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Maya BrownZimmerman Thesis.pdf (856.42 KB)

ETD Abstract Container

Abstract Header

The role of community in mental health: a grief and trauma related needs assessment in the vascular Ehlers-Danlos syndrome population

Brown-Zimmerman, Maya
http://orcid.org/0009-0003-9899-9237
http://rave.ohiolink.edu/etdc/view?acc_num=osu1713013416797328

Abstract Details

2024, Master of Science, Ohio State University, Genetic Counseling.
Background: Vascular Ehlers-Danlos syndrome (vEDS) is a life-threatening connective tissue disorder caused by pathogenic variants in the COL3A1 gene. Patients can experience aortic or arterial dissections and hollow organ rupture. While it is rare, affecting between 1/50,000 and 1/200,000 people, support organizations exist. The goal of this study is to determine what information would be helpful for support organizations of the vEDS community to prioritize programming regarding mental health support and how the social aspect of support organizations impacts mental health. Methods: People with vEDS and their first-degree family members, including spouses/partners, were surveyed about their mental health, traumatic experiences -including vicarious trauma -, and support organization participation. An electronic survey was administered, which included the STOP-D, OSSS-3, demographic questions, and questions regarding support organization participation, priorities, exposure to trauma, what materials they would like a support organization to provide regarding grief/trauma, and preferred ways of receiving information. Results: One hundred forty-three people participated. Statistically significant relationships were found between experiencing trauma and vicarious trauma (p=0.002) and having access to a provider who listens and confidence in a provider’s knowledge of vEDS (p=0.001). Ninety five percent of those who reported vicarious trauma also reported experiencing at least one traumatic event. There was no association found between vicarious trauma and subtype of experienced trauma, or between vicarious trauma and support group participation. Although not statistically significant, high stress was reported for both people with vEDS (65%) and their unaffected family members (60%). Participants also wanted a variety of materials or programs from a support organization, including peer support, individual and group therapy, information on advanced directives, and 24/7 crisis assistance. Conclusion: Both personal and vicarious trauma are high in this population and was not related to support group participation in this study. Medical professionals working with vEDS patients and families should be prepared to offer multiple types of support resources to aid in the well-being of patients and families with vEDS.
Gretchen MacCarrick (Advisor)
Kristen Carpenter (Committee Member)
Elizabeth Jordan (Committee Chair)
50 p.
Genetics; Mental Health
trauma, grief, EDS, ehlers-danlos, vascular, genetics, vicarious trauma, support groups, vEDS, mental health, chronic illness, genetic disorder, rare disease

Recommended Citations

Citations

  • Brown-Zimmerman, M. (2024). The role of community in mental health: a grief and trauma related needs assessment in the vascular Ehlers-Danlos syndrome population [Master's thesis, Ohio State University]. OhioLINK Electronic Theses and Dissertations Center. http://rave.ohiolink.edu/etdc/view?acc_num=osu1713013416797328

    APA Style (7th edition)

  • Brown-Zimmerman, Maya. The role of community in mental health: a grief and trauma related needs assessment in the vascular Ehlers-Danlos syndrome population. 2024. Ohio State University, Master's thesis. OhioLINK Electronic Theses and Dissertations Center, http://rave.ohiolink.edu/etdc/view?acc_num=osu1713013416797328.

    MLA Style (8th edition)

  • Brown-Zimmerman, Maya. "The role of community in mental health: a grief and trauma related needs assessment in the vascular Ehlers-Danlos syndrome population." Master's thesis, Ohio State University, 2024. http://rave.ohiolink.edu/etdc/view?acc_num=osu1713013416797328

    Chicago Manual of Style (17th edition)

osu1713013416797328
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© 2024, all rights reserved.
This open access ETD is published by The Ohio State University and OhioLINK.