Uncertainty, Hope, and Coping Efficacy Among Mothers of Children with Duchenne/Becker Muscular Dystrophy

Bell M, Biesecker BB, Bodurtha J, Peay HL. Uncertainty, hope, and coping efficacy among mothers of children with Duchenne/Becker muscular dystrophy. Clinical genetics 2019;95:677-683.

Bell_2019_Clin Genet. Jun;95(6);677-683

Abstract

Uncertainty is a challenging aspect of caring for children with Duchenne/Becker Muscular Dystrophies (DBMD). Although uncertainty is often perceived as a state to be avoided, hope may influence caregivers’ perceptions of uncertainty as opportunity. The goal of this cross-sectional quantitative study was to pilot a novel measure of state-based hope, and test relationships among uncertainty, hope, spirituality, and coping efficacy in mothers of children with DBMD. Mothers (n=202) were recruited through DuchenneConnect, Parent Project Muscular Dystrophy, and Cincinnati’s Children Hospital. A one-component solution for the novel Parent Hope Scale explained 44.3% of the variance, and the measure demonstrated high internal consistency. Higher hope (p<0.001), further disease progression (p=0.042), and older mother’s age (p=0.001) were significantly associated with lower perceptions of uncertainty. Mothers reporting less hope (p<0.001), higher perceptions of uncertainty (p<0.001), and less spirituality (p=0.001) reported lower coping efficacy. As such, hope appears to be a key variable in shaping uncertainty appraisals and facilitating coping efficacy. While further research is needed, counseling aimed at bolstering hope, particularly among less-hopeful mothers, and interventions to reappraise uncertainty, may be helpful in promoting coping efficacy.

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