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

Abstract

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.

Investigation of the Relationship between Burnout Level and Psychological Resilience in Parents of Children with Down Syndrome

“…The emotional exhaustion subscale (EES) consists of 13 items, [1][2][3]5,6,8,10,11,[13][14][15][16][17] while the personal achievement subscale (PAS) consists of eight items. 4,7,9,12,[18][19][20][21] In the Duygun and Sezgin's study, Cronbach's α was found to be 0.83 for the EES and 0.72 for the PAS. 11 A total score cannot be obtained for the MBI; therefore, the score for each subscale is calculated separately.…”

“…11 Parental burnout has been defined as "long-term exposure to parent-related risks that can have serious psychosocial effects." 12 Each parent has a different strategy to cope with burnout, one of which is psychological 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).…”