Where Does Hope Fit In? The Relationship Between Hope, Uncertainty, and Coping Efficacy in Mothers of Children With Duchenne/Becker Muscular Dystrophy

NCT02194725 | Completed

• 2 other identifiers: 99991414914-HG-N149
• Study Type: observational
• Target: 228
• Locations: 1 country
• Sites: 1

Brief 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.

Conditions

Stress

Keywords

Stress and Coping Model; Coping

Outcome Measures

Primary Outcomes (1)

• Coping Efficacy

  Current

Secondary Outcomes (2)

• Uncertainty

  Current

• Adaptation

  Current

Eligibility Criteria

• Age: 18 Years+
• Sex: all
• Healthy Volunteers: Yes
• Age Groups: Adult (18-64), Older Adult (65+)

You may qualify if:

• 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.

You may not qualify if:

• Participants unable to answer a survey in English.

Sponsors & Collaborators

• National Human Genome Research Institute (NHGRI): lead

Study Sites (1)

National Human Genome Research Institute (NHGRI), 9000 Rockville Pike

Bethesda, Maryland, 20892, United States

Location

Related Publications (3)

• 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.

  PMID: 21604081 BACKGROUND

• 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.

  PMID: 11574710 BACKGROUND

• 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.

  PMID: 23993396 BACKGROUND

Study Officials

• Barbara B Biesecker

  National Human Genome Research Institute (NHGRI)

  PRINCIPAL INVESTIGATOR

Study Design

• Study Type: observational
• Observational Model: COHORT
• Time Perspective: CROSS SECTIONAL
• Sponsor Type: NIH
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: July 16, 2014
• First Posted: July 18, 2014
• Study Start: July 6, 2014
• Primary Completion: April 20, 2015
• Study Completion: July 7, 2017
• Last Updated: April 5, 2018

Record last verified: 2017-07-07

Locations

US (1)