Abstract

Background

There is evidence that the life expectancy for young people requiring palliative care is increasing. While the difficulties relating to the transition between children’s and adult services have been identified in the research literature and recognised in government policy, service transition in relation to children/young people with life-limiting conditions has been less well researched. Indeed for some young people there are no corresponding adult services to which to transfer. In relation to hospice support in the UK the picture is variable, with some childrens’ hospices applying strict age eligibility criteria and others continuing to offer support to young adults and their families. To date there has been a lack of research investigating how children’s hospices can continue to support young adults with life-limiting conditions and whether the type of support they provide needs to change both as a result of gaps in mainstream adult health and social care services but also due to the different needs of an adult population.  This study aims to examine this area and contribute to addressing this gap in research.

Aims

1. To explore how young adults perceive their needs for hospice support. 
2. To explore how parents perceive their needs for hospice support.
3. To examine how prepared hospice staff feel to support young adults.
4. To identify the features of hospice support that young adults and parents (i) value and (ii) feel need to be improved to meet their needs.

Methods

A qualitative approach focusing on one hospice will be taken. Semi-structured interviews will be conducted with 15-20 young people, 5-10 parents/guardians and 5-10 members of the hospice staff (a total sample size of 25-40 participants).