Background

• In the UK the number of 16–25 year olds living with life limiting illness has doubled in the past decade (Fraser et al., 2011).

• Nationally there is a lack of suitable respite provision for young adults with palliative care needs (King and Barclay, 2007, p201).

• An integrative literature review has been carried out to support development of a business case for a regional young adult short break unit in an adult hospice.

• Short break provision is seen as integral to children’s palliative care (Ling, 2012, p129) with many describing provision a “life line” (Jackson and Robinson, 2003, p105). Equivalent support does not exist in adult hospices.

• NICE Guidelines for Transition (2016) recommend developmentally appropriate care provision

Literature review-emerging themes Needs of parents:

• A break from complex and technical care is needed, to maintain well-being and enable time with other children

• A break enables parents to sustain care in the home

• Needs change over time-ageing parents and relatives, increasing complexity of care means less informal support available

• Parents struggle with trusting others to provide care.

Needs of young adults:

• Opportunities for valuable peer support

• Opportunity for social activities

• A break from family with opportunity to explore and increase independence from parents.

Significant paucity in primary research with young adults

Service delivery

• Significant differences between children’s and adult’s hospice care-transition is challenging

• Young adult short break models have high care needs and expensive staffing costs

• Adult hospices lack experience in complex care needs of young adults-significant training needs.

Conclusions

• Significant respite needs for parents

• Developmentally appropriate respite should be available

• Children’s hospices have often been the only provider able to meet these complex needs. Can adult hospices inherit this legacy for a new generation of young adults with palliative care needs surviving into adulthood?

• Further primary research with young adults needed.