At a glance
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Where Does Hope Fit In? The Relationship Between Hope, Uncertainty, and Coping Efficacy in Mothers of Children With Duchenne/Becker Muscular Dystrophy
In Brief
An observational study for Stress. Completed, enrolled 228 participants across 1 site.
Detailed Summary
Background: \- Children with Duchenne/Becker Muscular Dystrophy (DBMD) slowly lose muscle function. They usually die at a young age. Some mothers adapt to the demands of caring for a child with this disease better than others. Studies show that a person s hope may positively affect how they cope and adapt. Researchers want to find out more about this. They want to develop ways to improve caregivers overall wellness. Objective: \- To study the relationships between uncertainty, hope, and coping ability in mothers of children with DBMD. Eligibility: \- Women in the United States 18 years and older. They must be biological mothers of a living child with DBMD and be able to answer a survey in English. Design: * This study is part of a larger study that examines the well-being of mothers with sons who have DBMD. * Participants will take a questionnaire. The questionnaire can be done on paper or on a computer. It will take 30 45 minutes to complete. * The questionnaire will include basic demographic questions about the participant and the child. There will also be questions about how the participant copes with the stress and uncertainty of DBMD. * For most of the questions, participants will rate their feelings on a scale. There will also be four open-ended questions.