Needs and experiences of families after a sudden unexplained death in childhood: a qualitative study

Abstract

Background: Sudden unexplained death in childhood (SUDC) is a rare and devastating experience for families. In the UK, multi-agency investigation by police, health and social care of sudden, unexpected child deaths is a statutory requirement aiming to identify full causes for deaths. Families should be allocated bereavement keyworkers for support throughout the investigative process which can take several months. Previous research has focused on multi-agency investigation of sudden infant deaths, with little known about parents’ experiences for deaths of older children. Methods: Bereaved parents of children in the UK, aged 1 to 17 years who died from SUDC during 2018–2022, were recruited through SUDC-UK charity and their mailing list and word of mouth. Semi-structured interviews were conducted in 2023. Interview transcripts underwent thematic analysis. Results: Interviews were conducted with parents from 20 families across England, Scotland and Northern Ireland in 2023. Four key themes were identified: the importance of keyworkers, trauma-informed communication, proactivity from professionals and provision of medical screening for families. Keyworkers were valued by parents, but only 12/20 families had keyworkers allocated. Communication and language were important; families were often distressed by unexpected telephone calls particularly relating to post-mortem results. Parents felt they had to be proactive explaining about SUDC to professionals who lacked knowledge of the condition. Parents wanted medical screening to be proactively offered for their families. Conclusions: Every family must receive swift, proactive, knowledgeable communication from professionals, during and beyond the investigation into their child’s sudden unexpected death. This will help them through the process and mitigate the impact of poor communication on their grief. While all parents expressed that they wanted to find out why their child died, they also identified key improvements to the consistency and effectiveness of the investigation process.