Introduction and hypothesis Genitourinary fistulas (usually arising following prolonged obstructed labor) are particularly devastating for women in low-income counties. Surgical repair is often difficult and delayed. While much attention has been devoted to technical surgical issues, the challenges of returning to normal personal, family, and community life after surgical treatment have received less scrutiny from researchers. We surveyed young Ugandan women recovering from genitourinary fistula surgery to assess their social reintegration needs following surgery. Methods A cross-sectional survey of 61 young women aged 14–24 years was carried out 6 months postoperatively. Interviews were carried out in local languages using a standardized, interviewer-administered, semistructured questionnaire. Data were entered using EpiData and analyzed using SPSS. Results Ongoing reintegration needs fell into interrelated medical, economic, and psychosocial domains. Although >90% of fistulas were closed successfully, more than half of women had medical comorbidities requiring ongoing treatment. Physical limitations, such as foot drop and pelvic muscle dysfunction impacted their ability to work and resume their marital relationships. Anxieties about living arrangements, income, physical strength, future fertility, spouse/partner fidelity and support, and possible economic exploitation were common. Sexual dysfunction after surgery—including dyspareunia, loss of libido, fear of intercourse, and anxieties about the outcome of future pregnancies—negatively impacted women’s relationships and self-esteem. Conclusions Young women recovering from genitourinary fistula surgery require individualized assessment of their social reintegration needs. Postoperative social reintegration services must be strengthened to do this effectively.
Uganda has one of the highest obstetric fistula rates in the world with approximately 200,000 women currently suffering. Surgical closure successfully treats fistula in the majority of cases, yet there is a severe shortage of facilities and trained surgeons in low-resource countries. The purpose of this study was to examine Ugandan women's experiences of obstetric fistula with the aim of adding narrative depth to the clinical literature on this devastating birth injury. Data were collected through semistructured interviews, focus groups, and participant observation. Resulting narratives were consensus coded, and key themes were member-checked using reciprocal ethnography. Women who suffered from fistula described barriers in accessing essential obstetric care during labor-barriers that are consistent with the three delays framework developed by Thaddeus and Maine. In this article, we extend this scholarship to discuss a fourth, critical delay experienced by fistula survivors-the delay in the diagnosis and treatment of their birth injury.
Aims: To understand whether reintegration services can improve quality of life (QoL) for women with incurable fistula (WIF) in Uganda. Methods: Standardized tools measuring health/psychosocial status and QoL were administered before and after intervention to assess impacts: Self-Reporting Questionnaire (SRQ-20), WHO QoL-BREF, and modified King’s Health Questionnaire (KHQ). Results: Before intervention, all participants had SRQ-20 scores >8, indicating psychological distress. After intervention, there was significant reduction (to 37%) in the proportion of participants with scores indicating distress (p=0.0003). As measured by WHO QoL-BREF, self-reported QoL and health satisfaction improved significantly after intervention (p=0.0003 and p<0.0001, respectively). Mean scores on specific domains (physical health, psychological, social relationships, and environment) also significantly increased (p<0.001). Physical health showed the largest increase and psychological the smallest. As measured by modified KHQ, participants’ perception of their health improved significantly after intervention (p<0.0001) as did their perception of how much fistula affects their life (p<0.0001). The KHQ also assesses seven functional domains. Mean scores significantly increased in each after intervention (p<0.01). Conclusions: TERREWODE’s intervention was associated with significant positive changes in participants’ perception of and satisfaction with health and wellbeing. While many effects of incurable fistula cannot be eliminated, individualized support may mitigate QoL impacts. Such interventions may be adapted in other settings; standardized measures enable comparison of approaches.
Aims: To document experiences of establishing state of the art women’s hospital offering holistic care to women with obstetric fistula and other child birth injuries. The care includes comprehensive treatment and management of the affected women, reintegration services that support the restoration of women’s dignity and clinical for prevention Methods: TERREWODE Women’s Community Hospital (TWCH) founded in 2016 is a subsidiary of The Association for Rehabilitation and Re-Orientation of Women for Development (TERREWODE), a Ugandan Non-Government Organization. We received, funding and support from International Fistula Alliance ,Ugandan Fistula Fund for TERREWODE, Catherine Hamlin Fistula Foundation, Hamlin Fistula USA and Hamlin Fistula Ethiopia. Results: The first phase has a 30-bed fistula surgical block and 30-bed rehabilitation and reintegration center, in addition to administration, catering and support facilities. This community-focused hospital will provide holistic routine care to patients with obstetric fistula and other childbirth injuries. It will also conduct: health education, research, Continuous Professional Development, patient rehabilitation and reintegration. On completion other services will include: conducting deliveries, neonatal care, and Antenatal care and family planning services. Up to 600 surgeries annually will be conducted in the unit. This will decongest public health facilities and reduce current backlog. Our critical success factors include: ability to attract and retain highly qualified and self-motivated personnel; our relationship with key stakeholders including Ministry of Health, suppliers, development partners and our target beneficiaries. Conclusions: It is possible with collaboration to establish specialized units offering quality care to women with birth trauma. Our experience can be replicated in other settings.
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