Advancing care and support for women and families after stillbirth or neonatal death in Kenya and Uganda: a feasibility study

Abstract

Background Approximately every 16 seconds a baby dies, before, during or shortly after birth globally. Over 98% of stillbirths and neonatal deaths occur in low- and middle-income countries, with over 75% in sub-Saharan Africa and South Asia. Alongside prevention, providing respectful and appropriate bereavement support to parents is a key global priority for equitable care and outcomes. Previous studies in sub-Saharan Africa, including Kenya and Uganda, demonstrate limited bereavement support in facilities and stigma surrounding perinatal death in communities. There is an urgent need for context-appropriate interventions to improve emotional and psychological support for bereaved parents in these settings. Objectives To assess the feasibility of implementation, and a full-scale effectiveness evaluation of a co-produced multicomponent intervention to improve perinatal bereavement support in Kenya and Uganda. Design A prospective, observational, mixed-methods feasibility study, using a pre- and post-cohort design. Community engagement and involvement was embedded throughout the research process. Setting Two tertiary urban maternity facilities and surrounding communities in Kenya and Uganda. Participants Postnatal women experiencing stillbirth or early neonatal death in the included facilities. Intervention Two components including (1) introduction of trained health worker ‘bereavement champions’ in facilities, focused on developing care for bereaved women and families through individual and collective action and (2) access to telephone peer support for women, post discharge, from trained peers in communities. Main outcome measures The primary feasibility outcome measures were recruitment and retention of women. Secondary outcomes included acceptability of the intervention and research processes, feasibility of data collection, characteristics of the proposed evaluation trial primary outcome measure and quality of implementation. Results Over the study period, November 2019 to December 2020, a total of 501 women experienced stillbirth or early neonatal death in the included facilities, 208 women consented to be contacted for participation in the study and 107 were recruited; 56 women experiencing usual postnatal care and 51 offered the study intervention. Despite the COVID-19 pandemic, recruitment was 89% of the target and 85% of participants completed the study. The intervention was implemented largely as planned and was generally acceptable to women, families, health workers and others involved. Key learning points included the need for education for a wider group of health workers to increase understanding of principles of effective bereavement support and involving more clinical leaders as bereavement champions, to add leverage for change in practice. Research processes and data collection tools, including the selected psychological measures, were also acceptable. Women and families welcomed the opportunity to participate in research to improve care. Limitations This study was impacted by COVID-19, which disrupted aspects of recruitment, intervention implementation and data collection. The focus on urban settings in both countries is a potential limitation to transferability of findings. Conclusions This study demonstrated the feasibility of implementation and of a larger-scale effectiveness evaluation of the co-produced multicomponent intervention. Learning from this feasibility study will be used to refine the intervention to improve context-appropriateness. Future work A pragmatic stepped-wedge cluster-randomised controlled trial, with parallel economic and process evaluations is proposed to assess the clinical and cost effectiveness of the intervention and explore future scale-up and sustainability. Funding This article presents independent research funded by the National Institute for Health and Care Research (NIHR) Global Health Research programme as award number GHR 16/137/53.