Review of parental activation interventions for parents of children with special health care needs.

BACKGROUND: A large number of U.S. children are identified as having special health care needs (CSHCN). Despite parents' central role in managing their child's needs, many parents report difficulties in navigating service systems, finding information about their child's condition, and accessing health care and community resources. Therefore, there is a need for interventions that "activate" parents of children with special health care needs to increase their knowledge, skills, and confidence in managing, coordinating, and advocating for their child's needs. This study sought to review the existing literature and examine the effects of parent support interventions that focus on parental activation either in part or whole, on child, parent, or family outcomes. Specific aims included (a) summarizing the nature and content of interventions; (b) describing changes in relevant outcomes; (c) identifying limitations and making recommendations for future research.

METHODS: Following electronic databases were searched: MEDLINE, EMBASE, PsycINFO via ProQuest, PubMed, Cumulative Index to Nursing and Allied Health via EBSCO, Education Resources Information Center (ERIC) via ProQuest, The Cochrane Library (Cochrane Database of Systematic Reviews, Cochrane Central Register of Controlled Trials, Cochrane Methodology Register), and Google Scholar. Twenty-two studies were selected, data were extracted, and quality was assessed using standardized procedures.

RESULTS: Five intervention categories were identified: parent-to-parent supports, psycho-educational groups, content-specific groups, community health worker model, and self-management-based interventions. Although most studies showed positive effects of the intervention, evidence was inconsistent for parental outcomes such as self-efficacy, confidence, strain, depression, and perceived social support. Evidence was more consistent in showing improvement in parent coping and in use of community-based services and resources.

CONCLUSIONS: There is a need to boost active ingredients of interventions that specifically target enhancing parent skill sets relevant to areas of self-efficacy, confidence, and empowerment. Future studies must also adapt intervention and study design to recruit socioeconomically vulnerable families.