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A mixed-method systematic review evaluating interventions in paediatric rheumatology to address caregiver support and
K Kupiec1,2, A Najafi3, J Ledochowski4
1Great Ormond Street Hospital NHS Foundation Trust, Great Ormond Street, London, WC1N 3JH, UK. k.kupiec@ucl.ac.uk.
Insights
Caring for children with rheumatological conditions impacts families. This review found few interventions for caregivers, highlighting a need for more research to improve family well-being and quality of life.
Area of Science:
- Rheumatology
- Pediatrics
- Psychology
Background:
- Paediatric rheumatology conditions affect 6-7 million children globally, impacting their psycho-social well-being, quality of life, and family dynamics.
- These chronic autoimmune and auto-inflammatory conditions primarily affect the musculoskeletal system in children and young people (CYP).
- The review focuses on interventions designed for caregivers of CYP with these conditions.
Purpose of the Study:
- To systematically review interventions aimed at improving the well-being of caregivers for children and young people (CYP) with paediatric rheumatological conditions.
- To identify and appraise existing literature on caregiver interventions in this population.
Main Methods:
- A systematic review guided by the PRISMA 2020 statement and registered with PROSPERO (CRD42024524570).
- Inclusion criteria focused on studies targeting caregivers of CYP with rheumatological conditions and including interventions to enhance caregiver well-being.
- A mixed-method systematic review approach was used, with literature appraised by the Mixed-Method Appraisal Tool (MMAT).
Main Results:
- Out of 1065 identified studies, only 15 met the inclusion criteria for the final review.
- A narrative synthesis was employed to evaluate caregiver interventions, with a significant portion of literature lacking reported outcome measures.
- The review included quantitative, qualitative, and mixed-methods studies, as well as review articles and abstracts.
Conclusions:
- A family-centered approach is crucial for supporting caregivers and CYP with rheumatological conditions to enhance health outcomes and family functioning.
- There is a limited number of caregiver interventions currently implemented, despite evidence supporting their necessity.
- Further appraisal of caregiver interventions is needed to identify strategies that effectively improve the quality of life for families managing childhood chronic rheumatological conditions.
Background:
Paediatric rheumatology conditions are chronic autoimmune and auto-inflammatory conditions that affect predominantly the musculoskeletal systems of children and young people (CYP). About 6-7 million children are estimated to be affected worldwide. Having a rheumatological condition affects CYP as well as the wider family. Negative outcomes on psycho-social well-being, quality of life, family relationships and family functioning are commonly observed. The current review addresses interventions for caregivers of CYP with paediatric rheumatological conditions.
Methods:
The Preferred Reporting Items for Systematic Reviews and Meta-analyses (PRISMA) 2020 statement guided this review. Eligibility criteria were pre-defined and registered in the International Prospective Register of Systematic Reviews (PROSPERO). Articles were included if they (1) were targeted at caregivers of CYP with rheumatological conditions, and (2) included an intervention to improve well-being of caregivers.
Results:
Of 1065 identified studies, 15 studies were included in the final review. A mixed-method systematic review was conducted, and included literature was assessed using the Mixed-Method Appraisal Tool (MMAT). Quantitative, qualitative and mixed methods studies, as well as review articles and abstracts investigating the effectiveness of caregiver interventions were evaluated. A third of the identified literature did not report on outcome measures. A narrative synthesis was employed to appraise interventions tailored at caregivers.
Conclusions:
Despite evidence suggesting that a family approach is needed to support caregivers and CYP with rheumatological conditions as well as the wider family to improve health outcomes for the child, increase family functioning, reduce family conflict, and increase psycho-social well-being, only a small number of caregiver interventions have been carried out to date. The review highlights the need for caregiver interventions to be appraised to better understand what interventions yield results that lead to better quality of life for families who are caring for a child with a chronic rheumatological condition.
Trial Registration:
PROSPERO CRD42024524570.
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