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أعرض في EDS

Exploring Online Crowdfunding for Cancer-Related Costs Among LGBTQ+ (Lesbian, Gay, Bisexual, Transgender, Queer, Plus) Cancer Survivors: Integration of Community-Engaged and Technology-Based Methodologies.

التفاصيل البيبلوغرافية
العنوان: Exploring Online Crowdfunding for Cancer-Related Costs Among LGBTQ+ (Lesbian, Gay, Bisexual, Transgender, Queer, Plus) Cancer Survivors: Integration of Community-Engaged and Technology-Based Methodologies.
المؤلفون: Waters AR; Department of Health Policy and Management, Gillings School of Global Public Health, University of North Carolina, Chapel Hill, NC, United States.; Cancer Control and Population Sciences, Huntsman Cancer Institute at the University of Utah, Salt Lake City, UT, United States., Turner C; Cancer Control and Population Sciences, Huntsman Cancer Institute at the University of Utah, Salt Lake City, UT, United States.; College of Nursing, University of Utah, Salt Lake City, UT, United States., Easterly CW; Department of Health Policy and Management, Gillings School of Global Public Health, University of North Carolina, Chapel Hill, NC, United States., Tovar I; Cancer Control and Population Sciences, Huntsman Cancer Institute at the University of Utah, Salt Lake City, UT, United States.; College of Nursing, University of Utah, Salt Lake City, UT, United States., Mulvaney M; Crowdfunding Cancer Costs LGBT Study Advisory Board, Huntsman Cancer Institute at the University of Utah, Salt Lake City, UT, United States.; School of Public Health, Indiana University Bloomington, Bloomington, IN, United States., Poquadeck M; Crowdfunding Cancer Costs LGBT Study Advisory Board, Huntsman Cancer Institute at the University of Utah, Salt Lake City, UT, United States.; Wilmot Cancer Institute, University of Rochester Medical Center, Rochester, NY, United States., Johnston H; Crowdfunding Cancer Costs LGBT Study Advisory Board, Huntsman Cancer Institute at the University of Utah, Salt Lake City, UT, United States., Ghazal LV; Crowdfunding Cancer Costs LGBT Study Advisory Board, Huntsman Cancer Institute at the University of Utah, Salt Lake City, UT, United States.; School of Nursing, University of Rochester, Rochester, NY, United States., Rains SA; Department of Communication, University of Arizona, Tucson, AZ, United States., Cloyes KG; School of Nursing, Oregon Health & Science University, Portland, OR, United States., Kirchhoff AC; Cancer Control and Population Sciences, Huntsman Cancer Institute at the University of Utah, Salt Lake City, UT, United States.; Department of Pediatrics, University of Utah School of Medicine, Salt Lake City, UT, United States., Warner EL; Cancer Control and Population Sciences, Huntsman Cancer Institute at the University of Utah, Salt Lake City, UT, United States.; College of Nursing, University of Utah, Salt Lake City, UT, United States.
المصدر: JMIR cancer [JMIR Cancer] 2023 Oct 30; Vol. 9, pp. e51605. Date of Electronic Publication: 2023 Oct 30.
نوع المنشور: Journal Article
اللغة: English
بيانات الدورية: Publisher: JMIR Publications Country of Publication: Canada NLM ID: 101666844 Publication Model: Electronic Cited Medium: Print ISSN: 2369-1999 (Print) Linking ISSN: 23691999 NLM ISO Abbreviation: JMIR Cancer Subsets: PubMed not MEDLINE
أسماء مطبوعة: Original Publication: Toronto, ON : JMIR Publications, [2015]-
مستخلص: Background: Cancer survivors frequently experience cancer-related financial burdens. The extent to which Lesbian, Gay, Bisexual, Transgender, Queer, Plus (LGBTQ+) populations experience cancer-related cost-coping behaviors such as crowdfunding is largely unknown, owing to a lack of sexual orientation and gender identity data collection and social stigma. Web-scraping has previously been used to evaluate inequities in online crowdfunding, but these methods alone do not adequately engage populations facing inequities.
Objective: We describe the methodological process of integrating technology-based and community-engaged methods to explore the financial burden of cancer among LGBTQ+ individuals via online crowdfunding.
Methods: To center the LGBTQ+ community, we followed community engagement guidelines by forming a study advisory board (SAB) of LGBTQ+ cancer survivors, caregivers, and professionals who were involved in every step of the research. SAB member engagement was tracked through quarterly SAB meeting attendance and an engagement survey. We then used web-scraping methods to extract a data set of online crowdfunding campaigns. The study team followed an integrated technology-based and community-engaged process to develop and refine term dictionaries for analyses. Term dictionaries were developed and refined in order to identify crowdfunding campaigns that were cancer- and LGBTQ+-related.
Results: Advisory board engagement was high according to metrics of meeting attendance, meeting participation, and anonymous board feedback. In collaboration with the SAB, the term dictionaries were iteratively edited and refined. The LGBTQ+ term dictionary was developed by the study team, while the cancer term dictionary was refined from an existing dictionary. The advisory board and analytic team members manually coded against the term dictionary and performed quality checks until high confidence in correct classification was achieved using pairwise agreement. Through each phase of manual coding and quality checks, the advisory board identified more misclassified campaigns than the analytic team alone. When refining the LGBTQ+ term dictionary, the analytic team identified 11.8% misclassification while the SAB identified 20.7% misclassification. Once each term dictionary was finalized, the LGBTQ+ term dictionary resulted in a 95% pairwise agreement, while the cancer term dictionary resulted in an 89.2% pairwise agreement.
Conclusions: The classification tools developed by integrating community-engaged and technology-based methods were more accurate because of the equity-based approach of centering LGBTQ+ voices and their lived experiences. This exemplar suggests integrating community-engaged and technology-based methods to study inequities is highly feasible and has applications beyond LGBTQ+ financial burden research.
(©Austin R Waters, Cindy Turner, Caleb W Easterly, Ida Tovar, Megan Mulvaney, Matt Poquadeck, Hailey Johnston, Lauren V Ghazal, Stephen A Rains, Kristin G Cloyes, Anne C Kirchhoff, Echo L Warner. Originally published in JMIR Cancer (https://cancer.jmir.org), 30.10.2023.)
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معلومات مُعتمدة: P30 CA042014 United States CA NCI NIH HHS; T32 CA116339 United States CA NCI NIH HHS
فهرسة مساهمة: Keywords: LGBT; SGM; campaign; campaigns; cancer; classification; community-engaged; cost; costs; crowdfund; crowdfunding; dictionary; engagement; equity; finance; financial; financial burden; fund; funding; fundraise; fundraising; inequities; inequity; oncology; participatory; sexual minorities; sexual monitory; term; terminologies; terminology; terms; underrepresented; web scraping
تواريخ الأحداث: Date Created: 20231030 Latest Revision: 20240210
رمز التحديث: 20240210
مُعرف محوري في PubMed: PMC10644187
DOI: 10.2196/51605
PMID: 37902829
قاعدة البيانات: MEDLINE
الوصف
تدمد:2369-1999
DOI:10.2196/51605