PP-47 Supporting young/young adult carers at the end of life and into bereavement: exploring the experiences and perspectives of bereaved young people and the professionals who support them

Introduction Family carers play an essential role in caring for terminally ill relatives. However most evidence relates to adult experiences, with much less known about the experiences of young carers and young adult carers. Aims This research aimed to investigate the experiences, support needs and support provision for young/young adult carers when caring at the end of life and during bereavement. Methods This mixed-Methods study comprised: An online cross-sectional open survey of statutory, voluntary and community sector professionals/volunteers working with current or bereaved young/young adult carers (n=106). Three focus groups with bereaved young/young adult carers (n=9); two groups with professionals working with current and/or bereaved young/young adult carers (n=8). This presentation describes qualitative findings on challenges/support needs, following thematic analysis of free-text survey data and focus groups transcripts. Results Current and bereaved young/young adult carers face multiple challenges and support needs, reflecting three main themes; Caring at the end of life; navigating bereavement; and managing daily life, relationships and support. When caring, young/young adult carers struggle with lack of emotional and practical preparedness for death, caregiver burden and changing roles within the family. Post-bereavement they experience complex emotions relating to loss of relationship and caring role/identity, feelings of guilt, alongside changes to living situation, family roles and difficulties dealing with administrative/practical tasks. Pre and post-bereavement young carers experience difficulties opening up and seeking help and lack of understanding or support from family, peers and schools/colleges, whilst also struggling with school attendance and performance. For young adult carers, transitioning between education and work/unemployment also creates support gaps and needs unique to their age group, alongside a general lack of preparation for adult life. Conclusion/Impact Research highlights changes needed at policy and organisational levels to improve the informal and formal support available to young people when caring and bereaved.