Understanding Burnout among Parents of Children with Complex Care Needs: A Scoping Review Followed by a Stakeholder Consultation

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, among parents of children with CCN (i) how burnout is conceptualized, (ii) differe...

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Bibliographic Details
Published in:Journal of child and family studies 2024-05, Vol.33 (5), p.1378-1392
Main Authors: Patty, Nathalie J. S., van Meeteren, Karen M., Willemen, Agnes M., Mol, Marijke A. E., Verdonk, Minke, Ketelaar, Marjolijn, Schuengel, Carlo
Format: Article
Language:English
Subjects:
Behavioral Science and Psychology
Burnout
Caregiving
Child and School Psychology
Child Rearing
Children
Clinical medicine
Coherence
Concept formation
Extremes
Health care
Knowledge base
Medical personnel
Parents
Parents & parenting
Psychology
Research Methodology
Resilience
Review
Social Sciences
Sociology
Stakeholders
Understanding
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Summary: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, among parents of children with CCN (i) how burnout is conceptualized, (ii) differences in burnout scores, (iii) the prevalence of burnout, and (iv) the associated factors related to burnout. A stakeholder consultation including parents of children with CCN, healthcare professionals, and researchers, was conducted to understand their perspectives on important insights and gaps from the literature. A total of 57 studies were eligible for inclusion. Conceptualization of parental burnout varied widely across studies, with few studies investigating the meaning of the concept for parents. Burnout scores were higher among parents of children with CCN and prevalence estimates varied between 20 and 77%, and exceeded burnout among parents of children without CCN. Few studies included associated factors in the context of parenting and caregiving. Stakeholders endorsed the importance of studies into the multifactorial determination of burnout in the context of parenting and caregiving children with CCN. The results highlight the extremes of stress and burden experienced by parents of children with CCN. An important gap remains understanding the complex interplay between personal and contextual factors pertaining to risk and resilience. Highlights Burnout among parents of children with CCN is not a rare phenomenon, therefore awareness and particularly acknowledgement and recognition among these parents in the clinical practice is necessary. The double role of parenting and caregiving limits the relevance of the knowledge base on job-related burnout, requiring a contextualized research approach. The broad variation in domains of burnout and operationalizations used limit the coherence of the body of research. There is a need for an actionable theoretical model of the causes and consequences of burnout among parents of children with CCN.
ISSN:1062-1024
1573-2843
DOI:10.1007/s10826-024-02825-y