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

Health Knowledge, Attitudes, and Practices among Street Children in LMICs

Background: Worldwide, it is estimated that there are up to 150 million street children. Street children are an understudied, vulnerable population. While many studies have characterized street children’s physical health, few have addressed the circumstances and barriers to their utilization of health services.

Methods: A systematic literature review was conducted to understand the barriers and facilitators that street children face when accessing healthcare in low and middle income countries. Six databases were used to search for peer review literature and one database and Google Search engine were used to find grey literature (theses, dissertations, reports, etc.). There were no exclusions based on study design. Studies were eligible for inclusion if the study population included street children, the study location was a low and middle income country defined by the World Bank, AND whose subject pertained to healthcare.

In addition, a cross-sectional study was conducted between May 2015 and August 2015 with the goal of understanding knowledge, attitudes, and health seeking practices of street children residing in Battambang, Cambodia. Time location and purposive sampling were used to recruit community (control) and street children. Both boys and girls between the ages of 10 and 18 were recruited. Data was collected through a verbally administered survey. The knowledge, attitudes and health seeking practices of community and street children were compared to determine potential differences in healthcare utilization.

Results: Of the 2933 abstracts screened for inclusion in the systematic literature review, eleven articles met all the inclusion criteria and were found to be relevant. Cost and perceived stigma appeared to be the largest barriers street children faced when attempting to seek care. Street children preferred to receive care from a hospital. However, negative experiences and mistreatment by health providers deterred children from going there. Instead, street children would often self treat and/or purchase medicine from a pharmacy or drug vendor. Family and peer support were found to be important for facilitating treatment.

The survey found similar results to the systematic review. Forty one community and thirty four street children were included in the analysis. Both community and street children reported the hospital as their top choice for care. When asked if someone went with them to seek care, both community and street children reported that family members, usually mothers, accompanied them. Community and street children both reported perceived stigma. All children had good knowledge of preventative care.

Conclusions: While most current services lack the proper accommodations for street children, there is a great potential to adapt them to better address street children’s needs. Street children need health services that are sensitive to their situation. Subsidies in health service costs or provision of credit may be ways to reduce constraints street children face when deciding to seek healthcare. Health worker education and interventions to reduce stigma are needed to create a positive environment in which street children are admitted and treated for health concerns.

A Qualitative Study of Contextual Factors’ Impact on the Adaptation of a Caregiver-mediated Early Autism Intervention in South Africa

Background: Autism Spectrum Disorder (ASD) is a major global health challenge as the majority of individuals with ASD live in low- and middle-income countries (LMICs) and receive little to no services or support from health or social care systems. Despite this global crisis, the development and validation of ASD interventions has almost exclusively occurred in high-income countries, leaving many unanswered questions regarding what contextual factors would need to be considered to ensure the effectiveness of interventions in LMICs. This study sought to conduct explorative research on the contextual adaptation of a caregiver-mediated early ASD intervention for use in a low-resource setting in South Africa.

Methods: Participants included 22 caregivers of children with autism, including mothers (n=16), fathers (n=4), and grandmothers (n=2). Four focus groups discussions were conducted in Cape Town, South Africa with caregivers and lasted between 1.5-3.5 hours in length. Data was recorded, translated, and transcribed by research personnel. Data was then coded for emerging themes and analyzed using the NVivo qualitative data analysis software package.

Results: Nine contextual factors were reported to be important for the adaptation process including culture, language, location of treatment, cost of treatment, type of service provider, familial needs, length of treatment, support, and parenting practices. One contextual factor, evidence-based treatment, was reported to be both important and not important for adaptation by caregivers. The contextual factor of stigma was identified as an emerging theme and a specifically relevant challenge when developing an ASD intervention for use in a South African context.

Conclusions: Eleven contextual factors were discussed in detail by caregivers and examples were given regarding the challenges, sources, and preferences related to the contextual adaptation of a parent-mediated early ASD intervention in South Africa. Caregivers reported a preference for an affordable, in-home, individualized early ASD intervention, where they have an active voice in shaping treatment goals. Distrust of community-based nurses and health workers to deliver an early ASD intervention and challenges associated with ASD-based stigma were two unanticipated findings from this data set. Implications for practice and further research are discussed.

The Relationship Between Support Systems and Disease Burden for Families Coping with Sickle Cell Disease in South Africa and Cameroon

Background: Sickle cell disease (SCD) is a debilitating genetic blood disorder that seriously impacts the quality of life of affected individuals and their families. With 85% of cases occurring in sub-Saharan Africa, it is essential to identify the barriers and facilitators of optimal outcomes for people with SCD in this setting. This study focuses on understanding the relationship between support systems and disease outcomes for SCD patients and their families in Cameroon and South Africa.

Methods: This mixed-methods study utilizes surveys and semi-structured interviews to assess the experiences of 29 SCD patients and 28 caregivers of people with SCD across three cities in two African countries: Cape Town, South Africa; Yaoundé, Cameroon; and Limbe, Cameroon.

Results: Patients in Cameroon had less treatment options, a higher frequency of pain crises, and a higher incidence of malaria than patients in South Africa. Social support networks in Cameroon consisted of both family and friends and provided emotional, financial, and physical assistance during pain crises and hospital admissions. In South Africa, patients relied on a strong medical support system and social support primarily from close family members; they were also diagnosed later in life than those in Cameroon.

Conclusions: The strength of medical support systems influences the reliance of SCD patients and their caregivers on social support systems. In Cameroon the health care system does not adequately address all factors of SCD treatment and social networks of family and friends are used to complement the care received. In South Africa, strong medical and social support systems positively affect SCD disease burden for patients and their caregivers. SCD awareness campaigns are necessary to reduce the incidence of SCD and create stronger social support networks through increased community understanding and decreased stigma.

Fluidity in Women's Sexuality

Sexual fluidity has been proposed as a key component of women’s sexuality. However, not all women acknowledge or experience fluidity in their sexual attractions and behaviors. Because this is the case, what proportion of women are experiencing sexual fluidity? Research has concluded that a “sizeable minority” of women are experiencing sexual fluidity, with the highest levels found among those that identify as a sexual minority. Furthermore, certain individual differences have been found to be associated with a heightened (or weakened) likelihood of experiencing or embracing sexual fluidity. Through extensive literature reviews on women’s sexuality and sexual fluidity, it has been concluded that sexual orientation identity status, as well as psychological, biological, and social factors, all play roles in the expression or degree of sexual fluidity experienced. This means that certain personal and environmental factors have the ability to both hinder and/or nurture fluidity in a woman’s sexual attractions, behaviors, and experiences. Accepting that women’s sexuality is fluid and teaching about the variability sometimes observed in women’s sexuality allows us to not only see that experiencing same-sex attractions, desires, or experiences is not necessarily abnormal, but also that it may be more common than originally assumed, which has the potential to reduce societal stigma associated with homosexuality.