‘I don’t know how we coped before’: a study of respite care for children in the home and hospice
Article first published online: 12 NOV 2008
© 2008 The Authors. Journal compilation © 2008 Blackwell Publishing Ltd
Journal of Clinical Nursing
Special Issue: Children & Young Persons
Volume 17, Issue 23, pages 3196–3204, December 2008
How to Cite
Eaton, N. (2008), ‘I don’t know how we coped before’: a study of respite care for children in the home and hospice. Journal of Clinical Nursing, 17: 3196–3204. doi: 10.1111/j.1365-2702.2008.02630.x
- Issue published online: 12 NOV 2008
- Article first published online: 12 NOV 2008
- Accepted for publication: 7 August 2008
- respite care;
Aim and objective. To describe the experiences of families, whose children have life-limiting and life-threatening conditions and who have complex healthcare needs, of receiving respite care at home or in a hospice.
Background. Respite provision is an extremely important service in assisting families to cope with the extra stresses and problems of coping with children with complex healthcare needs. There are different issues when the venue is home or a hospice.
Design. Semi-structured interviews were carried out with families of children with complex healthcare needs, receiving respite care at home or in a hospice.
Methods. A convenience sample of 11 families was interviewed using an interview schedule, exploring their experiences of the service and their views on the service.
Results. The areas of concern identified as significant to all the families were referral to respite service, service organisation, communication, relinquishing control to respite carers and satisfaction with service.
Conclusion. Within the provision of respite care, there needs to be more overt referral systems and criteria, negotiation of appropriate roles, continuity of care, regular assessment of need and acknowledgement of the difficulty, which parents have in relinquishing control to respite carers.
Relevance to clinical practice. High-quality respite care for families involves more than just organising a respite session. Healthcare professionals organising and providing care could manage a service more effectively, if taking the above issues into consideration.