Background Over 55 000 young adults aged 18–40 years old in England are living with life-limiting conditions (LLCs). This number is increasing. There is evidence of poor continuity of care for these young adults after transition to adult services, including the lack of short breaks/respite care. This lack of continuity for young adults and their family can ultimately result in carer burnout for families and deterioration in the young adult’s health.
Aim To gather the views of staff from children’s and adult hospices on the availability and challenges of providing services for young adults with LLCs.
Method An online survey was sent to children’s and adult hospices across the UK with support from Hospice UK and Together for Short Lives to gather information about challenges around transition, and the current and future provision for young adults. Ethical approval was granted by the Faculty of Health and Social Care Research Ethics Committee. The study was funded by Liverpool Clinical Commissioning Group.
Results Thirteen children’s hospices and 63 adult hospices responded (n=76); estimated response rates of 25% and 37% respectively. Findings indicate clear gaps and challenges in provision: lack of funding and capacity to develop services; lack of existing developmentally-appropriate services; perceived lack of a skilled and confident adult hospice workforce to support young adults who have complex care needs; and the need for better integrated working between children’s and adult hospices, and other services. Findings also revealed excellent examples of hospice provision and integrated working.
Conclusions Improved communication and integration is vital to the development of hospice provision that meets the needs of young adults with LLCs and their families. There is also the need to gain young adults’ perceptions and opinions on their wishes for care and services.
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