Objective To explore parents' lived experiences of care and support following stillbirth in urban and rural health facilities. Design Qualitative, interpretative, guided by Heideggerian phenomenology. Setting Nairobi and Western Kenya, Kampala and Central Uganda. Sample A purposive sample of 75 women and 59 men who had experienced the stillbirth of their baby (≤1 year previously) and received care in the included facilities. Methods In-depth interviews, analysed using Van Manen's reflexive approach. Results Three main themes were identified; parents described devastating impacts and profound responses to their baby's death. Interactions with health workers were a key influence, but poor communication, environmental barriers and unsupportive facility policies/practices meant that needs were often unmet. After discharge, women and partners sought support in communities to help them cope with the death of their baby but frequently encountered stigma engendering feelings of blame and increasing isolation. Conclusions Parents in Kenya and Uganda were not always treated with compassion and lacked the care or support they needed after the death of their baby. Health workers in Kenya and Uganda, in common with other settings, have a key role in supporting bereaved parents. There is an urgent need for context and culturally appropriate interventions to improve communication, health system and community support for African parents.
Background Stillbirth is an extremely traumatic and distressing experience for parents, with profound and long-lasting negative impacts. Cultural beliefs and practices surrounding death vary considerably across different contexts and groups, and are a key influence on individual experiences, impacting grief, adjustment, and support needs. Few studies have explored cultural influences surrounding stillbirth in an African context. This study explored the influence of cultural beliefs and practices on the experiences of bereaved parents and health workers after stillbirth in urban and rural settings in Kenya and Uganda. Methods A qualitative descriptive study design was employed. Face to face interviews were conducted with parents (N = 134) who experienced a stillbirth (≤ 1 year) and health workers (N = 61) at five facilities in Uganda and Kenya. Interviews were conducted in English or the participants’ local language, audio-recorded and transcribed verbatim. Analysis was conducted using descriptive thematic analysis. Results Commonalities in cultural beliefs and practices existed across the two countries. Three main themes were identified: 1) Gathering round, describes the collective support parents received from family and friends after stillbirth. 2)‘It is against our custom’ addresses cultural constraints and prohibitions impacting parents’ behaviour and coping in the immediate aftermath of the baby’s death. 3) ‘Maybe it’s God’s plan or witchcraft’ summarises spiritual, supernatural, and social beliefs surrounding the causes of stillbirth. Conclusions Kinship and social support helped parents to cope with the loss and grief. However, other practices and beliefs surrounding stillbirth were sometimes a source of stress, fear, stigma and anxiety especially to the women. Conforming to cultural practices meant that parents were prevented from: holding and seeing their baby, openly discussing the death, memory-making and attending the burial. The conflict between addressing their own needs and complying with community norms hindered parents’ grief and adjustment. There is an urgent need to develop culturally sensitive community programmes geared towards demystifying stillbirths and providing an avenue for parents to grieve in their own way.
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 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 CEI group of bereaved mothers with lived experience of stillbirth and neonatal death assisted with review of the study protocol, participant facing materials and confirmation of findings.This article is protected by copyright. All rights reserved.
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