Bohnert, Kelsey
(2019)
Thematic analysis of sexual and gender minority enrollment in the all of us Pennsylvania project: implications for public health research.
Master's Thesis, University of Pittsburgh.
(Unpublished)
Abstract
To date, large-scale population studies have failed to fully assess the health of sexual and gender minority (SGM) populations. With the implementation of individualized healthcare, comprehensive patient information—including gender identity and sexual orientation (GI/SO)—are gaining recognition as critically important to designing holistic treatment plans and engaging patients. Historically, SGMs have been described in the context of existing health disparities, most commonly substance abuse and HIV/AIDS. The All of Us National Precision Medicine research project is a historic effort to gather health information from one million Americans and has emphasized engaging with populations historically underserved and underrepresented in biomedical research, including SGM populations. To increase SGM representation, better understanding of the barriers and facilitators to enrollment in public health research is necessary. This study explored the attitudes, knowledge, and beliefs of 23 self-identified SGMs regarding public health research across six focus groups in Pittsburgh, PA. Participants who had previously enrolled in All of Us were also asked specifically about their enrollment experience. Discussions were audio-recorded and evaluated using thematic analysis. Five themes were identified: (1) explicit invitations and clear messaging, (2) factors that tip the scales, (3) variation of SGM research accessibility, (4) barriers and facilitators to disclosing identity, and (5) personalization of the research experience. Participants acknowledged numerous social ecological factors that may influence their decision to enroll in a study, including SGM-specific advertising, well-trained staff who create a comfortable atmosphere, inclusive demographic questionnaires that allow for complete identity disclosure, and the ability to opt out of uncomfortable study components when possible. Based on participant recommendations, All of Us could consider adding same sex couples and gender non-binary individuals to advertising campaigns, clarifying the use of psychiatric records in medical records sharing, and engaging SGM community leaders in recruitment efforts. Beyond program-specific suggestions, the public health significance of this work is the reinforcement of the need for SGM-specific considerations in the design and implementation of research. Researchers can better engage SGMs through explicit invitations to participate, inclusive demographic questionnaires, and a trained staff who can engage with participants with a range of gender identities and sexual orientations.
Share
| Citation/Export: |
|
| Social Networking: |
|
Details
| Item Type: |
University of Pittsburgh ETD
|
| Status: |
Unpublished |
| Creators/Authors: |
|
| ETD Committee: |
|
| Date: |
24 July 2019 |
| Date Type: |
Publication |
| Defense Date: |
21 June 2019 |
| Approval Date: |
24 July 2019 |
| Submission Date: |
28 June 2019 |
| Access Restriction: |
1 year -- Restrict access to University of Pittsburgh for a period of 1 year. |
| Number of Pages: |
151 |
| Institution: |
University of Pittsburgh |
| Schools and Programs: |
School of Public Health > Genetic Counseling |
| Degree: |
MS - Master of Science |
| Thesis Type: |
Master's Thesis |
| Refereed: |
Yes |
| Uncontrolled Keywords: |
Public health, SGM, LGBT, sexual and gender minority, research participation, qualitative research, focus groups |
| Date Deposited: |
24 Jul 2019 13:47 |
| Last Modified: |
01 Jul 2020 05:15 |
| URI: |
http://d-scholarship.pitt.edu/id/eprint/37015 |
Metrics
Monthly Views for the past 3 years
Plum Analytics
Actions (login required)
 |
View Item |
![[feed]](/images/feed-icon-32x32.png){kind=icon}