‘I stayed with my illness’: a grounded theory study of health seeking behaviour and treatment pathways of patients with obstetric fistula in Kenya

Background: Obstetric fistula classic symptoms of faecal and urinary incontinence cause women to live with social stigma, isolation, psychological trauma and lose their source of livelihoods. There is a paucity of studies on the health seeking behaviour trajectories of women with fistula illness although women live with the illness for decades before surgery. We set out to establish the complete picture of women’s health seeking behaviour using qualitative research. We sought to answer the question: what patterns of health seeking do women with obstetric fistula display in their quest for healing? Methods: We used grounded theory methodology to analyse data from narratives of women during inpatient stay after fistula surgery in 3 hospitals in Kenya. Emergent themes contributed to generation of substantive theory and a conceptual framework on the health seeking behaviour of fistula patients. Results: We recruited 121 participants aged 17 to 62 years whose treatment pathways are presented. Participants delayed health seeking, living with fistula illness after their first encounter with unresponsive hospitals. The health seeking trajectory is characterized by long episodes of staying home with illness for decades and consulting multiple actors. Staying with fistula illness entailed health seeking through seven key actions of staying home, trying home remedies, consulting with private health care providers, Non-Governmental organisations, prayer, traditional medicine and formal hospitals and clinics. Long treatment trajectories at hospital resulted from multiple hospital visits and surgeries. Seeking treatment at hospital is the most popular step for most women after recognizing fistula symptoms. Conclusions: We conclude that the formal health system is not responsive to women’s needs during fistula illness. Women suffer an illness with a chronic trajectory and seek alternative forms of care that are not ideally placed to treat fistula illness. The results suggest that a robust health system be provided with expertise and facilities to treat obstetric fistula to shorten women’s treatment pathways

Women's Experiences of Care after Stillbirth and Obstetric Fistula: A Phenomenological Study in Kenya

Background Stillbirth and (obstetric) fistula are traumatic life events, commonly experienced together following an obstructed labour in low- and middle-income countries with limited access to maternity care. Few studies have explored women's experiences of the combined trauma of stillbirth and fistula. Aim To explore the lived experiences of women following stillbirth and fistula. Methods Qualitative, guided by Heideggerian phenomenology. Twenty women who had experienced a stillbirth were interviewed while attending a specialist Hospital fistula service in urban Kenya. Data were analysed following Van Manen's reflexive approach. Results Three main themes summarised participants' experiences: ‘Treated like an alien’ reflected the isolation and stigma felt by women. The additive and multiplying impacts of stillbirth and fistula and the ways in which women coped with their situations were summarised in ‘Shattered dreams’. The impact of beliefs and practices of women and those around them were encapsulated in ‘It was not written on my forehead.’ Conclusion The distress women experienced following the death of a baby was intensified by the development of a fistula. Health professionals lacked understanding of the pathophysiology and identification of fistula, and its association with stillbirth. Women were isolated as they were stigmatised and blamed for both conditions. Difficulty accessing follow-up care meant that women suffered for long periods while living with a constant reminder of their baby's death. Cultural beliefs, faith and family support affected women's resilience, mental health and recovery. Specialist services, staff training and inclusive policies are needed to improve knowledge and awareness and enhance women's experiences

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

Abstract 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

Additional file 1: of ‘I stayed with my illness’: a grounded theory study of health seeking behaviour and treatment pathways of patients with obstetric fistula in Kenya

Narrative guide. The set of questions used to guide the narrative interviews with the study participants. (DOCX 64 kb

Women's experiences of care after stillbirth and obstetric fistula: A phenomenological study in Kenya

BackgroundStillbirth and (obstetric) fistula are traumatic life events, commonly experienced together following an obstructed labour in low- and middle-income countries with limited access to maternity care. Few studies have explored women's experiences of the combined trauma of stillbirth and fistula.AimTo explore the lived experiences of women following stillbirth and fistula.MethodsQualitative, guided by Heideggerian phenomenology. Twenty women who had experienced a stillbirth were interviewed while attending a specialist Hospital fistula service in urban Kenya. Data were analysed following Van Manen's reflexive approach.ResultsThree main themes summarised participants' experiences: 'Treated like an alien' reflected the isolation and stigma felt by women. The additive and multiplying impacts of stillbirth and fistula and the ways in which women coped with their situations were summarised in 'Shattered dreams'. The impact of beliefs and practices of women and those around them were encapsulated in 'It was not written on my forehead'.ConclusionThe distress women experienced following the death of a baby was intensified by the development of a fistula. Health professionals lacked an understanding of the pathophysiology and identification of fistula and its association with stillbirth. Women were isolated as they were stigmatised and blamed for both conditions. Difficulty accessing follow-up care meant that women suffered for long periods while living with a constant reminder of their baby's death. Cultural beliefs, faith and family support affected women's resilience, mental health and recovery. Specialist services, staff training and inclusive policies are needed to improve knowledge and awareness and enhance women's experiences.Patient or public contributionA Community Engagement and Involvement group of bereaved mothers with lived experience of stillbirth and neonatal death assisted with the review of the study protocol, participant-facing materials and confirmation of findings