A mixed-method systematic review evaluating interventions in paediatric rheumatology to address caregiver support and well-being.

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.