The impact on families of respite care in a children’s hospice program

Study Aim/Purpose: This study seeks to describe how parents viewed the strengths and limitations of the respite component of a children’s hospice program (Canuck Place, Vancouver, British Columbia) during its first 30 months of operation.

Summary of Methods: This was a qualitative study involving in-person interviews with 18 parents and completed mail surveys from 65 families. The questions focused on two topic areas: parents’ perceptions of how the respite program benefitted their child and family, and prepared them for the future. Responses were coded and summarized to identify common themes.

Summary of Results: Overall the study found that parents of children greatly value respite care and perceive a range of benefits to the ill child, the child’s siblings, and to themselves. Parents reported that their child benefitted “a lot” or “extensively” from respite care with specific benefits including the opportunity for relaxation and enjoyment, learning, socialization, and independence. Examples of benefits noted for the parents included: a break from the routine, a sense of freedom from responsibilities and worries, time for themselves and other family members, and learning from the staff and the experience of talking to other parents with children at the hospice. Parents also reported valuing the opportunity provided to prepare for their child’s death. While the majority of the parents were satisfied with their respite care experience, some said they did not receive enough time there, families from rural areas cited time and transportation barriers to access this service, and some parents wanted more flexibility in the way the respite care was scheduled for them.

Study Limitations (as cited by authors): None cited

Authors’ Discussion/Conclusions: The authors highlight three lessons that derive from this study. First, they state that respite care is needed both on its own and as a component of a full suite of hospice services, but the availability of such respite care is “virtually nonexistent in North America.” Second, the author emphasizes the critical need for in-home respite care and recommends that its availability should be supported and mandated by public policies and programs. Finally, she calls for research to better document the need for and outcomes of children’s respite services, including “to further examine the health and psychosocial benefits of respite care for families of children with life-limiting conditions.”