Qualitative accounts of young people, parents and staff involved with a purpose-designed, pilot short-break service for 18-24 year olds with life-limiting conditions

Purpose: Transition to adult health and social-care services is a time of great uncertainty for young adults with life-limiting conditions; due to improved management, many who would have previously died before they were 18 years old are now surviving into early adulthood. Nevertheless, few services exist to meet their specific needs for specialist short breaks away from home. The purpose of this research was to determine the views and perspectives of young adults, parents/carers and staff engaged with a purpose-designed, pilot short-break service for 18-24 year olds with life-limiting conditions. Data were gathered through qualitative individual or focus group interviews involving two young adults, four mothers and fifteen health or social-care staff associated with the service. Data were analysed using Framework Analysis. Principal results: Emergent themes: (i) The need for a specialist short-break service; (ii) Decision making when using or delivering the service; (iii) Staffing requirements for delivering the service; (iv) Challenges of financing the service; (v) Meeting the complex needs and preferences of young adults. The young adults described how they benefitted from access to specialist, age-appropriate, on-site clinical skills facilities and opportunities to socialise with peers. Mothers said they benefitted from time alone or with other family members in the knowledge that the specialist short break service met the needs and preferences of their child as they made the transition to adult services. However, all participants expressed concern about the future well-being of young adults when they left the service at 24 years old. Major conclusions: This study provides new information to inform ongoing development of short-break services for the increasing number of young adults with life-limiting conditions who are surviving longer than they would previously have done. This will help to ensure that UK services are responsive to users’ needs and preferences.