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Research participation in the Duchenne muscular dystrophy community: parent perceived barriers and their impact on families

Clinard, Kristin (2015) Research participation in the Duchenne muscular dystrophy community: parent perceived barriers and their impact on families. Master's Thesis, University of Pittsburgh. (Unpublished)

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Abstract

Duchenne Muscular Dystrophy (DMD) is a rare, X-linked degenerative neuromuscular disorder causing severe progressive muscle loss and premature death. While research in DMD is critical to advance treatment and care it also presents many challenges and sacrifices for families who are asked to participate. These barriers and impacts families incur can affect recruitment of research participants. Poor recruitment constrains the ability to achieve and measure progress in clinical research, and consequently affects how well new therapies perform in the clinical setting. The purpose of the present study was to identify family barriers to research recruitment and participation in DMD research and to explore how these barriers impact families.
In collaboration with the Cooperative International Neuromuscular Research Groups (CINRG) research network and associated Muscular Dystrophy Association (MDA) clinics, this qualitative study included parent-centered focus groups that were conducted at five sites: Pittsburgh, PA; Washington, DC; Minneapolis, MN; Houston, TX; and Sacramento, CA. A total of eight guided focus groups attended by 28 parents of boys or young men with DMD were audio-recorded and transcribed. Qualitative thematic analysis of focus group transcripts was conducted to identify themes. Major themes identified as perceived barriers to research participation included: 1) commitments; 2) fighting a new battle; and 3) the gamble. Parents described the familial impacts of these barriers, which included financial burdens, family sacrifices, and psychological stress.
Participating in research was shown to affect many aspects of participants’ lives and additionally had an impact on the entire family. These findings highlight the need for greater support and appropriate resources to alleviate potential barriers faced by families. Genetic counselors are well suited to communicate research opportunities, address the specific needs of families, and assist with development of strategies to engage the DMD community in research. Identifying barriers of research participation and understanding how these barriers may impact families have significant public health implications which can provide information to improve research protocols, facilitate development of family resources, and influence public health policies to provide additional support to families and encourage greater research involvement.


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Details

Item Type: University of Pittsburgh ETD
Status: Unpublished
Creators/Authors:
CreatorsEmailPitt UsernameORCID
Clinard, Kristinkrc83@pitt.eduKRC83
ETD Committee:
TitleMemberEmail AddressPitt UsernameORCID
Thesis AdvisorBendixen, Roxanna M.bendixen@pitt.eduBENDIXEN
Committee ChairHache, Laurenlhache@childrensnational.org
Committee MemberGrubs, Robin E.rgrubs@pitt.eduRGRUBS
Committee MemberFinegold, David N.dnf@pitt.eduDNF
Date: 29 June 2015
Date Type: Publication
Defense Date: 8 April 2015
Approval Date: 29 June 2015
Submission Date: 3 April 2015
Access Restriction: 3 year -- Restrict access to University of Pittsburgh for a period of 3 years.
Number of Pages: 120
Institution: University of Pittsburgh
Schools and Programs: Graduate School of Public Health > Human Genetics
Degree: MS - Master of Science
Thesis Type: Master's Thesis
Refereed: Yes
Uncontrolled Keywords: Duchenne muscular dystrophy; research barriers; family impact;parent
Date Deposited: 29 Jun 2015 13:54
Last Modified: 01 May 2018 05:15
URI: http://d-scholarship.pitt.edu/id/eprint/24355

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