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Health Care Women Int ; : 1-15, 2020 Oct 08.
Artigo em Inglês | MEDLINE | ID: mdl-33030977


Rapid dissemination of mobile technology provides substantial opportunity for overcoming challenges reaching rural and marginalized populations. We assessed feasibility and acceptability of longitudinal mobile data capture among women undergoing fistula surgery in Uganda (n = 60) in 2014-2015. Participants were followed for 12 months following surgery, with data captured quarterly, followed by interviews at 12 months. Participant retention was high (97%). Most respondents reported no difficulty with mobile data capture (range 93%-100%), and preferred mobile interview (88%-100%). Mobile data capture saved 1000 person-hours of transit and organizational time. Phone-based mobile data collection provided social support. Our results support this method for longitudinal studies among geographically and socially marginalized populations.

Cult Health Sex ; 22(3): 352-367, 2020 03.
Artigo em Inglês | MEDLINE | ID: mdl-31035913


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.

Trop Med Int Health ; 24(1): 53-64, 2019 01.
Artigo em Inglês | MEDLINE | ID: mdl-30372572


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.

Qualidade de Vida/psicologia , Autoimagem , Estigma Social , Fístula Vaginal/psicologia , Saúde da Mulher , Adaptação Psicológica , Feminino , Humanos , Estudos Longitudinais , Fístula Retovaginal/psicologia , Uganda , Fístula Vaginal/cirurgia , Fístula Vesicovaginal/psicologia
Reprod Health ; 14(1): 109, 2017 Sep 02.
Artigo em Inglês | MEDLINE | ID: mdl-28865473


BACKGROUND: 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. METHODS: 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. RESULTS: 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. CONCLUSION: 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.

Parto Obstétrico/efeitos adversos , Apoio Social , Fístula Vaginal/cirurgia , Feminino , Humanos , Modelos Lineares , Qualidade de Vida , Fatores Socioeconômicos , Uganda , Fístula Vaginal/psicologia
Reprod Health ; 12: 115, 2015 Dec 18.
Artigo em Inglês | MEDLINE | ID: mdl-26683687


BACKGROUND: Obstetric fistula is a debilitating birth injury that affects an estimated 2-3 million women globally, most in sub-Saharan Africa and Asia. The urinary and/or fecal incontinence associated with fistula affects women physically, psychologically and socioeconomically. Surgical management of fistula is available with clinical success rates ranging from 65-95 %. Previous research on fistula repair outcomes has focused primarily on clinical outcomes without considering the broader goal of successful reintegration into family and community. The objectives for this study are to understand the process of family and community reintegration post fistula surgery and develop a measurement tool to assess long-term success of post-surgical family and community reintegration. METHODS: This study is an exploratory sequential mixed-methods design including a preliminary qualitative component comprising in-depth interviews and focus group discussions to explore reintegration to family and community after fistula surgery. These results will be used to develop a reintegration tool, and the tool will be validated within a small longitudinal cohort (n = 60) that will follow women for 12 months after obstetric fistula surgery. Medical record abstraction will be conducted for patients managed within the fistula unit. Ethical approval for the study has been granted. DISCUSSION: This study will provide information regarding the success of family and community reintegration among women returning home after obstetric fistula surgery. The clinical and research community can utilize the standardized measurement tool in future studies of this patient population.

Fístula Retovaginal/cirurgia , Fístula Vesicovaginal/cirurgia , Adulto , Feminino , Humanos , Estudos Longitudinais , Complicações do Trabalho de Parto , Gravidez , Qualidade de Vida , Recuperação de Função Fisiológica , Fístula Retovaginal/complicações , Fístula Retovaginal/psicologia , Projetos de Pesquisa , Apoio Social , Fatores de Tempo , Resultado do Tratamento , Uganda , Incontinência Urinária/etiologia , Incontinência Urinária/cirurgia , Fístula Vesicovaginal/complicações , Fístula Vesicovaginal/psicologia