Short break and emergency respite care: what options for young people with life-limiting conditions?

Mitchell, Tracy K ORCID: 0000-0003-0014-8016, Knighting, Katherine, O'Brien, Mary R and Jack, Barbara A (2016) Short break and emergency respite care: what options for young people with life-limiting conditions? INTERNATIONAL JOURNAL OF PALLIATIVE NURSING, 22 (2). pp. 57-65.

Text Mitchell et al IJPN 2015.57.3 Manuscript DEC 15 11.3.22.doc - Author Accepted Manuscript Download (136kB)

Abstract

<h4>Background</h4>Service providers face difficult decisions about how best to develop services for the increasing numbers of young people with life-limiting conditions who require palliative care.<h4>Objective</h4>To explore alternative short break and emergency respite care options to children's hospice care.<h4>Methods</h4>A two-phase evaluation with young people, families and professionals. Phase 1: qualitative semi-structured interviews and focus groups (n=53). Phase 2: mixed-method survey (n=82), qualitative findings only.<h4>Results</h4>There were few, or no, appropriate short break and emergency respite care alternatives when children's hospice care was not available that can meet the need of young people with life-limiting conditions, creating anxiety for children's hospice users and those leaving the service as a result of reaching transition age or through no longer meeting the children's hospice eligibility criteria.<h4>Conclusion</h4>Access to appropriate short break and emergency respite care is required to prevent lifelong negative consequences for young people with life-limiting conditions, their family and society. Research is undoubtedly required to explore the impact and outcomes of children's hospice discharge for young people and their family. Particular attention should be paid to the lack of services for an increasing population making the transition from children's hospices.

Item Type:	Article
Uncontrolled Keywords:	Young people, Life-limiting conditions, Palliative care, Short breaks, Respite care, Transition
Divisions:	Faculty of Health and Life Sciences Faculty of Health and Life Sciences > Institute of Population Health
Depositing User:	Symplectic Admin
Date Deposited:	15 Mar 2022 16:36
Last Modified:	18 Jan 2023 21:11
DOI:	10.12968/ijpn.2016.22.2.57
Related URLs:	Author Publisher
URI:	https://livrepository.liverpool.ac.uk/id/eprint/3150531