Uncertainty, hope, and coping efficacy among mothers of children with Duchenne/Becker muscular dystrophy

Megan Bell, Barbara B. Biesecker, Joann N Bodurtha, Holly L. Peay

Research output: Contribution to journalArticle

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 showed 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.

Original languageEnglish (US)
JournalClinical Genetics
DOIs
Publication statusPublished - Jan 1 2019

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Keywords

  • coping efficacy
  • Duchenne muscular dystrophy
  • hope
  • uncertainty

ASJC Scopus subject areas

  • Genetics
  • Genetics(clinical)

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