Systematic Review of Parental Activation and Related Interventions for Parents of Children With Special Health Care Needs

PURPOSE: To systematically review and appraise the research literature on parental activation and other parent-support interventions for parents of children with special health care needs (CSHCN) and to evaluate effectiveness of interventions on parents’ ability to manage their child’s health care.

BACKGROUND: CSHCN require comprehensive, coordinated care for optimal health outcomes. Despite caregivers’ central role in managing their children’s needs, caregivers receive little guidance in navigating the health care system and finding information related to their child’s condition and care choices.

Therefore, there is a need for accessible and effective interventions that “activate” these parents to increase their knowledge, skills, and confidence in coordinating their child’s health care needs. Little is known about the effectiveness of these interventions or whether existing interventions influence parental activation in any way.

DESIGN: Systematic review of research using PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines

DATABASESP: Using search terms identified using the PICO (patients, intervention, comparison, outcomes) model, we searched the following electronic databases: Medline, EMBASE, PsycINFO via ProQuest, PubMed, CINAHL via EBSCO, ERIC via ProQuest, and The Cochrane Library. We also manually searched the tables of contents of key journals such as Child: Care, Health and Development, Children’s Health Care, and Journal of Pediatric Psychology.

SELECTION CRITERIA: Studies were included if they (1) recruited caregivers of a CSHCN, as defined by the U.S. Maternal and Child Health Bureau; (2) evaluated an intervention, that, either in whole or in part, focused on training or educating parents to manage or coordinate their child’s health and social service needs, and/or navigate pediatric service systems, and/or acquire advocacy skills to use within service systems, and/or communicate and work effectively with health care professionals and providers, and/or locate and utilize community resources; and (3) focused on an intervention delivered in a community setting. Once eligibility was determined, data were extracted from each article, and quality of studies was assessed by two independent reviewers using standardized forms. Accuracy of data extraction and quality appraisals was verified by a third reviewer.

RESULTS: Twenty studies were selected for inclusion; 12 were randomized controlled trials, 5 used quasi-experimental designs, and 3 used a preexperimental design. Five intervention categories were identified: parent-to-parent support interventions, psychoeducational groups focusing on family stress and coping, diagnosis- or content-specific educational groups, community health worker model, and self-management– and self-efficacy–based interventions.

There was wide variation in the effectiveness of these intervention strategies. Although most studies showed positive trends in favor of the intervention being examined and in the use of community-based services, the evidence was inconsistent for parent outcomes such as self-efficacy, confidence, sense of empowerment, caregiving strain, depression, anxiety, perceived social support, and family functioning.

DISCUSSION: Methodological limitations of these research studies provide insight into how best to implement future research and alternative interventions for parents with CSHCN. There is a strong need for research studies that creatively adapt intervention and study design to accommodate socioeconomically vulnerable families.

IMPACT STATEMENT: The number of CSHCN in the United States is steadily increasing. To serve these families better, and in line with principles of family-directed care, occupational therapists need to understand different parent-support interventions and their comparative effectiveness.