A systematic review of self-management interventions for children and youth with physical disabilities

Abstract

Purpose:Evidence shows that effective self-management behaviors have the potential to improve health outcomes, quality of life, self-efficacy and reduce morbidity, emergency visits and costs of care. A better understanding of self-management interventions (i.e. programs that help with managing symptoms, treatment, physical and psychological consequences) is needed to achieve a positive impact on health because most children with a disability now live well into adulthood.Method:A systematic review of self-management interventions for school age youth with physical disabilities was undertaken to assess their effectiveness. Comprehensive electronic searches using international web-based reference libraries were conducted for peer-reviewed and gray literature published between 1980 and January 2012. Eligible studies examined the effectiveness of self-management interventions for children and youth between 6 and 18 years of age with congenital or acquired physical disabilities. Studies needed to include a comparison group (e.g. single group pre/post-test design) and at least one quantifiable health-related outcome.Results:Of the 2184 studies identified, six met the inclusion criteria; two involved youth with spina bifida and four with juvenile arthritis. The majority of the interventions ran several sessions for at least 3 months by a trained interventionist or clinician, had one-to-one sessions and meetings, homework activities and parental involvement. Although outcomes varied between the studies, all of the interventions reported at least one significant improvement in either overall self-management skills or a specific health behavior.Conclusions:While self-management interventions have the potential to improve health behaviors, there were relatively few rigorously designed studies identified. More studies are needed to document the outcomes of self-management interventions, especially their most effective characteristics for children and youth with physical disabilities.Implications for RehabilitationThere is some evidence to suggest that self-management interventions for children and youth with spina bifida and arthritis can improve self-management behaviors and health outcomes.Parents’ involvement should be considered in encouraging self-management behaviors at different stages of their child’s development.Much work is needed to explore the longer term implications of self-management interventions for youth with physical disabilities as well as the impact on health care utilization.

Self-management interventions for young people with chronic conditions: A systematic overview

“…Outcome measures or themes varied greatly between studies and even within SMI aiming at a specific diagnostic group, as also reported by others [19]. Health outcomes predominated, which is not surprising given the focus on medical management.…”

“…It seems that current evaluation studies tend to lose focus on what M a n u s c r i p t 14 interventions are aimed at, which also hampers conclusions about their effectiveness. Others have recognized this, too, and recommend use of a core set of measurement outcomes to evaluate SMI [19,22,123].…”

“…Newman and colleagues (2009) emphasize that a theory-based approach is needed to evaluate complex SMI, and recommend a more systematic comparison of different types of SMI [20]. Recent studies on SMI for people with chronic conditions in general [17,21] and for young people with physical disabilities [19] endorse this view, and it is recommended to standardize SMI evaluation by using a core set of outcomes [19,22].…”

“…Some SMI involved parents in the intervention or assessed family interaction or conflict. However, the notion that social context deserves attention when researching selfmanagement, has only recently gained more attention [14,17,19,[117][118][119][120].…”

“…This is even more pertinent to SMI in pediatric care [16,18,19]. Newman and colleagues (2009) emphasize that a theory-based approach is needed to evaluate complex SMI, and recommend a more systematic comparison of different types of SMI [20].…”