PP-35 Support for young carers and young adult carers during terminal illness and bereavement: insights from a scoping survey in the UK
Year: 2026
Type: conference-paper
Study design: Observational Study
Abstract: Introduction Children and young people often take on caregiving roles for terminally ill relatives, yet they do not always receive the support they need. Aims This study explored the cross-sector support provided to current and bereaved young carers and young adult carers in the UK, including gaps and challenges in support provision, to help inform improvements to the available support. Methods A web-based scoping survey of professionals with experience of supporting young carers (< 18) or young adult carers (18-25) during terminal illness or in bereavement. The survey was distributed via relevant organisations and networks in the sector using digital channels such as emails, newsletters and social media. Results A total of 106 professionals from 90 different organisations/services completed the survey, with most organisations identified as young carers charities/NGOs (36.7%), palliative care (15.6%) or bereavement services (13.3%). Support focussed primarily on educational and pastoral needs at e.g. school (n=80.0%) and emotional aspects of preparing for death (n=75.6%). Support with the practical aspects of caregiving and preparing for death was less common (37.8% and 45.6%, respectively). Most respondents (76.9%) identified groups of young carers/young adult carers with particular challenges to accessing support, especially those who are neurodivergent (78.8%), are from lower socio-economic Backgrounds (76.3%), have mental health conditions (72.5%) or are from refugee/migrant families (67.5%) or minority ethnic/faith communities (62.5%). The most common challenges in delivering support included access to funding (64.2.%) and specialist support to refer on to (60.4%), lack of staffing/volunteer capacity (52.8%) and the inability to provide transport to make services accessible (51.9%). Conclusion Findings highlight support gaps related to practical aspects of caregiving and preparing for death, inequities in access to support and systemic challenges to support provision. Impact Findings can inform policy and service development to improve the support for young carers and young adult carers.
Language: English
Topic: Family Support in Illness
Subfield: Sociology and Political Science
Field: Social Sciences
Domain: Social Sciences
Open Access status: gold
OpenAlex ID: W7134055486
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