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.

'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.