Understanding burnout among parents of children with complex care needs: A scoping review informed by a stakeholder consultation

Abstract

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.

Psychological aspects of being a parent of an individual with Rett syndrome: A scoping review

“…Some reviews regarding parents of individuals with disabilities and/or complex care needs have also been done. However, in these studies the focus is primarily on one or two specific parts of the psychological aspects, for example, burn out (Patty, 2020), anxiety and depression (Scherer et al, 2019), or coping and quality of life (Fairfax et al, 2019).…”