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) conceptualization of burnout, (ii) differences in burnout scores and/or dimensions, (iii) prevalence of burnout, and (iv) associated factors. 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, with few studies investigating the meaning of the concept for parents. Burnout scores were elevated among parents of children with CCN with prevalence estimates varying between 20 and 77%, exceeding 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 the complex interplay between personal and contextual factors pertaining to risk and resilience.