Caregiver Experiences and Needs in Paediatric Rheumatic Disease: A Mixed-Methods Systematic Review Protocol

Abstract

Introduction We will employ a mixed-methods approach to evaluate the real-life experiences and requirements of caregivers for children diagnosed with rheumatic diseases, with the aim of providing insights for both research and clinical interventions. 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, 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. Methods and analysis 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. In our systematic review, we will employ a mixed methods assessment tool to evaluate study quality, and we will apply a convergent integration approach to synthesize the data. Studies employing qualitative, quantitative, or mixed methods to elucidate the authentic experiences, emotions, and requirements of caregivers of children diagnosed with rheumatic diseases will be included in this review. Ethics and dissemination Ethical approval is not needed, as no primary data will be collected. The results will be made available through a peer-reviewed publication. PROSPERO registration number 42023465302