Dilemmas in the provision of own-home respite support for parents of young children with complex health care needs: evidence from an evaluation

Author(s): Olsen, R. and Maslin-Prothero, P. (2001)

Published In: Journal of Advanced Nursing, 34 (5): 603-610

Study Aim/Purpose: To examine parent responses and effects of a nurse-led in-home respite support service for parents of young children with complex health care needs. 

Summary of Methods: This is a qualitative study involving interviews with 18 families. Parents were interviewed using semi-structured topic guides at three time points: immediately after their assessment (but before receipt of respite), 3 months later, and 12 months later. At the first interview parents were asked about their experience of the onset and/or diagnosis of health problems in their child, support available to each family, the kind of respite they required, and their expectations of the service. At the second interview, they were asked about the impact of the service on their lives and for feedback on the service. The third interview at one year reviewed parental experiences of the service over the year and asked about the extent to which the service had met their needs and contributed to family well-being. Responses were analyzed qualitatively, coding the interview transcripts and organizing the coded data into themes. 

Summary of Key Results: The service is described by parents as valuable and as meeting need for some but not all of the parents. Some parents wanted a different kind of respite service, offering more flexible and immediate support, rather than the current program which provides respite through pre-booked sessions that parents request 4-6 weeks in advance. Additionally, “while the large majority of parents described moderate or significant improvements in family well-being over the study period, only 5 of those attributed respite as having had some role in this.” Furthermore, most families cited the respite service as one of a range of factors they said lead to improved well-being. 

Study Limitations (as cited by authors): The authors recognize the exploratory nature of their qualitative research. 

Authors’ Discussion/Conclusions: The responses “demonstrated the diverse ways in which families wished to make use of respite support, both in terms of who they saw as the beneficiaries (e.g. themselves, the family, other siblings) and in terms of what they saw the time enabling them to do.” In discussing the practice implications of their findings, the authors state that “efforts should be made to ensure that respite support is offered in a more flexible and diverse set of ways to ensure that it is targeted and tailored to each family’s need for respite.”