source: Johns Hopkins University
Duchenne and Becker Muscular Dystrophy (DBMD) is a complex, progressive, and ultimately terminal condition laden with caregiver uncertainty often related to prognosis, medical management, social, and existential concerns. This uncertainty can make adaptation more difficult for mothers, yet some view uncertainty as allowing for the opportunity of positive outcomes. Literature suggests that the concept of hope may influence this appraisal of uncertainty. It is not yet fully understood how mothers of children with DBMD appraise, cope with, and ultimately adapt to their child’s DBMD in light of this uncertainty or the role hope plays in the process.
To examine the relationships between maternal uncertainty, hope, and coping efficacy among mothers of children with DBMD.
Mothers of children with DBMD were recruited through the Duchenne Connect Registry, Parent Project Muscular Dystrophy, and Cincinnati’s Children Hospital. A cross-sectional design with quantitative methodology was used to examine the relationships among maternal uncertainty, coping efficacy, hope, and other mother and child characteristics. Several open-ended questions were included to assess how mothers appraise uncertainty.
The predominant focus of mothers’ uncertainty was medical management and social support. Multivariate analysis revealed that older mothers’ age, higher hope scores, and having less ambulatory children were significantly associated with less uncertainty. Mothers with lower hope scores, higher perceptions of uncertainty, and those reporting being less spiritual were less confident in their ability to cope with their child’s DMBD.
Because younger mothers and those with ambulatory children with DBMD perceive more uncertainty, especially uncertainty related to medical management and social support, efforts to help mothers manage uncertainty may be more effective if tailored towards mothers of children with new diagnosis and specific domains of uncertainties most salient to them. Additionally, hope seems to be a factor in shaping uncertainty appraisals and facilitating coping efficacy. Although future studies are needed, interventions aimed at bolstering maternal hope or guiding mothers with low hope to other uncertainty management and reappraisal strategies may be helpful.