A group respite pilot project for children with special needs

Author(s): McGrane, C., Masson, N. and Martins, D.C.

Published In: Public Health Nursing, 38(6):1009-1014.

Study Aim/Purpose:  This paper describes feedback from caregivers and program staff on a pilot group out-of-home respite program for children with special needs, including those with physical, cognitive and/or developmental impairments. The pilot involved monthly four-hour out-of-home group respite care sessions for children with physical, cognitive and/or developmental impairment, as well as in-home visits. Nursing and physical therapy students staffed the program supervised by nursing and physical therapy faculty. Over one academic year, the program held monthly sessions which engaged the children in diverse activities tailored to their individual abilities.

Summary of Methods:  The pilot respite program had 23 children enrolled, ranging from 3 to 16 years of age. Parents provided registration forms on the first visit as the source of baseline data and the project team obtained qualitative feedback from parents and the staff on the benefits of the program for them. The authors do not discuss how the parental feedback was obtained, response rates, or how the themes and quotes were selected for inclusion in the findings.

Summary of Results:  The article includes several quotes from parents indicating that they were very pleased with the respite care sessions. Parents who used the out-of-home respite program reported that they were comfortable with and trusted the program staff and mentioned a sense of relief that they could leave their child with future nursing students who they felt were capable of meeting their child’s special needs. Example quotes indicated that parents also benefited. For example, a couple of parents indicated that they particularly appreciated spending time with the other parents they met through this program. Another benefit of the out-of-home respite that parents highlighted was the time they could spend with their other child engaging in activities that their child with special needs could not participate in. As an indicator of the program’s success, the authors also note that parents voluntarily returned for repeated sessions, though they were not required to do so.

In addition to the pilot respite program’s benefits described by parents, the authors report that nursing and physical therapy students anecdotally reported they liked the program and wanted it to expand. Students also described a sense of admiration for the parents who care for their children every day at home.

Study Limitations (as cited by authors):  None cited.

Authors’ Discussion/Conclusions:  With regard to the implications for practice, the authors suggest that the pilot be expanded and that programming for children with special needs should provide an opportunity for multidisciplinary coordination of care and therapeutic activities for the children and  address the respite needs of family caregivers. They recommend that future practice incorporate a research focus to identify best practices, including the identification of family caregiver needs and measures of child and caregiver health outcomes. The authors also suggest the need for continued qualitative research to understand  families’ and students’ experiences of respite services.