Parents' experiences of care and support after stillbirth in rural and urban maternity facilities: a qualitative study in Kenya and Uganda

Abstract

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.

Exploring the Social Networks of Women Bereaved by Stillbirth: A Descriptive Qualitative Study

“…The findings of this study confirm earlier studies that have reported that bereavement leads to relationship changes [7,8,10]. The factors that influenced relationship changes in this study: shame [5,13], the unmet expectation of support [2] and mistrust [2,10] have been confirmed separately by other studies. Of the three factors that influenced the participants' social networks, shame/stigma has received the most attention in stillbirth research.…”

“…Similar to earlier studies [2,10], our findings also suggest that women rely more on family networks than any other types of relationships. In stillbirth bereavement, women may have no other choice but to rely on their family and existing social networks due to stigma and lack of social recognition of stillbirth loss.…”

“…Of the three factors that influenced the participants' social networks, shame/stigma has received the most attention in stillbirth research. In response to perceived/anticipated shame, women may try to conceal the loss [5,13], leading to relationship changes [2,10]. Consistent with earlier studies [5,6], we found that our participants employed strategies such as relocating or observing prolonged mourning to avoid shame, but this resulted in relationship loss or stagnancy.…”

“…The loss of a baby to stillbirth is a devastating and traumatic experience for women [1,2]. However, women do not just lose a baby when they experience stillbirth.…”

“…However, in stillbirth bereavement, mothers may feel unsupported and isolated [9,11]. As a result of social withdrawal due to stigma, women's social networks may become smaller, disconnected, or underresourced [10][11][12] and their family may emerge as the primary source of support [1,2]. However, the social ramifications of stillbirths extend beyond the family [1,13].…”