Does Informal Caregiving Lead to Parental Burnout? Comparing Parents Having (or Not) Children With Mental and Physical Issues

Abstract

Introduction: Parenting a child with special needs (CSN) may be an important challenge. Previous research has highlighted an increased risk of parental burnout among parents caring for their CSN. Yet, these studies only focused on children with specific issues and did not consider the wide variety of CSN. There is thus a need to take a more global approach to assessing the impact of caring for a CSN on parental burnout. In addition, the impact on parental burnout of personality and parenting (dis)agreement needs to be measured to have a better understanding of parent-caregivers’ (PCgs) burnout.Method: An online survey was completed by a large sample of parents from which a subsample of PCgs was identified.Results: T-tests highlighted significantly more parental burnout among parents of CSN. However, further analyses showed that parents with only one child with one special need did not experience significantly more burnout than parents with typical children. The significant difference lay in the presence of comorbidity or the presence of multiple CSN in the family. Hierarchical regressions showed an important impact of Neuroticism for every burnout facet, along with co-parenting (dis)agreement. Subjective consequences of having to care for a CSN were also related to the burnout facets of both emotional exhaustion and emotional distancing.Discussion: The presence of comorbidity and of multiple CSN in the family were related to more PCg burnout, emphasizing the need to consider these situations in further research. The role of neuroticism in PCg burnout confirms previous research both in parental and professional contexts. Parenting (dis)agreement also highlights the importance of dyadic support among parents. Finally, the importance of subjective aspects suggests that parental perception of their situation remains a central element in understanding the consequences of caregiving.

A Step Forward in the Conceptualization and Measurement of Parental Burnout: The Parental Burnout Assessment (PBA)

“…Participants were asked about their age, gender, type of family (single parenthood by choice or by circumstance, living with the children's father/mother, or blended family), level of education, work regimen, number of children, and for each child: gender, age, and whether the child suffered from a disease, disability, or behavioral/emotional/learning disorder (yes-no). If the parent answered “yes” for at least one child, he or she was asked to fill in a short questionnaire about the impact of having a child with special needs on his or her own life (see Gérain and Zech, 2018 ).…”

“Having All of Your Internal Resources Exhausted Beyond Measure and Being Left with No Clean-Up Crew”: Defining Autistic Burnout

“…1,2 Despite how often and urgently the autistic community discusses autistic burnout, the concept is almost completely absent from the academic and clinical literature. A literature search for autism and burnout produces publications on family, teacher, caregiver, peer, and other burnout related to caring for or being around autistic people, [3][4][5][6] but no studies on burnout in autistic people themselves. Two recent clinical articles reference autistic burnout as an issue to be considered, 7,8 and only a few other recent articles casually mention burnout as a potential consequence of poor social support or masking (camouflaging one's self to conform to social pressures) or include it as research priority.…”

Informal Caregiver Burnout? Development of a Theoretical Framework to Understand the Impact of Caregiving

“…Double-duty caregivers – being a formal and informal caregiver at the same time – are at higher risk of professional burnout than work-only caregivers (Häusler et al, 2017; DePasquale et al, 2018). In the same way, being an informal caregiver has been shown to increase the chances of parental burnout (Lindström et al, 2011; Gérain and Zech, 2018; Séjourné et al, 2018). The informal caregiving role thus seems to affect the caregiver’s other roles.…”

“…Emotional competencies have been found to play a role in preventing professional and parental burnout (Görgens-Ekermans and Brand, 2012; Mikolajczak et al, 2018) and identified as a promising target of intervention to reduce informal caregivers’ psychological distress (Weaving et al, 2014). More broadly, personality traits also seem to have an impact on subjective burden and informal caregiver burnout (Chiao et al, 2015; Gérain and Zech, 2018).…”

“…The common ground is the intensity of the symptoms in each health issue, which appears to be more related to caregiving subjective burden (Chiao et al, 2015). Such evidence has also been highlighted for informal caregiver burnout in caregivers of individuals with mental illness (Kokurcan et al, 2015) or dementia (Cheung and Chow, 2011; Truzzi et al, 2012; Yan, 2014), and in caregivers of children with disability (Demirhan et al, 2011; Basaran et al, 2013), chronic disease (Riva et al, 2014), or comorbid issues (Gérain and Zech, 2018). Beyond the health issue itself, correlative analyses have also shown a relationship between recipient’s well-being and depressive symptoms on the one hand and subjective burden and informal caregiver burnout on the other, which suggests a mutual influence of the emotional states in the dyad (Ybema et al, 2002; Yılmaz et al, 2009; Adelman et al, 2014; Kindt et al, 2015).…”