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
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.
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.
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