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

Palliat Med. 2012 Apr;26(3):257-67. doi: 10.1177/0269216311401947. Epub 2011 Apr 7.


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.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adolescent
  • Female
  • Focus Groups
  • Hospice Care / organization & administration*
  • Hospice Care / standards*
  • Humans
  • Interviews as Topic
  • Male
  • Parents / psychology*
  • Patient Satisfaction
  • Professional-Family Relations
  • Professional-Patient Relations
  • Psychology, Child*
  • Qualitative Research
  • Quality of Health Care
  • Respite Care / organization & administration*
  • Respite Care / standards*