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) 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.