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.

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.

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.

Objectives

To explore trajectories of physical and psychosocial health, and their interrelationship, among women completing fistula repair in Uganda for 1 year post-surgery.

Methods

We 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.

Results

Across 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).

Conclusions

Our 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.

Fistula-related stigma is common. The absence of a unifying conceptual framework prevents a nuanced understanding of the nature of fistula-related stigma, comparison across contexts and the ability to contrast with other stigmas. It also hinders intervention development. We conducted in-depth interviews or focus groups with 60 women who had undergone fistula surgery 6-24 months prior at Mulago Hospital in Kampala, Uganda in 2014. Transcripts were analysed for experiences and consequences of enacted, anticipated and internalised stigma. Narratives revealed experiences with enacted stigma, including gossip, verbal abuse and social exclusion. Women also anticipated and feared stigma in the future. Internalised stigma reports revealed shame and low self-esteem: self-worth reduction, feeling disgraced and envisioning no future. Consequences included social isolation, changes to normal activities, non-disclosure and poor mental health. Refining stigma theory to specific conditions has resulted in a more nuanced understanding of stigma dimensions, manifestations, mechanisms and consequences, permitting comparison across contexts and populations and the development of stigma-reduction interventions. These lessons should be applied to fistula, acknowledging unique features: concealability, the potential for treatment, lack of community awareness and the social consequences of stillbirth. Reducing fistula-related stigma requires timely surgery and supportive care, stigma-reduction interventions and addressing the complex societal structures that perpetuate fistula.

ABSTRACTThis study aimed to explore the firsthand experiences of informal primary caregivers of women with female genital fistula in Uganda. Caregivers that accompanied women for surgery at Mulago National Teaching and Referral Hospital were recruited between January and September 2015. Caregivers participated in in-depth interviews and focus groups. Data were analysed thematically and informed adaptation of a conceptual framework. Of 43 caregivers, 84% were female, 95% family members, and most married and formally employed. Caregivers engaged in myriad personal care and household responsibilities, and described being on call for an average of 22.5 h per day. Four overlapping themes emerged highlighting social, economic, emotional, and physical experiences/consequences. The caregiving experience was informed by specific caregiver circumstances (e.g. personal characteristics, care needs of their patient) and dynamic stressors/supports within the caregiver's social context. These results demonstrate that caregivers' lived social, economic, emotional, and physical experiences and consequences are influenced by both social factors and individual characteristics of both the caregiver and their patient. This study may inform programmes and policies that increase caregiving supports while mitigating caregiving stressors to enhance the caregiving experience, and ultimately ensure its feasibility, particularly in settings with constrained resources.

Obstetric fistula is a debilitating and traumatic birth injury affecting 2-3 million women globally, mostly in sub-Saharan Africa and Asia. Affected women suffer physically, psychologically and socioeconomically. International efforts have increased access to surgical treatment, yet attention to a holistic outcome of post-surgical rehabilitation is nascent. We sought to develop and pilot test a measurement instrument to assess post-surgical family and community reintegration.We conducted an exploratory sequential mixed-methods study, beginning with 16 in-depth interviews and four focus group discussions with 17 women who underwent fistula surgery within two previous years to inform measure development. The draft instrument was validated in a longitudinal cohort of 60 women recovering from fistula surgery. Qualitative data were analyzed through thematic analysis. Socio-demographic characteristics were described using one-way frequency tables. We used exploratory factor analysis to determine the latent structure of the scale, then tested the fit of a single higher-order latent factor. We evaluated internal consistency and temporal stability reliability through Raykov's ρ and Pearson's correlation coefficient, respectively. We estimated a series of linear regression models to explore associations between the standardized reintegration measure and validated scales representing theoretically related constructs.Themes central to women's experiences following surgery included resuming mobility, increasing social interaction, improved self-esteem, reduction of internalized stigma, resuming work, meeting their own needs and the needs of dependents, meeting other expected and desired roles, and negotiating larger life issues. We expanded the Return to Normal Living Index to reflect these themes. Exploratory factor analysis suggested a four-factor structure, titled 'Mobility and social engagement', 'Meeting family needs', 'Comfort with relationships', and 'General life satisfaction', and goodness of fit statistics supported a higher-order latent variable of 'Reintegration.' Reintegration score correlated significantly with quality of life, depression, self-esteem, stigma, and social support in theoretically expected directions.As more women undergo surgical treatment for obstetric fistula, attention to the post-repair period is imperative. This preliminary validation of a reintegration instrument represents a first step toward improving measurement of post-surgical reintegration and has important implications for the evidence base of post-surgical reintegration epidemiology and the development and evaluation of fistula programming.

Objectives

To explore trajectories of physical and psychosocial health, and their interrelationship, among women completing fistula repair in Uganda for 1 year post-surgery.

Methods

We 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.

Results

Across 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).

Conclusions

Our 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.

Background

A female genital fistula, primarily caused by prolonged obstructed labor or after cesarean delivery in resource-limited countries, affects 500,000 to 2,000,000 women worldwide. Fistula is preventable with timely access to high-quality obstetrical care. Access to surgical repair of a female genital fistula has greatly increased over time. However, research surrounding postrepair reintegration, the process of returning to an individual's normal life, remains limited, and further efforts are needed to understand the factors shaping women's ability to rebuild their relationships and lives following repair.

Objective

This study aimed to characterize the 12-month reintegration trajectory after female genital fistula repair by participant sociodemographic and clinical characteristics.

Study design

This study analyzed quantitative survey and medical record data of women (N=60) participating in a longitudinal cohort study assessing recovery after genital fistula repair in Uganda, with baseline and 4 quarterly follow-up assessments in 12 months. The primary outcome of reintegration was assessed using a 19-item postfistula repair reintegration instrument (range, 0-100) where a higher score represents better reintegration. Predictors of interest included parity and living children, quality of life, depressive symptoms at baseline, self-esteem, stigma, trauma, physical symptoms, and social support. We described participant baseline characteristics using means and proportions and estimated a series of mixed-effects linear regression models, including interactions of characteristics with time to understand how these characteristics influence reintegration trajectory in the 12 months after repair.

Results

The participants' physical and psychosocial morbidities at baseline were high; more than 80% of participants reported fistula-related physical symptoms, 82% of participants described their general health as poor, and measures of self-esteem, overall social support, and overall quality of life were low. The mean reintegration score at baseline was 33 (standard deviation, 20), which increased to 78 (standard deviation, 19) at 12 months after fistula repair. The participant sociodemographic characteristics statistically associated with reintegration included any living children (β, 1.08; 95% confidence interval, -0.08 to 2.23). Moreover, psychosocial factors significantly affected reintegration with steeper trajectories for women with depressive symptoms (β, 0.89; 95% confidence interval, 0.02-1.75) or women experiencing internalized stigma (β, 0.05; 95% confidence interval, -0.00 to 0.11) and less steep for those with higher self-esteem (β, -0.11; 95% confidence interval, -0.24 to 0.01), overall social support (β, -0.06; 95% confidence interval, -0.12 to -0.01), and partner support (β, -0.21; 95% confidence interval, -0.35 to -0.07).

Conclusion

Understanding the prominent factors associated with differences in reintegration trajectories across the year after genital fistula surgery has the potential to inform interventions that mitigate challenges and improve women's postrepair recovery experiences.

BACKGROUND: Female genital fistula is a traumatic debilitating injury, frequently caused by prolonged obstructed labor, affecting between 500,000-2 million women in lower-resource settings. Vesicovaginal fistula causes urinary incontinence, and other morbidity may occur during fistula development. Women with fistula are stigmatized, limit social and economic engagement, and experience psychiatric morbidity. Improved surgical access has reduced fistula consequences yet post-repair risks impacting quality of life and well-being include fistula repair breakdown or recurrence and ongoing or changing urine leakage or incontinence. Limited evidence on risk factors contributing to adverse outcomes hinders interventions to mitigate adverse events. This study aims to quantify these adverse risks and inform clinical and counseling interventions to optimize womens health and quality of life following fistula repair through: identifying predictors and characteristics of post-repair fistula breakdown and recurrence (Objective 1) and post-repair incontinence (Objective 2), and to identify feasible and acceptable intervention strategies (Objective 3). METHODS: This mixed-methods study incorporates a prospective cohort of women with successful vesicovaginal fistula repair at approximately 12 fistula repair centers in Uganda (Objectives 1-2) followed by qualitative inquiry among key stakeholders (Objective 3). Cohort participants will have a baseline visit at the time of surgery followed by data collection at 2 weeks, 6 weeks, 3 months and quarterly thereafter for 3 years. Primary predictors to be evaluated include patient-related factors, fistula-related factors, fistula repair-related factors, and post-repair behaviors and exposures, collected via structured questionnaire at all data collection points. Clinical exams will be conducted at baseline, 2 weeks post-surgery, and for outcome confirmation at symptom development. Primary outcomes are fistula repair breakdown or fistula recurrence and post-repair incontinence. In-depth interviews will be conducted with cohort participants (n ~ 40) and other key stakeholders (~ 40 including family, peers, community members and clinical/social service providers) to inform feasibility and acceptability of recommendations. DISCUSSION: Participant recruitment is underway. This study is expected to identify key predictors that can directly improve fistula repair and post-repair programs and womens outcomes, optimizing health and quality of life. Furthermore, our study will create a comprehensive longitudinal dataset capable of supporting broad inquiry into post-fistula repair health. Trial Registration ClinicalTrials.gov Identifier: NCT05437939.