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Personal experiences of leaders of family-led organizations and their role as advocates: a thematic analysis

Brunker, Sarah (2019) Personal experiences of leaders of family-led organizations and their role as advocates: a thematic analysis. Master's Thesis, University of Pittsburgh. (Unpublished)

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There are several different types of family-led organizations that provide support for family members of children and youth with special health care needs, CYSHCN. Family-to-Family (F2F) groups and State Affiliate Organizations (SAOs) are state level organizations that are part of the larger, national Family Voices organization, and focus on providing support related to healthcare systems. Parent-to-Parent groups are also state level organizations that are part of the larger, national Parent-to-Parent organization, and focus on providing one-on-one emotional support. Family-led organizations work at both individual and systems levels to support family members of CYSHCN and to ensure the family voice is included in the care of CYSHCN. All staff of family-led organizations are by definition family members of CYSHCN or CYSHCN self-advocates.
The National Coordinating Center (NCC) and its Regional Genetics Networks (RGNs) work with family-led organizations to help individuals, particularly those in underserved populations, access genetic services. The New York Mid-Atlantic Consortium (NYMAC) is the RGN for the region including Delaware, Maryland, Pennsylvania, New Jersey, New York, Virginia, West Virginia, and the District of Columbia. The family-led organizations within this region were identified by the National Genetics Education and Family Support Center, an initiative run by Genetic Alliance, which works to support individuals with diverse healthcare needs.
For this study, six leaders of family-led organizations within the NYMAC region were interviewed using a semi-structured interview guide. The interviews were recorded, transcribed, and analyzed using thematic analysis. The three themes and the associated subthemes that were identified include the experience of being a family member of a CYSHCN and the associated difficult emotions; working with providers and expectations and hopes for the CYSHCN, care coordination, and experiences with genetics; and lastly, the experience of being a leader in a family-led organization and issues of access, the progression of the family-led organizations, and ideological differences among family-led organizations. The information and expertise of both the family-led organizations and the leaders of these organizations have the potential to improve the care of family members of CYSHCN and CYSHCN themselves across a variety of systems, which could have a significant impact on public health.


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Item Type: University of Pittsburgh ETD
Status: Unpublished
CreatorsEmailPitt UsernameORCID
Brunker, Sarahseb166@pitt.eduseb166
ETD Committee:
TitleMemberEmail AddressPitt UsernameORCID
Thesis AdvisorDurst,
Committee MemberGrubs,
Committee MemberTerry, Martha
Committee MemberBeth,
Date: 26 September 2019
Date Type: Publication
Defense Date: 30 July 2019
Approval Date: 26 September 2019
Submission Date: 23 July 2019
Access Restriction: No restriction; Release the ETD for access worldwide immediately.
Number of Pages: 169
Institution: University of Pittsburgh
Schools and Programs: School of Public Health > Human Genetics
Degree: MS - Master of Science
Thesis Type: Master's Thesis
Refereed: Yes
Uncontrolled Keywords: Advocate Genetic Family-Led Organization Thematic Analysis
Date Deposited: 26 Sep 2019 16:54
Last Modified: 26 Sep 2019 20:40


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