Caregiver experiences and needs in pediatric rheumatic disease: a mixed-methods systematic review protocol

Understanding the genuine experiences and requirements of caregivers and implementing targeted interventions can have a positive impact on the physical and mental well-being of caregivers with children diagnosed with rheumatic diseases, ultimately reducing their burden and enhancing their quality of life. While there has been a gradual increase in research in this area in recent years, there remains a gap in the evidence that comprehensively and systematically reflects the actual experiences and needs of caregivers. We will employ a mixed-methods approach to evaluate the real-life experiences and requirements of caregivers for children diagnosed with rheumatic diseases to provide insights for both research and clinical interventions. METHODS AND ANALYSIS: All types of studies (quantitative, qualitative, and mixed-methods) involving caregivers of children aged 0 to 18 with rheumatic diseases will be included. We will conduct a comprehensive search across multiple databases, including MEDLINE (PubMed), Embase (Ovid), PsycINFO (Ovid), CINAHL (EBSCO), Cochrane Central Register of Controlled Trials (CENTRAL), CNKI, WanFang, and VIP, as well as the grey literature, to identify primary studies published in either English or Chinese since 2000. Two independent reviewers will conduct the selection process and cross-check the data extraction. The focus of interest will be on understanding the experiences and needs of caregivers for pediatric rheumatic disease patients. In our systematic review, we will employ the 2018 version of the Mixed Methods Assessment Tool (MMAT) to evaluate study quality, and we will apply a convergent integration approach to synthesize the data.

Ethical approval is not needed, as no primary data will be collected. The results will be made available through a peer-reviewed publication.

PROSPERO 42023465302.