Objectives: This systematic review aimed to 1) describe the quality of life (QOL) of parents of children with childhood-onset epilepsy (CWE), 2) identify factors associated with parental QOL, and 3) evaluate the association between parents' QOL and children's psychological well-being.
Methods: We conducted a comprehensive search of MEDLINE, EMBASE, and PsycINFO and conducted forward and backward citation tracking. A total of 15 articles met inclusion criteria. Parents' QOL was compared with population norms, healthy controls, and parents of children with other chronic conditions. Factors associated with parental QOL were systematically evaluated.
Results: Heterogeneity in study design and reporting prevented a meta-analytic synthesis of results. The majority of studies found that parents of CWE had poorer QOL relative to healthy controls or population norms and similar QOL as parents of children with other chronic conditions. In addition, poorer parental QOL was consistently associated with greater parental anxiety and depressive symptoms and poorer socioeconomic status and child QOL. Mothers had poorer QOL relative to fathers. Seizure control was not consistently associated with parental QOL. Results highlight the impact of family environment and psychosocial factors.
Significance: This review suggests that parents of CWE have compromised QOL. The results are in line with previous research showing the interdependent nature of psychosocial and medical factors, with psychosocial factors playing a critical role in child and parental QOL and well-being. Interventions targeting the family unit are warranted, and healthcare providers should be aware of the bidirectional relationship of epilepsy, family environment, and child/parent health and well-being.
Keywords: Caregiver; Childhood onset; Family; Mental health; Pediatric; QOL.
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