Self-management interventions for children and young people with sickle cell disease: A systematic review

Poku, Brenda A.; Atkin, Karl Michael; Kirk, Sue

Abstract

AbstractBackgroundIncreasing numbers of interventions are being developed to support self‐management for children and young people (CYP) with sickle cell disease (SCD), but no systematic review has systematically synthesized this evidence regarding their characteristics, effectiveness, acceptability and feasibility for all published intervention types.MethodsThe Joanna Briggs Institute guidelines for mixed‐method reviews were followed. A systematic search of eight databases and key journals was conducted from their inception to November 2021. Primary research of self‐management interventions targeting CYP with SCD aged 8–24 years and reporting any health/social outcome and acceptability data were included. Design‐specific standardized critical appraisal instruments were used. Two independent reviewers screened and appraised the articles. A third reviewer resolved disagreements.ResultsOf 1654 articles identified, 38 studies were included. Methodological quality was moderate. Most studies evaluated SCD education, psycho‐behavioural, psychosocial and skills training and/or social support interventions. They appear to demonstrate short‐term improvements in knowledge, social functioning and medical adherence outcomes. Interventions that were multifaceted in content, combined technological platforms and in‐person group‐based formats and involved peers, family and care providers were more acceptable and effective. The long‐term impact of interventions was limited, including CYP's involvement in the intervention development and implementation.ConclusionsThere is inconclusive evidence for any self‐management programme. Nonetheless, support from family, peers and care providers appears to be important for self‐management interventions' effectiveness and acceptability. Future research needs to prioritize CYP involvement in both intervention design and delivery, their wider social context and include CYP with SCD from non‐Black backgrounds.Patient and Public ContributionThree young people with SCD recruited acted as the review advisors. They were formally trained in the review process and involved in every aspect of the review: the design, conduct and interpretation of the findings. CYP involvement in the interventions' development and implementation was analysed as part of the review. This systematic review was conducted as part of a wider research project titled: Understanding fatigue experiences of CYP with SCD to guide the co‐development of a fatigue self‐management intervention. Two of the young advisors involved in the review were also involved in the development of the project funding application.

• Journal Article Type: Review
• Acceptance Date: Dec 11, 2022
• Online Publication Date: Jan 3, 2023
• Publication Date: 2023-04
• Deposit Date: Apr 27, 2023
• Publicly Available Date: May 2, 2023
• Journal: Health Expectations
• Print ISSN: 1369-6513
• Electronic ISSN: 1369-7625
• Publisher: Wiley
• Peer Reviewed: Peer Reviewed
• Volume: 26
• Issue: 2
• Pages: 579-612
• DOI: https://doi.org/10.1111/hex.13692
• Keywords: Children; interventions; self-care; self-management; sickle cell disease; strategies; young people
• Public URL: https://nottingham-repository.worktribe.com/output/20003741
• Publisher URL: https://onlinelibrary.wiley.com/doi/10.1111/hex.13692
• Additional Information: Received: 2022-09-05; Accepted: 2022-12-11; Published: 2023-01-03