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

Abstract

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 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 contribution: A 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.