Reflections on Identity: Narratives of Obstetric Fistula Survivors in North Central Nigeria (original) (raw)

I am a person but I am not a person": experiences of women living with obstetric fistula in the central region of Malawi

BMC pregnancy and childbirth, 2017

The consequences of living with obstetric fistula are multifaceted and very devastating for women, especially those living in poor resource settings. Due to uncontrollable leakages of urine and/or feces, the condition leaves women with peeling of skin on their private parts, and the wetness and smell subject them to stigmatization, ridicule, shame and social isolation. We sought to gain a deeper understanding of lived experiences of women with obstetric fistula in Malawi, in order to recommend interventions that would both prevent new cases of obstetric fistula as well as improve the quality of life for those already affected. We conducted semi-structured interviews with 25 women with obstetric fistula at Bwaila Fistula Care Center in Lilongwe and in its surrounding districts. We interviewed twenty women at Bwaila Fistula Care Center; five additional women were identified through snowball sampling and were interviewed in their homes. We also interviewed twenty family members. To ana...

Living with constant leaking of urine and odour: thematic analysis of socio-cultural experiences of women affected by obstetric fistula in rural Tanzania

BMC Women's Health, 2015

Background: Obstetric fistula is a worldwide problem that affects women and girls mostly in Sub Saharan Africa. It is a devastating medical condition consisting of an abnormal opening between the vagina and the bladder or rectum, resulting from unrelieved obstructed labour. Obstetric fistula has devastating social, economic and psychological effect on the health and wellbeing of the women living with it. This study aimed at exploring social-cultural experiences of women living with obstetric fistula in rural Tanzania. Methods: Women living with obstetric fistula were identified from the fistula ward at CCBRT hospital. Sixteen individual semi structured interviews and two (2) focus group discussions were conducted among consenting women. Interviews were transcribed verbatim and transcripts analysed independently by two researchers using a thematic analysis approach. Themes related to the experiences of living with obstetric fistula were identified. Results: Four themes illustrating the socio-cultural experiences of women living with obstetric fistula emerged from the analysis of women experiences of living with incontinence and odour. These were keeping clean and neat, earning an income, maintaining marriage, and keeping association. Women experiences of living with fistula were largely influenced by perceptions of people around them basing on their cultural understanding of a woman. Conclusion: Living with fistula reveals women's day-today experiences of social discrimination and loss of control due to incontinence and odour. They cannot work and contribute to the family income, cannot satisfy their husband's sexual needs and or bear children, and cannot interact with members of the community in social activities. Women experience of living with fistula was influenced by perceptions of people around them. In the eyes of these people, women who leak urine were of less value since they were not capable of carrying out ascribed social roles.

Unsettling the fistula narrative: cultural pathology, biomedical redemption, and inequities of health access in Niger and Ethiopia

Obstetric fistula, a maternal childbirth injury that results in chronic incontinence, affects an estimated one million women in the global south. In the course of media and donor coverage on this condition, fistula sufferers have been branded as 'child brides' who, following the onset of their incontinence, become social pariahs and eventually find physical and social redemption through surgical repair. This narrative framing pits the violence of 'culture' against the potency of biomedical salvation. Based on over two years of ethnographic research at fistula repair centres in Niger and Ethiopia, this paper challenges this narrative and argues that most women with obstetric fistula remain embedded in social relations, receive continued familial support, and, unexpectedly, experience ambiguous surgical outcomes. This paper interrogates the existing logics of the fistula narrative that have had the unintended effects of obscuring global structural inequalities and diverting attention away from systemic health access reforms.

“I feel myself incomplete, and I am inferior to people”: experiences of Sudanese women living with obstetric fistula in Khartoum, Sudan

Reproductive Health, 2019

Background Obstetric fistula is among the most devastating maternal morbidities that occur as a result of prolonged, obstructed labor. Usually, the child dies in a large number of the cases. Moreover, some of the women become infertile while the majority suffer physical, psychosocial and economic challenges. Approximately 5000 new cases of obstetric fistula occur in Sudan each year. However, their experiences are under documented. Therefore, this study aimed to shed light on their daily lives living with obstetric fistula and how they cope. Methods Using a qualitative study design, 19 women living with obstetric fistula were interviewed. The study took place in the fistula ward located in Khartoum hospital and the fistula re-integration center in Khartoum, Sudan. Thematic analysis approach was employed. Stigma and coping theories guided the data collection, analysis, and discussion of the findings. Findings Women in our study suffered a challenging physical life due to leakage of ur...

“I am alone and isolated”: a qualitative study of experiences of women living with genital fistula in Uganda

BMC Women's Health, 2015

Background: Globally, 2-3 million women are estimated to have a genital fistula, with an annual incidence of 50,000-100,000 women. Affected women remain silent within their communities, and their experiences often go unnoticed. Our objective was to explore the experiences of Ugandan women living with genital fistulas to understand how their lives were affected and how they coped with the condition. Methods: We conducted 8 focus group discussions (FGDs) with 56 purposively selected women with a genital fistula seeking treatment at Mulago Hospital, Uganda. Data were transcribed and analysed using qualitative content analysis. Results: Women with a fistula were living a physically changed and challenging life, living socially deprived and isolated, living psychologically stigmatised and depressed, and living marital and sexual lives that were no longer joyful. The women's experiences were full of life changes and coping strategies, and they used both problem-and emotion-focused coping strategies to deal with the challenges. They devised ways to reduce the smell of urine to reduce the stigma, rejection and isolation. While trying to cope, the women found themselves alone and isolated. Women either isolated themselves or were isolated by society, including by close relatives and their husbands. Their sex lives were no longer enjoyable, and generally, women felt a loss of their marital and sexual rights. Conclusion: Women with a fistula make adjustments in their lives to cope with the physical, social, psychological and sexual challenges. They use both problem-and emotion-focused coping to minimise their sense of isolation, as well as the rejection and stigma associated with fistula. These findings are essential for counselling patients, families and community members affected by a fistula. In similar contexts, health programmes should go beyond fistula closure and target communities and families to reduce the stigma and isolation faced by women with genital fistula.

I am nothing": experiences of loss among women suffering from severe birth injuries in Tanzania

BMC Women's Health, 2011

Background: Despite the increased attention on maternal mortality during recent decades, which has resulted in maternal health being defined as a Millennium Development Goal (MDG), the disability and suffering from obstetric fistula remains a neglected issue in global health. Continuous leaking of urine and the physical, emotional and social suffering associated with it, has a profound impact on women's quality of life. This study seeks to explore the physical, cultural and psychological dimensions of living with obstetric fistula, and demonstrate how these experiences shape the identities of women affected by the condition. Methods: A cross-sectional study with qualitative and quantitative components was used to explore the experiences of Tanzanian women living with obstetric fistula and those of their husbands. The study was conducted at the Comprehensive Community Based Rehabilitation Tanzania hospital in Dar es Salaam, Bugando Medical Centre in Mwanza, and Mpwapwa district, in Dodoma region. Conveniently selected samples of 16 women were interviewed, and 151 additional women responded to a questionnaire. In addition, 12 women affected by obstetric fistula and six husbands of these affected women participated in a focus group discussions. Data were analysed using content data analysis framework and statistical package for the social sciences (SPSS) version 15 for Microsoft windows. Results: The study revealed a deep sense of loss. Loss of body control, loss of the social roles as women and wives, loss of integration in social life, and loss of dignity and self-worth were located at the core of these experiences. Conclusion: The women living with obstetric fistula experience a deep sense of loss that had negative impact on their identity and quality of life. Acknowledging affected women's real-life experiences is important in order to understand the occurrence and management of obstetric fistula, as well as prospects after treatment. This knowledge will help to improve women's sense of self-worth and maintain their identity as women, wives, friends and community members. Educational programmes to empower women socially and economically and counselling of families of women living with obstetric fistula may help these women receive medical and social support that is necessary.

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

Reproductive Health

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.