دورية أكاديمية
Lack of Diversity in Research on Females with Ehlers-Danlos Syndromes: Recruitment Protocol for a Quantitative Online Survey.
| العنوان: | Lack of Diversity in Research on Females with Ehlers-Danlos Syndromes: Recruitment Protocol for a Quantitative Online Survey. |
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| المؤلفون: | Glayzer JE; Department of Human Development Nursing Science, College of Nursing, University of Illinois Chicago, Chicago, IL, United States., Bray BC; Institute for Health Research and Policy, University of Illinois Chicago, Chicago, IL, United States., Kobak WH; Department of Obstetrics and Gynecology, College of Medicine, University of Illinois Chicago, Chicago, IL, United States., Steffen AD; Department of Human Development Nursing Science, College of Nursing, University of Illinois Chicago, Chicago, IL, United States., Schlaeger JM; Department of Human Development Nursing Science, College of Nursing, University of Illinois Chicago, Chicago, IL, United States. |
| المصدر: | JMIR research protocols [JMIR Res Protoc] 2024 May 02; Vol. 13, pp. e53646. Date of Electronic Publication: 2024 May 02. |
| نوع المنشور: | Journal Article; Research Support, Non-U.S. Gov't |
| اللغة: | English |
| بيانات الدورية: | Publisher: JMIR Publications Country of Publication: Canada NLM ID: 101599504 Publication Model: Electronic Cited Medium: Internet ISSN: 1929-0748 (Electronic) Linking ISSN: 19290748 NLM ISO Abbreviation: JMIR Res Protoc Subsets: MEDLINE |
| أسماء مطبوعة: | Original Publication: Toronto : JMIR Publications |
| مواضيع طبية MeSH: | Ehlers-Danlos Syndrome*/diagnosis , Social Media*/statistics & numerical data, Humans ; Female ; Cross-Sectional Studies ; Adult ; Surveys and Questionnaires ; Patient Selection ; United States/epidemiology ; Middle Aged |
| مستخلص: | Background: Ehlers-Danlos syndromes (EDS) are a group of connective tissue disorders caused by fragile lax collagen. Current EDS research lacks racial and ethnic diversity. The lack of diversity may be associated with the complexities of conducting a large international study on an underdiagnosed condition and a lack of EDS health care providers who diagnose and conduct research outside of the United States and Europe. Social media may be the key to recruiting a large diverse EDS sample. However, studies that have used social media to recruit have not been able to recruit diverse samples. Objective: This study aims to discuss challenges, strategies, outcomes, and lessons learned from using social media to recruit a large sample of females with EDS. Methods: Recruitment on social media for a cross-sectional survey examining dyspareunia (painful sexual intercourse) in females was examined. Inclusion criteria were (1) older than 18 years of age, (2) assigned female at birth, and (3) diagnosed with EDS. Recruitment took place on Facebook and Twitter (now X), from June 1 to June 25, 2019. Results: A total of 1178 females with EDS were recruited from Facebook (n=1174) and X (n=4). On Facebook, participants were recruited via support groups. A total of 166 EDS support groups were identified, 104 permitted the principal investigator to join, 90 approved posting, and the survey was posted in 54 groups. Among them, 30 of the support groups posted in were globally focused and not tied to any specific country or region, 21 were for people in the United States, and 3 were for people outside of the United States. Recruitment materials were posted on X with the hashtag #EDS. A total of 1599 people accessed the survey and 1178 people were eligible and consented. The average age of participants was 38.6 (SD 11.7) years. Participants were predominantly White (n=1063, 93%) and non-Hispanic (n=1046, 92%). Participants were recruited from 29 countries, with 900 (79%) from the United States and 124 (11%) from Great Britain. Conclusions: Our recruitment method was successful at recruiting a large sample. The sample was predominantly White and from North America and Europe. More research needs to be conducted on how to recruit a diverse sample. Areas to investigate may include connecting with more support groups from outside the United States and Europe, researching which platforms are popular in different countries, and translating study materials into different languages. A larger obstacle to recruiting diverse samples may be the lack of health care providers that diagnose EDS outside the United States and Europe, making the pool of potential participants small. There needs to be more health care providers that diagnose and treat EDS in countries that are predominantly made up of people of color as well as research that specifically focuses on these populations. International Registered Report Identifier (irrid): RR1-10.2196/53646. (©Jennifer E Glayzer, Bethany C Bray, William H Kobak, Alana D Steffen, Judith M Schlaeger. Originally published in JMIR Research Protocols (https://www.researchprotocols.org), 02.05.2024.) |
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| معلومات مُعتمدة: | F31 NR019529 United States NR NINR NIH HHS; R01 HD091210 United States HD NICHD NIH HHS; UL1 TR001866 United States TR NCATS NIH HHS |
| فهرسة مساهمة: | Keywords: Ehlers-Danlos syndrome; Facebook; United States; challenges; connective tissue disorders; cross-sectional survey; diversity; dyspareunia; ethnic; hereditary disease; hypermobility; information seeking; online; painful sex; racial; recruitment; social media; strategies; strategy |
| تواريخ الأحداث: | Date Created: 20240502 Date Completed: 20240502 Latest Revision: 20240519 |
| رمز التحديث: | 20240519 |
| مُعرف محوري في PubMed: | PMC11099804 |
| DOI: | 10.2196/53646 |
| PMID: | 38696252 |
| قاعدة البيانات: | MEDLINE |
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