Susie Donnelly1, Molly Manning2, Hasheem Mannan3, Anthony G Wilson4, Thilo Kroll1. 1. Centre for Interdisciplinary Research Education and Innovation in Health Systems (IRIS), School of Nursing, Midwifery and Health Systems, University College Dublin, Dublin, Ireland. 2. School of Allied Health, Faculty of Education and Health Sciences, University of Limerick, Limerick, Ireland. 3. Department of Social Sciences, School of Liberal Education, FLAME University, Pune, India. 4. Centre for Arthritis Research, School of Medicine and Medical Science, Conway Institute, University College Dublin, Dublin, Ireland.
Abstract
BACKGROUND: As chronic illnesses, such as rheumatoid arthritis (RA), place an increased burden on health-care systems, the ability of individuals to self-manage these diseases is crucial. OBJECTIVE: To identify and synthesize the lived experience of self-management described by adults living with RA. DESIGN: A systematic search of five electronic databases (MEDLINE, CINAHL, EMBASE, PsycINFO and ASSIA) was undertaken to identify relevant studies. Data were extracted and quality-assessed using CASP guidelines. A meta-synthesis was conducted based on Thomas and Harden's thematic synthesis approach. RESULTS: The search identified 8423 publications. After removing duplicates, 6527 records remained of which 32 studies met the inclusion criteria. Quality of studies was moderate to high, yet a considerable lack of reflection on researcher bias was evident. Our analysis identified 28 dimensions of self-management RA across six domains: (a) cognitive-emotional, (b) behavioural, (c) social, (d) environmental, (e) physical and (f) technological. Cognitive-emotional experiences dominated the analysis. Renegotiating 'the self' (self-concept, self-esteem, self-efficacy) was a key focus of self-management among individuals with RA. CONCLUSION: Our findings highlight the focus of 'the self' as a central concern in the self-management of RA. Standardized self-management programmes may primarily focus on disease management and daily functioning. However, we suggest that personal biographies and circumstances should move to the fore of self-management support. REGISTRATION: PROSPERO International Prospective Register of Systematic Reviews 2018: CRD42018100450. PATIENT OR PUBLIC CONTRIBUTION: Patient and public involvement was not explicit in this review. However, three authors provided a patient perspective on the self-management of arthritis and autoimmune disease.
BACKGROUND: As chronic illnesses, such as rheumatoid arthritis (RA), place an increased burden on health-care systems, the ability of individuals to self-manage these diseases is crucial. OBJECTIVE: To identify and synthesize the lived experience of self-management described by adults living with RA. DESIGN: A systematic search of five electronic databases (MEDLINE, CINAHL, EMBASE, PsycINFO and ASSIA) was undertaken to identify relevant studies. Data were extracted and quality-assessed using CASP guidelines. A meta-synthesis was conducted based on Thomas and Harden's thematic synthesis approach. RESULTS: The search identified 8423 publications. After removing duplicates, 6527 records remained of which 32 studies met the inclusion criteria. Quality of studies was moderate to high, yet a considerable lack of reflection on researcher bias was evident. Our analysis identified 28 dimensions of self-management RA across six domains: (a) cognitive-emotional, (b) behavioural, (c) social, (d) environmental, (e) physical and (f) technological. Cognitive-emotional experiences dominated the analysis. Renegotiating 'the self' (self-concept, self-esteem, self-efficacy) was a key focus of self-management among individuals with RA. CONCLUSION: Our findings highlight the focus of 'the self' as a central concern in the self-management of RA. Standardized self-management programmes may primarily focus on disease management and daily functioning. However, we suggest that personal biographies and circumstances should move to the fore of self-management support. REGISTRATION: PROSPERO International Prospective Register of Systematic Reviews 2018: CRD42018100450. PATIENT OR PUBLIC CONTRIBUTION: Patient and public involvement was not explicit in this review. However, three authors provided a patient perspective on the self-management of arthritis and autoimmune disease.
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