- ICH GCP
- US Clinical Trials Registry
- Clinical Trial NCT02194725
Where Does Hope Fit In? The Relationship Between Hope, Uncertainty, and Coping Efficacy in Mothers of Children With Duchenne/Becker Muscular Dystrophy
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.
Study Overview
Status
Conditions
Detailed Description
Study Type
Enrollment (Actual)
Contacts and Locations
Study Locations
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Maryland
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Bethesda, Maryland, United States, 20892
- National Human Genome Research Institute (NHGRI), 9000 Rockville Pike
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Participation Criteria
Eligibility Criteria
Ages Eligible for Study
Accepts Healthy Volunteers
Genders Eligible for Study
Description
- INCLUSION CRITERIA:
Participants will be biological mothers of a living child with Duchenne or Becker muscular dystrophy living in the United States, who are 18 years or older and able to answer a survey in English.
Participants will be asked to disclose their child's diagnosis but no screening evaluation will be required.
EXCLUSION CRITERIA:
Participants unable to answer a survey in English.
Study Plan
How is the study designed?
Design Details
What is the study measuring?
Primary Outcome Measures
Outcome Measure |
Time Frame |
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Coping Efficacy
Time Frame: Current
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Current
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Secondary Outcome Measures
Outcome Measure |
Time Frame |
---|---|
Uncertainty
Time Frame: Current
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Current
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Adaptation
Time Frame: Current
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Current
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Collaborators and Investigators
Publications and helpful links
General Publications
- Bedard M, Molloy DW, Squire L, Dubois S, Lever JA, O'Donnell M. The Zarit Burden Interview: a new short version and screening version. Gerontologist. 2001 Oct;41(5):652-7. doi: 10.1093/geront/41.5.652.
- Ballew SH, Hannum SM, Gaines JM, Marx KA, Parrish JM. The role of spiritual experiences and activities in the relationship between chronic illness and psychological well-being. J Relig Health. 2012 Dec;51(4):1386-96. doi: 10.1007/s10943-011-9498-0.
- Biesecker BB, Erby LH, Woolford S, Adcock JY, Cohen JS, Lamb A, Lewis KV, Truitt M, Turriff A, Reeve BB. Development and validation of the Psychological Adaptation Scale (PAS): use in six studies of adaptation to a health condition or risk. Patient Educ Couns. 2013 Nov;93(2):248-54. doi: 10.1016/j.pec.2013.05.006. Epub 2013 Aug 28.
Study record dates
Study Major Dates
Study Start
Primary Completion (Actual)
Study Completion (Actual)
Study Registration Dates
First Submitted
First Submitted That Met QC Criteria
First Posted (Estimate)
Study Record Updates
Last Update Posted (Actual)
Last Update Submitted That Met QC Criteria
Last Verified
More Information
Terms related to this study
Keywords
Additional Relevant MeSH Terms
Other Study ID Numbers
- 999914149
- 14-HG-N149
This information was retrieved directly from the website clinicaltrials.gov without any changes. If you have any requests to change, remove or update your study details, please contact register@clinicaltrials.gov. As soon as a change is implemented on clinicaltrials.gov, this will be updated automatically on our website as well.
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