Trajectories of women's physical and psychosocial health following obstetric fistula repair in Uganda: a longitudinal study.

ObjectivesTo explore trajectories of physical and psychosocial health, and their interrelationship, among women completing fistula repair in Uganda for 1 year post-surgery.MethodsWe recruited a 60-woman longitudinal cohort at surgical hospitalisation from Mulago Hospital in Kampala Uganda (Dec 2014-June 2015) and followed them for 1 year. We collected survey data on physical and psychosocial health at surgery and at 3, 6, 9 and 12 months via mobile phone. Fistula characteristics were abstracted from medical records. All participants provided written informed consent. We present univariate analysis and linear regression results.ResultsAcross post-surgical follow-up, most women reported improvements in physical and psychosocial health, largely within the first 6 months. By 12 months, urinary incontinence had declined from 98% to 33% and general weakness from 33% to 17%, while excellent to good general health rose from 0% to 60%. Reintegration, self-esteem and quality of life all increased through 6 months and remained stable thereafter. Reported stigma reduced, yet some negative self-perception remained at 12 months (mean 17.8). Psychosocial health was significantly impacted by the report of physical symptoms; at 12 months, physical symptoms were associated with a 21.9 lower mean reintegration score (95% CI -30.1, -12.4).ConclusionsOur longitudinal cohort experienced dramatic improvements in physical and psychosocial health after surgery. Continuing fistula-related symptoms and the substantial differences in psychosocial health by physical symptoms support additional intervention to support women's recovery or more targeted psychosocial support and reintegration services to ensure that those coping with physical or psychosocial challenges are appropriately supported

Perceived Causes of Obstetric Fistula and Predictors of Treatment Seeking among Ugandan Women: Insights from Qualitative Research

Many obstetric fistula patients remain untreated or present late to treatment despite increasing surgical availability in Uganda. We explored women‘s perceptions of the cause of their obstetric fistula and their treatment seeking behaviours, including barriers and facilitators to timely care access. In-depth interviews and focus group discussions were conducted from June–August 2014 among 33 women treated for obstetric fistula at Mulago Hospital, Kampala. Data were analysed to describe dimensions and commonalities of themes identified under perceived causes and treatment seeking experiences, and their intersection. Perceived obstetric fistula causes included delays in deciding on hospital delivery, lengthy labour, injury caused by the baby, health worker incompetence, and traditional beliefs. Treatment seeking timing varied. Early treatment seeking was facilitated by awareness of treatment availability through referral, the media, community members, and support by partners and children. Barriers to early treatment seeking included inadequate financial and social support, erroneous perceptions about fistula causes and curability, incorrect diagnoses, and delayed or lack of care at health facilities. Our study supports broad educational and awareness activities, facilitation of social and financial support for accessing care, and improving the quality of emergency obstetric care and fistula treatment surgical capacity to reduce women‘s suffering. Keywords: Obstetric fistula, perceived causes, treatment seeking, maternal morbidity, UgandaDe nombreux patients atteints de fistule obstétricale restent non traités ou se présentent tardivement au traitement malgré une disponibilité chirurgicale croissante en Ouganda. Nous avons exploré la perception qu'ont les femmes de la cause de leur fistule obstétricale et de leurs comportements de recherche de traitement, y compris les obstacles et les facilitateurs pour un accès rapide aux soins. Des entretiens approfondis et des discussions de groupe ont été menés de juin à août 2014 auprès de 33 femmes traitées pour fistule obstétricale à l'hôpital de Mulago, Kampala. Les données ont été analysées pour décrire les dimensions et les points communs des thèmes identifiés sous les causes perçues et les expériences de recherche de traitement, et leur intersection. Les causes perçues de la fistule obstétricale comprenaient des retards dans les décisions d'accouchement à l'hôpital, un travail prolongé, des blessures causées par le bébé, l'incompétence des agents de santé et les croyances traditionnelles. Le calendrier de recherche du traitement variait. La recherche précoce d'un traitement a été facilitée par la sensibilisation à la disponibilité du traitement grâce à l'aiguillage, aux médias, aux membres de la communauté et au soutien des partenaires et des enfants. Les obstacles à la recherche d'un traitement précoce comprenaient un soutien financier et social inadéquat, des perceptions erronées sur les causes et la curabilité des fistules, des diagnostics incorrects et un retard ou un manque de soins dans les établissements de santé. Notre étude soutient de vastes activités d'éducation et de sensibilisation, la facilitation du soutien social et financier pour l'accès aux soins et l'amélioration de la qualité des soins obstétricaux d'urgence et du traitement chirurgical de la fistule pour réduire la souffrance des femmes.  Mots-clés: Fistule obstétricale, causes perçues, recherche de traitement, morbidité maternelle, Ougand

“...Our support is not enough”: a qualitative analysis of recommendations from informal caregivers of women with female genital fistula in Uganda

Informal caregivers remain critical across the care continuum for complex and stigmatized conditions including female genital fistula, particularly in lower-resource settings burdened by underfunded health systems and workforce shortages. These caregivers often provide significant nonmedical support in both community and facility settings, without pay. Despite their unique insight into the lived experiences of their patients, few studies center the perspectives of informal caregivers. We asked informal caregivers of women seeking surgical treatment of fistula in Kampala Uganda for their ideas about what would improve the recovery and reintegration experiences of their patients. Economic empowerment and community capacity building emerged as primary themes among their responses, and they perceived opportunities for clinical medicine and global health to strengthen strategies for fistula prevention through reintegration. Informal caregivers urged simultaneous investment in women's economic status and community capacity to build fistula-related awareness, knowledge, and skills to improve inclusion of both fistula patients and their informal caregivers

Social support among women with genital fistula in Uganda

Resulting from prolonged obstructed labour, iatrogenic and traumatic aetiologies, female genital fistula in low-resource settings causes a significant physical and psychosocial burden. Social support is an important mechanism to build resilience to health challenges. This study aimed to understand the role of emotional, informational and tangible social support for Ugandan women affected by fistula. Thirty-three participants who had had fistula surgery 6-24 months prior to the study were recruited from Mulago Hospital in Kampala, Uganda. Data from in-depth interviews (n = 16) and 4 focus group discussions were analysed thematically using a social support framework. Various individuals were key providers of social support across the different domains. They included family, friends, community organisations, and other women affected by fistula. Social support was critical in helping women cope with fistula, access fistula care, and post-repair recovery. Women relied heavily on tangible and emotional support to meet their physical and psychological needs. Support-enhancing interventions for women and their families, particularly those offering emotional and tangible support, may be a promising strategy for improving the experiences and quality of life of women affected by fistula

Validation of an adapted instrument to measure female genital fistula-related stigma

Female genital fistula results in severe physical, psychological, and social sequelae. Qualitative research confirms stigma pervasiveness; however, no quantitative instrument exists to measure fistula-related stigma. We adapted an existing HIV-related stigma instrument to fistula-related stigma and assessed its reliability and validity. We recruited 60 Ugandan women seeking genital fistula surgery (December 2014–June 2015). We used exploratory factor analysis to explore the scale’s latent structure and evaluated internal consistency reliability with Raykov’s ρ statistic. We assessed construct validity through linear regression of stigma with quality of life, depressive symptoms and self-esteem. We retained 15 items across factors ‘enacted stigma’ and ‘internalised stigma’ (ρ = 0.960 and ρ = 0.748, respectively). Stigma was inversely associated with all quality of life domains; effect sizes were largest for environmental (enacted stigma, 0.69-point reduction) and psychological (internalised stigma, 0.67-point reduction) domains. Both stigma domains were associated positively with depressive symptoms and inversely with self-esteem, with 0.75 and 1.05-point increases in depressive symptoms and 0.45 and 0.77-point decreases in self-esteem for enacted and internalised stigma, respectively. Results suggest the reliability and validity of the adapted fistula stigma instrument. This instrument may help us understand stigma levels, compare stigma across individuals and communities, prioritise stigma-reduction strategies, and assess intervention impact

Perceived Causes of Obstetric Fistula and Predictors of Treatment Seeking among Ugandan Women: Insights from Qualitative Research.

Many obstetric fistula patients remain untreated or present late to treatment despite increasing surgical availability in Uga nda. We explored women's perceptions of the cause of their obstetric fistula and their treatment seeking behaviours, including barriers and facilitators to timely care access. In-depth interviews and focus group discussions were conducted from June-August 2014 among 33 women treated for obstetric fistula at Mulago Hospital, Kampala. Data were analysed to describe dimensions and commonalities of themes identified under perceived causes and treatment seeking experiences, and their intersection. Perceived obstetric fistula causes included delays in deciding on hospital delivery, lengthy labour, injury caused by the baby, health worker incompetence, and traditional beliefs. Treatment seeking timing varied. Early treatment seeking was facilitated by awareness of treatment availability through referral, the media, community members, and support by partners and children. Barriers to early treatment seeking included inadequate financial and social support, erroneous perceptions about fistula causes and curability, incorrect diagnoses, and delayed or lack of care at health facilities. Our study supports broad educational and awareness activities, facilitation of social and financial support for accessing care, and improving the quality of emergency obstetric care and fistula treatment surgical capacity to reduce women's suffering