Self-management and spina bifida: A systematic review of the literature |
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| Authors: | Kathleen J Sawin Rachel HF Margolis Monique M Ridosh Melissa H Bellin Jason Woodward Timothy J Brei Lynne Romeiser Logan |
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| Institution: | 1. Nurse Scientist, Department of Nursing Research and Evidence-Based Practice, Children''s Wisconsin, Corporate Center, Suite 140, 999 N 92nd St, Wauwatosa, WI, 53226, USA;2. Center Scientist, Self-Management Science Center, College of Nursing, University of Wisconsin-Milwaukee, USA;3. School of Social Work, University of Maryland, 525 W. Redwood Street, Baltimore, MD, 21201, USA;4. Marcella Niehoff School of Nursing, Loyola University Chicago, 2160 S. First Avenue, Building 115, Room 345, Maywood, PhD, RN, IL, 60153, USA;5. Assistant Professor of Internal Medicine and Pediatrics, University of Cincinnati College of Medicine, Division Developmental and Behavioral Peds, Cincinnati Children''s Hospital Medical Center, 3333 Burnet Ave MLC 4002, Cincinnati, OH, 45229, USA;6. Department of Pediatrics, Division of Developmental Pediatrics, Seattle Children''s Hospital and University of Washington School of Medicine, 4800 Sand Point Way NE O.C.840, Seattle, WA, 98105, USA;7. Department of PM&R, Upstate Medical University, 750 E Adams St, Syracuse, NY, 13210, USA |
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| Abstract: | BackgroundSelf-management is critical to optimizing the health of individuals with a chronic condition or disability and is, therefore, a central concept in individual and family-centered healthcare delivery. The purpose of this review is to report the state of the science of self-management for individuals with spina bifida (SB) from a lifespan perspective.ObjectiveThis review will summarize the (a) development and use of self-management skills and behaviors across the life span, (b) factors related to self-management behaviors, (c) development of generic or condition-specific measures of self-management used with a spina bifida population, and (d) development and/or outcomes of interventions to improve self-management in SB.MethodsThe search strategy was limited to primary research articles published between 2003 and 2019 and followed PRISMA guidelines. The databases searched included: PubMed, CINAHL, PsycINFO, Web of Science, Cochrane, and Google Scholar. Studies that addressed self-management concepts in individuals throughout the life span and published in English were included.ResultsThe search yielded 108 citations and 56 articles met inclusion/exclusion criteria. A systematic narrative synthesis was reported. The level of evidence identified was primarily Level III articles of good quality. Multiple demographic, environmental, condition and process factors were related to self-management behaviors. SB self-management instruments and intervention development and testing studies were identified.ConclusionsThis review provides a synthesis of the state of the science of self-management including factors related to self-management behaviors, preliminary evidence of instruments for use in SB, factors important to consider in the development and testing of future interventions, and gaps in the literature. |
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| Keywords: | Spina bifida Self-management Independence Myelomeningocele |
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