'I don't know how we coped before': a study of respite care for children in the home and hospice

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. 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. Semi-structured interviews were carried out with families of children with complex healthcare needs, receiving respite care at home or in a hospice. A convenience sample of 11 families was interviewed using an interview schedule, exploring their experiences of the service and their views on the service. 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. 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. 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.