‘I’m tired of justifying why my life has stopped’: A qualitative analysis of the experiences and support needs of young people caring at the end of life and into bereavement

Background: Family carers play an essential role in caring for terminally ill relatives, but evidence regarding the experiences of young/young adult carers is limited. Objectives: To explore the experiences and support needs of young/young adult carers when caring at the end of life and into bereavement, and identify ways of improving support. In the ‘Discussion’, we apply the Dual Process Model of coping with bereavement (DPM) to help conceptualise our findings. Design: A mixed-methods study comprising; an online survey of statutory, voluntary and community sector professionals/volunteers working with current or bereaved young/young adult carers ( n = 106); two focus groups with professional survey participants ( n = 8); three focus groups with bereaved young/young adult carers ( n = 9). Here, we describe our qualitative themes following reflexive thematic analysis of free-text survey and focus group data. Results: Our three main themes centre around; providing care at the end of life; navigating bereavement; and managing daily life and relationships. When caring, young/young adult carers struggle with a lack of emotional and practical preparedness for death, caregiver burden and changing roles and relationships within the family. Post-bereavement, they experience complex emotions relating to the death and the loss of their caring role/identity, alongside difficulties dealing with administrative/practical tasks and changes to living situations and family roles. Pre/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. Transitioning between education and work/unemployment creates support gaps and needs unique to young adult carers, alongside a general lack of preparation for adult life. Conclusion: Young/young adult carers experience multiple challenges and support needs, which can be usefully theorised using an adapted version of the DPM. Cross-sector changes, reflecting public health approaches, are needed to improve the informal and formal support available to young people when caring and bereaved.