"I became a person again": Social inclusion and participation experiences of Ethiopian women post-obstetric fistula surgical repair.

BACKGROUND: Childbirth-related mortality and morbidity affect many women globally, especially in low-income countries like Ethiopia. Obstetric fistula-a preventable condition mainly caused by prolonged and obstructed labor-can lead to physical, psychological, and social challenges, affecting women's social participation and inclusion. OBJECTIVE: This study aims to understand women's social participation and inclusion experiences post-obstetric fistula surgery. METHODS: This study is part of a larger research project investigating the social inclusion process of women who have had obstetric fistula surgery in Ethiopia. For this study, we conducted a qualitative exploration of women's experiences, guided by a constructivist grounded theory approach. Twenty-one women discharged from fistula treatment facilities following obstetric fistula surgery were interviewed using a semi-structured interview guide. Data was analyzed using Charmaz's inductive analysis approach, which involves an initial line-by-line coding followed by focused coding to identify the most significant codes. Subsequently, sub-themes and themes were developed from the focused codes. RESULT: The data analysis revealed four themes reflecting the women's experiences of social participation and inclusion. These are the experience of recovery and the journey toward social participation, participating in expected and meaningful activities, the continued challenge with a romantic relationship, and formal and informal support. Overall, the women who received fistula surgery reported positive life changes, especially regarding their physical well-being. However, they continued to face social challenges such as financial hardship, reproductive health problems, and issues with marriage and family life, which negatively impacted their social participation and inclusion experiences. CONCLUSION: While more research is needed, the findings of this study suggest that the social aspects of obstetric fistula are crucial for healthcare professionals to consider. Providing appropriate care and support to address unmet social relationship, employment, and childcare needs could enable women to lead fulfilling lives.

Integrated mental health screening for obstetric fistula patients in Mali: From evidence to policy.

BACKGROUND: Obstetric fistula significantly impacts women's mental health and well-being. Routine screening for mental health in fistula repair programs can be a gateway to link patients to services, and can produce routine data to inform programmatic investments. This study observed the integration of a mental health screening program into an obstetric fistula repair program in Mali, with two specific objectives: 1) to describe the social and mental health well-being of women presenting with obstetric fistulas in Mali, and 2) to document the impact of the mental health screening pilot on policy change in Mali. METHODS: Seven fistula repair campaigns were conducted between June 2016 and May 2017. All individuals presenting for fistula repair completed a mental health assessment at intake, including a depression screener (PHQ-9) and an assessment of psycho-social impacts of fistula. The depression screener was repeated three months following inpatient discharge. Findings were shared with stakeholders in Mali and impacts on policy were documented. RESULTS: Of 207 women who presented for fistula repair, 167 patients completed the mental health assessment at surgical intake, and 130 patients repeated the screener at 3-month follow-up. At intake, 36.5% of women had moderate or severe depression, decreasing to 16.9% at follow-up. The mean depression score differed significantly by timepoint (9.14 vs. 6.72, p <0.001). Results were shared in a report with stakeholders, and consultations with the Mali Ministry of Health. As a result of advocacy, mental health was a key component of Mali's National Fistula Prevention and Treatment Strategy (2018-2022). CONCLUSION: The high prevalence of depression in Malian fistula patients underscores a need for more robust mental health support for patients after surgery. Data on mental health from routine screening informs community reintegration strategies for individual patients, elevates the overall quality of care of fistula repair programs by addressing patients' holistic health needs, and contributes to evidence-informed decision-making and data-driven policy change within the larger health system.

Obstetric fistula and safe spaces: discussions of stigmatised healthcare topics at a fistula centre.

Obstetric fistula can have major psychosocial repercussions for women and their families, which are often hidden as a result of stigmatisation. We investigated how the sexual function of women with vesicovaginal fistula differs before and after fistula repair at the Fistula Care Centre in Lilongwe, Malawi. Structured interviews and physical examinations were conducted with 115 women from the central region of Malawi. The average age of participants was 32 years and the majority lived in rural communities. Patients were more responsive than expected to discussing how genital modification, gender-based violence, marital relationships and traditional medicine impact their sexual function. Of the 115 participants interviewed, 107 (93%) reported stretching their labia and 42 (37%) were coerced into sexual activities before surgery. Before repair, 56 (49%) women reported husbands being unfaithful. 12 (10%) had new cowives after surgery. 38 (33%) used traditional medicine to enhance their sexual function before surgery. We conclude that specialised centres providing care for women, such as a fistula centre, might offer a unique space in which women can more comfortably discuss stigmatised subjects. This suggests that such issues should be incorporated into services where appropriate.

Prognostic factors and long-term outcomes of obstetric fistula care using the Tanguiéta model.

OBJECTIVES: To identify factors influencing the long-term prognosis after surgical repair of obstetric fistula, establish a prognosis-based classification system, and examine changes in quality of life after surgery. METHODS: A retrospective study of 308 women who underwent obstetric fistula repair at Saint Jean de Dieu Hospital, Tanguiéta, Benin, between 2008 and 2016, and were supported by a multidisciplinary management model. All participants were from rural areas of Burkina Faso. The women completed interviews before, immediately after, and 2, 4-6, and 12 months after surgery to assess their clinical state and socioeconomic and psychologic status. RESULTS: Overall, the fistulae of 230/274 (83.9%) women were considered to be repaired after 12 months. Factors associated with poor repair outcome included the presence of sclerotic tissue (odds ratio [OR], 0.25; 95% confidence interval [CI], 0.11-0.53) and intraoperative complications (OR, 0.16; 95% CI, 0.07-0.39). Women with successful surgery had a better quality of life as compared with women with an unrepaired fistula (Ditrovie score, 1.1 vs 3.9; P<0.001). CONCLUSION: The multidisciplinary Tanguiéta model for management of obstetric fistula allowed successful fistula closure, thereby facilitating the women's long-term social reintegration, and improved quality of life.

The loss of dignity: social experience and coping of women with obstetric fistula, in Northwest Ethiopia.

BACKGROUND: Obstetric fistula is a debilitating condition resulted from poorly (un) managed prolonged obstructed labor. It has significant psychosocial and economic consequences on those affected and their families. Data regarding experiences and coping mechanisms of Ethiopian women with fistula is scarce. METHODS: Qualitative design was employed with in depth interview technique by using open ended interview guide. Eleven fistula patients waiting for surgical repair at the fistula treatment center of Gondar Specialized Referral Hospital were selected with typical case selection. Thedata were audio-taped, transcribed and translated from Amharic to English. Open code version 4.03was used to organize data and identify themes for analysis. RESULTS: The age of participants of the study ranged between 19 to 43 years. Ten of them were from rural areas. Regarding their educational status eight cannot read and write. Similar number were either separated or divorced. Six of them lived with obstetric fistula without treatment from one to five years. Five women related their condition to their fate. The women faced challenges in role performance, marital and social relationships and economic capability. Frequent bathing, use of stripes of old clothes as a pad, self-isolation and hiding from being observed, wearing extra clothes as cover, increasing water intake and reducing hot drinks and fluids other than water were the ways they have devised to cope with the incontinence. CONCLUSION: The study participants reported that they experienced deep sense of loss, diminished self-worth and multiple social challenges. They coped with the incontinence in various ways among which some were non effective and might have continuing negative impact on woman's quality of life even after corrective surgery. Developing bridging intervention for early identification and referral could reduce period of women's suffering.

A grounded theory of regaining normalcy and reintegration of women with obstetric fistula in Kenya.

BACKGROUND: Obstetric fistula is a reproductive health problem causing immense suffering to 1% of women in Kenya that is formed as sequelae of prolonged obstructed labour. It is a chronic illness that disrupts women lives, causing stigma and isolation. Fistula illness often introduces a crisis in women's life begetting feelings of shame and serious disruption to their social, psychological, physical and economic lives, in addition to dealing with moral and hygiene challenges. Currently, women undergo free of charge surgery at vesicovaginal fistula (VVF) camps held in national referral hospitals and dedicated fistula centres generating a significant pool of women who have undergone surgery and are ready to regain normal lives. OBJECTIVE: The purpose of this study was to explore experiences of women immersing back into communities and their return to normalcy after surgery in three VVF repair centres in Kenya. We set out to answer the question: what strategies improve obstetric fistula patients' reintegration process? METHODS: We used grounded theory methodology to capture the reintegration and regaining normalcy experiences of women after surgery. Narrative interviews were held with 60 women during community follow-up visits in their homes after 6-19 months postoperatively. Grounded theory processes of theoretical sampling, repeated measurement; constant comparative coding in three stage open, axial and selective coding; memoing, reflexivity and positionality were applied. Emergent themes helped generate a grounded theory of reintegration and regaining normalcy for fistula patients. RESULTS: To regain normal healthy lives, women respond to fistula illness by seeking surgery.. After surgery, four possible outcomes of the reintegration process present; reintegration fully or partially back into their previous communities, not reintegrated or newly integrating away from previous social and family settings. The reintegration statuses point to the diversity outcomes of care for fistula patients and the necessity of tailoring treatment programs to cater for individual patient needs. CONCLUSION: The emerging substantive theory on the process of reintegration and regaining normalcy for fistula patients is presented. The study findings have implications for fistula care, training and policy regarding women's health, suggesting a model of care that encompasses physical, social, economic and psychological aspects of care after surgery and discharge.

Reintegration needs of young women following genitourinary fistula surgery in Uganda.

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.

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

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.

Delays contributing to the development and repair of obstetric fistula in northern Tanzania.

INTRODUCTION AND HYPOTHESIS: Delays in receiving obstetric care during labor contribute to high rates of maternal morbidity in sub-Saharan Africa. This exploratory study was conducted to identify important delays experienced during the development and subsequent repair of obstetric fistula in northern Tanzania. METHODS: Sixty women presenting to a tertiary hospital with obstetric fistula completed structured surveys about the birth experience that led to fistula development and their experiences seeking surgical repair. A subset of 30 provided qualitative accounts. Clinical data were collected postsurgery. Data were analyzed according to a four-delay model, with iterative analysis allowing for triangulation of all sources. RESULTS: During the index pregnancy, women labored for a median of 48 h. Most women (53/60; 88.3%) delivered in a facility but labored for a median of 12.4 h before deciding to seek care (Delay 1). Women spent a median of 1.25 h traveling to a facility (Delay 2). After presenting to care, 15/51 (29.4%) waited at least an hour to see a medical provider, and 35/53 (66.0%) required transfer to another facility (Delay 3). Women lived with fistula for a median of 10 years (Delay 4). Qualitative data provided context and a deeper understanding of the factors contributing to each delay. CONCLUSIONS: Critical delays exist both outside and within the healthcare system that contribute to the development and timely repair of obstetric fistula. Healthcare system strengthening, particularly with regard to emergency obstetric care, is critical to reduce the burden of obstetric fistula in women in Tanzania.

Changing trends in the etiology and management of vesicovaginal fistula.

Vesicovaginal fistula has remained a scourge and of public health importance, causing significant morbidity, and psychological and social problems to the patient. Continuous wetness, odor and discomfort cause serious social issues. The diagnosis has been traditionally based on clinical evaluation, dye testing, cystoscopic examination and contrast studies. A successful repair of such fistulas requires an accurate diagnosis and timely surgical intervention using techniques that are based on basic surgical principles with or without the use of interpositional flaps. The method of repair depends on the type and location of the fistula, and the surgeon's training and expertise. The main complications are recurrence and stress/urge incontinence. Prevention must include universal education, improvement in the social and nutritional status of women, discouraging early marriages, and the provision of improved accessible healthcare services.

An investigation of the relationship between autonomy, childbirth practices, and obstetric fistula among women in rural Lilongwe District, Malawi.

BACKGROUND: Obstetric fistula is a childbirth injury caused by prolonged obstructed labor that results in destruction of the tissue wall between the vagina and bladder. Although obstetric fistula is directly caused by prolonged obstructed labor, many other factors indirectly increase fistula risk. Some research suggests that many women in rural Malawi have limited autonomy and decision-making power in their households. We hypothesize that women's limited autonomy may play a role in reinforcing childbirth practices that increase the risk of obstetric fistula in this setting by hindering access to emergency care and further prolonging obstructed labor. METHODS: A medical student at Baylor College of Medicine partnered with a Malawian research assistant in July 2015 to conduct in-depth qualitative interviews in Chichewa with 25 women living within the McGuire Wellness Centre's catchment area (rural Central Lilongwe District) who had received obstetric fistula repair surgery. RESULTS: This study assessed whether women's limited autonomy in rural Malawi reinforces childbearing practices that increase risk of obstetric fistula. We considered four dimensions of autonomy: sexual and reproductive decision-making, decision-making related to healthcare utilization, freedom of movement, and discretion over earned income. We found that participants had limited autonomy in these domains. For example, many women felt pressured by their husbands, families, and communities to become pregnant within three months of marriage; women often needed to seek permission from their husbands before leaving their homes to visit the clinic; and women were frequently prevented from delivering at the hospital by older women in the community. CONCLUSIONS: Many of the obstetric fistula patients in our sample had limited autonomy in several or all of the aforementioned domains, and their limited autonomy often led both directly and indirectly to an increased risk of prolonged labor and fistula. Reducing the prevalence of fistula in Malawi requires a broad understanding of the causes of fistula, so we recommend that the relationship between women's autonomy and fistula risk undergo further investigation.

Beyond repair - family and community reintegration after obstetric fistula surgery: study protocol.

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.

Obstetric Fistula "Disease" and Ensuing Care: Patients' Views in West-Africa.

We explored obstetric fistula patients' real-life experience of care in modern Health System. Our aim was to analyze how these women's views impacted their care uptake and coping. We conducted 67 in-depth interviews with 35 fistula patients or former patients in 5 fistula repair centers within referral hospitals in Mali and Niger. Perceptions of obstetric fistula influenced the care experience and vice versa. Obstetric fistula was viewed as a severe chronic disease due to length of care process, limitation of surgery and persisting physical and moral suffering. We highlight the opportunity to build on patients' views on obstetric fistula trauma and care in order to implement an effective holistic care process.

Health-related quality of life among women in rural Bangladesh after surgical repair of obstetric fistula.

OBJECTIVE: To identify factors influencing health-related quality of life (QOL) among women in Bangladesh after successful surgical repair of obstetric fistula. METHODS: In 2012, a cross-sectional study was conducted of women who had undergone a successful surgical repair of an obstetric fistula at a hospital in northwest Bangladesh between June 2005 and May 2012. Sociodemographic, obstetric, and fistula-related information was collected by interview. Health-related QOL was assessed using the 36-item Short Form Health Survey (SF-36). RESULTS: A total of 113 women were included. Linear regression analysis showed that discrimination experiences negatively affected four of the eight scales of SF-36, as well as both the physical and mental component summaries (P<0.05 for all). Married status had a positive effect on four scales and the mental component summary (P<0.05 for all). Age inversely affected two scales and the physical component summary (P<0.01 for all). Internalized stigma negatively influenced two scales (P<0.05 for both). Not having living children and experiencing two or more previous stillbirths negatively influenced one scale (P<0.05 for both). CONCLUSION: Several factors influence health-related QOL after obstetric fistula repair; a comprehensive approach is needed to address these issues.

Contraception knowledge and practice among fistula patients at referral centers in Kenya.

OBJECTIVE: To establish knowledge and practice of contraception among patients presenting with a fistula attending fistula care services at 4 centers in Kenya. METHODS: In a descriptive cohort study carried out between January and December 2011, patients presenting with a history of urine and/or stool leakage were screened and those with confirmed diagnosis of fistula were assessed and prepared for surgery. Informed consent was obtained from study participants before surgical intervention. After surgery, a standard questionnaire was used to collect information on sociodemographics, duration of leakage, and reproductive health practices. RESULTS: A total of 206 patients were interviewed. Most of the patients were young (mean age 22 years). Literacy was low: only 1.7% reported tertiary-level education, and 56.7% reported primary-level education. With regard to family planning, 76.2% of patients expressed a willingness to use contraception after fistula repair. CONCLUSION: Among patients presenting with a fistula in Kenya, the unmet need for family planning was high. There is an urgent need for healthcare providers to integrate family planning services in fistula care programs.

Depression among women with obstetric fistula in Kenya.

OBJECTIVE: To establish the prevalence of depression and describe associated factors among fistula patients attending an obstetric fistula surgical camp in Kenya. METHODS: A cross-sectional study was conducted focusing on obstetric fistula patients attending a national fistula camp held in August 2008 at Kenyatta National Hospital, Nairobi, Kenya. A structured questionnaire was used to obtain sociodemographic data and medical histories for all consenting patients before surgery. Depression measures were obtained using the Patient Health Questionnaire-9. RESULTS: Of the 70 women interviewed, 2 (2.9%) and 12 (17.1%) reported a history of psychiatric illness and suicidal ideations, respectively. Depression was present in 51 (72.9%) patients, with 18 (25.7%) meeting criteria for severe depression. Depression was significantly associated with women older than 20 years of age (P=0.01), unemployment (P=0.03), lack of social support following fistula (P=0.04), and living with fistula for over 3 months (P=0.01). CONCLUSION: Women with obstetric fistula are predisposed to high levels of depression. A holistic management approach, including mental health care and family support, is recommended.

The fistula crisis in sub-Saharan Africa: an ongoing struggle in education and awareness.

This article examines the social and physical causes of obstetric fistulas, as well as resulting social and psychological consequences. Preventative strategies are addressed using Niger as a microcosm for this devastating condition that affects two million women worldwide.

Obstetric fistulae in West Africa: patient perspectives.

OBJECTIVE: The objective of this study is to gain insight into the nature of obstetric fistulae in Africa through patient perspectives. STUDY DESIGN: At l'Hôpital Saint Jean de Dieu in Tanguieta, Benin, 37 fistula patients underwent structured interviews about fistula cause, obstacles to medical care, prevention, and reintegration by 2 physicians via interpreters. RESULTS: The majority of participants (43%) thought their fistulae were a result of trauma from the operative delivery. Lack of financial resources (49%) was the most commonly reported obstacle to care, and prenatal care (38%) was most frequently reported as an intervention that may prevent obstetric fistulae. The majority (49%) of the participants requested no further reintegration assistance aside from surgery. CONCLUSION: Accessible emergency obstetric care is necessary to decrease the burden of obstetric fistulae in Africa. This may be accomplished through increased and improved health care facilities and education of providers and patients.

Urinary symptoms and quality of life in women following urogenital fistula repair: a long-term follow-up study.

Using the Bristol Female Lower Urinary Tract Symptom questionnaire, we have investigated urinary and sexual symptoms and quality of life in a group of 31 women 50 months (median) after successful repair of urogenital fistula. All had undergone urodynamic investigation prior to their repair surgery, and only 36% had normal findings. Almost all women reported one or more symptoms, and for 65%, these caused at least 'a bit of a problem', although 87% said that their urinary symptoms had little or no impact on their quality of life. Symptoms were similar in urethrovaginal and vesicovaginal fistulae and were not significantly associated with prior functional abnormality.