Background: Interest in patient involvement in research is growing. Research should rather be 'with' or 'by' patients, and not only be 'about' or 'for' patients. Patients' active involvement in research is not self-evident and special efforts have to be made. If we make efforts towards patient involvement, it could contribute to even more relevant projects with an even greater impact. In this paper we describe the process of development of a tool to support patient involvement in research projects. Methods: The tool development was done in a co-creation of experience experts (patients and their parents/ relatives) together with researchers. We used a participatory method in an iterative process comprising three consecutive stages. First, the purpose for the tool was explored, using focus groups. Second, the main ingredients and conceptualization for the tool were determined, using a narrative review. Third, the so-called Involvement Matrix was formalized and finalized using various expert panels. Results: A conversation tool was developed, through which researchers and patients could discuss and explain their roles of involvement in a research project. This tool was formalized and visualized as a 'matrix'. The so-called Involvement Matrix describes five roles (i.e., Listener, Co-thinker, Advisor, Partner, and Decision-maker) and three phases (i.e., Preparation, Execution, and Implementation) and includes a user's guide. Conclusion: The Involvement Matrix can be used prospectively to discuss about possible roles of patients in different phases of projects, and retrospectively to discuss whether roles were carried out satisfactorily. Sharing experiences with the Involvement Matrix and evaluating its impact are the next steps in supporting patient involvement in research.
Objective: The concept of parental burnout has been proposed to be helpful for describing and understanding the impact of parenting children with complex care needs (CCN). The objective of this scoping review was to describe the aims, methods, and results of research on burnout among parents of children with CCN, along with a stakeholder consultation to investigate what stakeholders consider as important insights and gaps based on the findings.Methods: Following the Joanna Briggs Institute for Reviewers’ Manual for scoping reviews, primary studies on burnout among parents of children with CCN were identified through a comprehensive search of peer reviewed and grey literature. Metadata and extracted findings were synthesized, with input from parents of children with CCN (n = 6), healthcare professionals (n = 3), and researchers (n = 3). Results: A total of 57 articles were eligible for inclusion. Prevalence estimates of burnout among parents of children with CCN varied between 20 and 77%, and were reported to exceed burnout among parents of children without CCN. While all studies focused on parents with children with CCN, very few studies specifically focused on burnout within the context of parenting a child with CCN. Stakeholders endorsed the importance of studies into the multifactorial determination of burnout in the context of having children with CCN. Conclusion:The concept of parental burnout highlights the extremes of stress and burden experienced by parents of children with CCN. An important gap regards the complex interplay between personal and contextual factors pertaining to risk and resilience.
Background: The concept of parental burnout has been proposed to be helpful for describing and understanding the impact of parenting children with complex care needs (CCN). The objective of this scoping review was to investigate the aims, methods, and results of research on burnout among parents of children with CCN, and to inform the interpretation as well as implications for research and practice through a stakeholder consultation.Methods: The scoping review was guided by the JBI Reviewers’ Manual for scoping reviews. Primary studies on burnout among parents of children with CCN were identified through a comprehensive search of peer reviewed and grey literature. Metadata and findings were extracted and compiled for further synthesis and interpretation, guided by a stakeholder consultation, involving parents of children with CCN (n = 6), healthcare professionals (n = 3), and researchers (n = 3). The stakeholder consultation was structured according to a Delphi consultation method. Results: A total of 57 articles were eligible for inclusion. Prevalence of burnout among parents of children with CCN varied between 20 and 77%. Parents of children with CCN reported on average higher burnout scores than parents of children without CCN. While all studies focused on parents with children with CCN, very few studies specifically focused on burnout within the context of parenting a child with CCN. Stakeholders endorsed the importance of studies into the multifactorial determination of burnout in the context of having children with CCN. Conclusion:The concept of parental burnout highlights the extremes of stress and burden experienced by parents of children with CCN. By focusing more on contextualized definitions of parental burnout, research may unravel the complex interplay between personal and contextual factors pertaining to risk and resilience.
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