Teenagers' and parents' views on a short-break service for children with life-limiting conditions: A qualitative study

Veronica Mary Swallow, Tracey Forrester, Ann MacFadyen

Research output: Contribution to journalArticlepeer-review

17 Citations (Scopus)

Abstract

Few opportunities exist outside the home for children and teenagers with life-limiting conditions to have a break in a setting specifically designed and adequately staffed and resourced to meet their complex clinical, practical and emotional needs; until recently provision focused primarily on providing respite for parents/carers. Based on policy recommendations, a short-break service was established with the aim of working in partnership with families and voluntary and statutory agencies to provide a fun break for children and teenagers with life-limiting conditions and complement the range of services available. This qualitative study used interviews and focus groups to determine teenagers’ and parents’ views of the service. Three themes emerged: accessibility and communication; needs and boundaries; and shaping the service. Teenagers enjoyed regular planned residential breaks, access to skilled staff and bespoke facilities to support their needs, opportunities to meet others with life-limiting conditions and fun time away from home, thereby giving parents peace of mind, a regular planned break from care-giving, opportunities to meet other parents and to spend exclusive time with their other children. If specialist short-break services become part of the national range of services available, children and teenagers with life-limiting conditions and their parents and siblings could all benefit.
Original languageEnglish
Pages (from-to)257-267
JournalPalliative Medicine
Volume26
Issue number3
DOIs
Publication statusPublished - Apr 2012

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