation has implications for the discourse surrounding the need for increased descriptive and substantive representation of Blacks in the judiciary, and the factors that affect representation in the justice system.