“I have to be strong”: A qualitative study of parental bereavement experiences in Uganda following the death of their baby

Abstract

Background

The death of a child is profoundly distressing for parents, often leading to acute grief and psychological complications. Most bereavement research is from high-income countries, with limited generalisability to low- and middle-income contexts where 98 % of newborn deaths occur. We explore the experiences of parents in Uganda following the death of their baby.

Methods

Qualitative interviews were conducted with 11 bereaved parents whose newborn participated in the OMWaNA trial and died while enrolled or shortly thereafter. In-depth interviews explored the experience of bereavement, the psychosocial impact, and economic consequences. Data were analysed using a deductive thematic approach.

Results

The death of a baby was consistently associated with parental stress, information delays, and uncertainty regarding the cause of death. While respondents reported a period of acute grief, many relied on their faith and social support to cope. Expectations for bereavement care from health professionals were low and instead parents focused on health professionals’ efforts to keep their baby alive and advice regarding future pregnancies. Despite financial precarity, costs and loss of income, many parents appeared comforted that they had done all they could to ensure the baby’s survival.

Conclusion

These findings illustrate the importance of understanding parental bereavement in different settings and circumstances. Rather than health worker-led models of active bereavement care, respondents relied on social support, their faith, and a focus on future pregnancies to ‘become strong.’ Further research to understand the longer-term impact of bereavement, men’s experiences and coping strategies could inform more contextually appropriate bereavement care.