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

Abstract Introduction 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 enha...

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Main Authors: Yuxuan Xiang, Ru Ding, Yuan Bixia, Jing Wu, Yongmei Lu, Xiangwei Yang
Format: Article
Language:English
Published: BMC 2025-02-01
Series:Systematic Reviews
Subjects:
Online Access:https://doi.org/10.1186/s13643-025-02788-1
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author Yuxuan Xiang
Ru Ding
Yuan Bixia
Jing Wu
Yongmei Lu
Xiangwei Yang
author_facet Yuxuan Xiang
Ru Ding
Yuan Bixia
Jing Wu
Yongmei Lu
Xiangwei Yang
author_sort Yuxuan Xiang
collection DOAJ
description Abstract Introduction 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. 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. Systematic review registration PROSPERO 42023465302
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spelling doaj-art-ee9c85bd45d14044ae8767c05ada86e12025-08-20T02:59:28ZengBMCSystematic Reviews2046-40532025-02-011411710.1186/s13643-025-02788-1Caregiver experiences and needs in pediatric rheumatic disease: a mixed-methods systematic review protocolYuxuan Xiang0Ru Ding1Yuan Bixia2Jing Wu3Yongmei Lu4Xiangwei Yang5 Nursing Department, The First Affiliated Hospital of Guangzhou University of Chinese MedicineSchool of Nursing, Guangzhou University of Chinese MedicineSchool of Nursing, Guangzhou University of Chinese MedicineSchool of Nursing, Guangzhou University of Chinese MedicineSchool of Nursing, Guangzhou University of Chinese Medicine Nursing Department, The First Affiliated Hospital of Guangzhou University of Chinese MedicineAbstract Introduction 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. 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. Systematic review registration PROSPERO 42023465302https://doi.org/10.1186/s13643-025-02788-1Rheumatic diseasesChildCaregiversExperiencesHealth services needs and demand
spellingShingle Yuxuan Xiang
Ru Ding
Yuan Bixia
Jing Wu
Yongmei Lu
Xiangwei Yang
Caregiver experiences and needs in pediatric rheumatic disease: a mixed-methods systematic review protocol
Systematic Reviews
Rheumatic diseases
Child
Caregivers
Experiences
Health services needs and demand
title Caregiver experiences and needs in pediatric rheumatic disease: a mixed-methods systematic review protocol
title_full Caregiver experiences and needs in pediatric rheumatic disease: a mixed-methods systematic review protocol
title_fullStr Caregiver experiences and needs in pediatric rheumatic disease: a mixed-methods systematic review protocol
title_full_unstemmed Caregiver experiences and needs in pediatric rheumatic disease: a mixed-methods systematic review protocol
title_short Caregiver experiences and needs in pediatric rheumatic disease: a mixed-methods systematic review protocol
title_sort caregiver experiences and needs in pediatric rheumatic disease a mixed methods systematic review protocol
topic Rheumatic diseases
Child
Caregivers
Experiences
Health services needs and demand
url https://doi.org/10.1186/s13643-025-02788-1
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