SP-08 It takes a village – understanding the support that children and young people want and need when an adult is dying or has died

Introduction Families need information on how best to support children and young people when their significant adult is terminally ill or has died. Children and young people less prepared for the death of a significant adult are at increased risk of adverse outcomes in bereavement. However, there is a scarcity of evidence-based resources for families and professionals around this issue.

Aims This project aimed to develop evidence-based resources for families and professionals when an adult has a terminal illness or has died, in collaboration with children and young people who are facing or have faced bereavement, childhood bereavement experts and expert clinicians.

Methods Evidence-based resources were informed by a systematic review and empirical research studies with children, parents, professionals, and funeral directors. Resources for families were refined through iterative feedback cycles following a focus group with bereaved young people (n=5) and sequential survey (n=16), and collaboration with young people and adults with lived experience (n=18), children’s counsellors (n=8) and individuals providing bereavement care (n=10).

Results A suite of resources for families and professionals supporting young people when an adult is dying or has died were developed. This included six webpages1–6 and two booklets7 8 for families, and one webpage9 for professionals.

Conclusion Information for families can help ensure adults feel equipped and supported to prepare young people for the end-of-life experience and bereavement. Additionally, equipping professionals with knowledge on how best to support families impacted by terminal illness has the potential to prevent adverse outcomes for children in later life.

Impact Since publication of the resources, the webpages have been viewed over 28,600 times, and the booklets have been downloaded or ordered 346 times. On average 94.7% of respondents to an optional online survey (n=96) found the content useful.