Where Does Hope Fit In? The Relationship Between Hope, Uncertainty, and Coping Efficacy in Mothers of Children With Duchenne/Becker Muscular Dystrophy
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|ClinicalTrials.gov Identifier: NCT02194725|
Recruitment Status : Completed
First Posted : July 18, 2014
Last Update Posted : April 5, 2018
- 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.
- To study the relationships between uncertainty, hope, and coping ability in mothers of children with DBMD.
- 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.
- 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.
|Condition or disease|
|Study Type :||Observational|
|Actual Enrollment :||228 participants|
|Official Title:||Where Does Hope Fit In? The Relationship Between Hope, Uncertainty, and Coping Efficacy in Mothers of Children With Duchenne/Becker Muscular Dystrophy|
|Study Start Date :||July 6, 2014|
|Actual Primary Completion Date :||April 20, 2015|
|Actual Study Completion Date :||July 7, 2017|
- Coping Efficacy [ Time Frame: Current ]
- Uncertainty [ Time Frame: Current ]
- Adaptation [ Time Frame: Current ]
To learn more about this study, you or your doctor may contact the study research staff using the contact information provided by the sponsor.
Please refer to this study by its ClinicalTrials.gov identifier (NCT number): NCT02194725
|United States, Maryland|
|National Human Genome Research Institute (NHGRI), 9000 Rockville Pike|
|Bethesda, Maryland, United States, 20892|
|Principal Investigator:||Barbara B Biesecker||National Human Genome Research Institute (NHGRI)|