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

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          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.


          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.


          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.


          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 Rehabilitation
          • There 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.

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          Most cited references 82

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          Chronic disease self-management program: 2-year health status and health care utilization outcomes.

          To assess the 1- and 2-year health status, health care utilization and self-efficacy outcomes for the Chronic Disease Self-Management Program (CDSMP). The major hypothesis is that during the 2-year period CDSMP participants will experience improvements or less deterioration than expected in health status and reductions in health care utilization. Longitudinal design as follow-up to a randomized trial. Community. Eight hundred thirty-one participants 40 years and older with heart disease, lung disease, stroke, or arthritis participated in the CDSMP. At 1- and 2-year intervals respectively 82% and 76% of eligible participants completed data. Health status (self-rated health, disability, social/role activities limitations, energy/fatigue, and health distress), health care utilization (ER/outpatient visits, times hospitalized, and days in hospital), and perceived self-efficacy were measured. Compared with baseline for each of the 2 years, ER/outpatient visits and health distress were reduced (P <0.05). Self-efficacy improved (P <0.05). The rate of increase is that which is expected in 1 year. There were no other significant changes. A low-cost program for promoting health self-management can improve elements of health status while reducing health care costs in populations with diverse chronic diseases.
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            Self-management education programs in chronic disease: a systematic review and methodological critique of the literature.

            Self-management programs have been widely reported to help patients manage symptoms and contain utilization of health care resources for several chronic conditions, but to date no systematic review across multiple chronic diseases has been reported. We evaluated the efficacy of patient self-management educational programs for chronic diseases and critically reviewed their methodology. We searched MEDLINE and HealthSTAR for the period January 1, 1964, through January 31, 1999, then hand searched the reference section of each article for other relevant publications. We included studies if a self-management education intervention for a chronic disease was reported, a concurrent control group was included, and clinical outcomes were evaluated. Two authors reviewed each study and extracted the data on clinical outcomes. We included 71 trials of self-management education. Trial methods varied substantially and were suboptimal. Diabetic patients involved with self-management education programs demonstrated reductions in glycosylated hemoglobin levels (summary effect size, 0.45; 95% confidence interval [CI], 0.17-0.74); diabetic patients had improvement in systolic blood pressure (summary effect size, 0.20; 95% CI, 0.01-0.39); and asthmatic patients experienced fewer attacks (log rate ratio, 0.59; 95% CI, 0.35-0.83). Although we found a trend toward a small benefit, arthritis self-management education programs were not associated with statistically significant effects. Evidence of publication bias existed. Self-management education programs resulted in small to moderate effects for selected chronic diseases. In light of evidence of publication bias, further trials that adhere to a standard methodology would help clarify whether self-management education is worthwhile.
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              A review and synthesis of research evidence for self-efficacy-enhancing interventions for reducing chronic disability: implications for health education practice (part II).

              Chronic diseases such as arthritis, diabetes, and heart disease that cause pain, functional impairment, social and emotional dysfunction, and premature loss of wage earnings constitute a challenging problem for American society. In the absence of any effective cure for these frequently progressive conditions, the secondary prevention of complications, which requires a high degree of communication and cooperation between patient and clinician, and improving quality of life and functional capacity through better disease self-management becomes critical and are key objectives of Healthy People 2010. Part I of this two-part article described the common clinical features of chronic disease, the diverse disease management strategies used for alleviating pain and preventing disability, and the role of self-efficacy as a framework for intervention. This companion article identifies and synthesizes the key research evidence for educational interventions designed to enhance individual self-efficacy perceptions and presents implications for improving practices in patient education for chronic diseases.

                Author and article information

                Disabil Rehabil
                Disabil Rehabil
                Disability and Rehabilitation
                Informa UK Ltd.
                February 2014
                24 April 2013
                : 36
                : 4
                : 276-288
                1Bloorview Research Institute, Holland Bloorview Kids Rehabilitation Hospital Toronto, ONCanada
                2Department of Occupational Science and Occupational Therapy, Graduate Department of Rehabilitation Sciences, University of Toronto Toronto, ONCanada
                3Teaching & Learning Institute
                4Centre for Participation and Inclusion, Holland Bloorview Kids Rehabilitation Hospital ONCanada
                Author notes
                Address for correspondence: Sally Lindsay, Bloorview Research Institute, Holland Bloorview Kids Rehabilitation Hospital , Toronto, ON, M4G 1R8, Canada and Department of Occupational Science and Occupational Therapy, Graduate Department of Rehabilitation Sciences, University of Toronto, Toronto, 150 Kilgour Road, ON, M4G 1R8, Canada. E-mail: slindsay@
                © 2014 Informa Healthcare

                This is an open-access article distributed under the terms of the Creative Commons Attribution Noncommercial License which permits any noncommercial use, distribution, and reproduction in any medium, provided the source is credited.


                Health & Social care

                children, disability, adolescents, self-care, self-management


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