Respite Care for Children with Complex Care Needs: A Literature Review.

Study Aim/Purpose:  This study aimed to identify and summarize findings from qualitative research on parental perceptions and evaluation of respite care services for their children with complex needs.

Summary of Methods:   The authors conducted a systematic search of research conducted from 2010-2019, using six databases: Medline, Cumulative Index of Nursing and Allied Health Literature (CIHAHL), EMBASE, PsychINFO, Applied Social Science Index & Abstracts (ASSIA) and Web of Science. Studies were included  if they were English-language, peer reviewed, looked at the experience of respite from the perspective of parents of children with complex needs, and included parental input to evaluate respite services using qualitative methods. Using the key words “life limiting/complex care,” “children,” and “respite,” a large number of studies were initially selected by the authors. After reviewing each study’s title and abstract for relevance, the search was narrowed to 99 articles. Of these, only eight studies were found to meet the review criteria. These studies were summarized in three thematic areas: finding suitable respite care services, the benefits of respite for the family, and barriers to accessing respite.

Summary of Key Results:   Respite services discussed in the reviewed literature included both formal and informal care, in- and out-of-home respite services, and services administered by government and voluntary organizations. With regard to finding suitable respite services for their child, parents reported that they initially struggled with the idea that they needed respite and if they sought it then they struggled to find an appropriate program. Across all types of respite, parents reported that, in order to feel confident using respite, it was important to know that their child would be well cared for by competent and experienced staff. Parents also cited consistent program staffing and a taking a good initial history as program characteristics that made them more comfortable with using respite.

With regard to benefits of respite care for parents, the most commonly discussed benefits were time to rest, sleep and “space and time” to care for their other children. Also discussed was the time respite offered them with friends, staff, and other parents in similar situations. Parents reported that the benefits for their children while in respite included opportunities for social interactions with peers and engagement in varied activities.

Many barriers to using and accessing available respite care for these families were identified, including a lack of funding, limited program hours, lack of specialized equipment for their child, strict program eligibility criteria, and lack of flexible options to meet the children’s changing needs. Some parents also found that the time and travel required to get to the program site presented barriers. Although these were recurrent issues, when services were available and utilized, families valued them greatly.

Limitations of Studies Reviewed (as cited by authors):   The authors did not discuss limitations of the literature search methodology or of the studies reviewed.

Authors’ Discussion/Conclusions:  The authors note that the caring for children with complex needs requires specialized education, diverse skills, and recognition of the fact that children’s needs change as they grow and develop. With regard to program recommendations, the authors suggest an approach that utilizes multi-disciplinary providers with experience working with children with complex needs. They also highlight the need for more qualitative research to understand not only parental views but also the respite experiences and perspectives of the children and their siblings.