scholarly journals Clinical Trial Recruitment and Retention of College Students with Type 1 Diabetes via Social Media: An Implementation Case Study

2019 ◽  
Vol 13 (3) ◽  
pp. 445-456 ◽  
Author(s):  
Lauren E. Wisk ◽  
Eliza B. Nelson ◽  
Kara M. Magane ◽  
Elissa R. Weitzman
Keyword(s):  
College Students ◽  
Social Media ◽  
Type 1 Diabetes ◽  
Decision Rules ◽  
Health Related ◽  
Social Media Platforms ◽  
Trial Implementation

Background: We sought to quantify the efficiency and acceptability of Internet-based recruitment for engaging an especially hard-to-reach cohort (college-students with type 1 diabetes, T1D) and to describe the approach used for implementing a health-related trial entirely online using off-the-shelf tools inclusive of participant safety and validity concerns. Method: We recruited youth (ages 17-25 years) with T1D via a variety of social media platforms and other outreach channels. We quantified response rate and participant characteristics across channels with engagement metrics tracked via Google Analytics and participant survey data. We developed decision rules to identify invalid (duplicative/false) records (N = 89) and compared them to valid cases (N = 138). Results: Facebook was the highest yield recruitment source; demographics differed by platform. Invalid records were prevalent; invalid records were more likely to be recruited from Twitter or Instagram and differed from valid cases across most demographics. Valid cases closely resembled characteristics obtained from Google Analytics and from prior data on platform user-base. Retention was high, with complete follow-up for 88.4%. There were no safety concerns and participants reported high acceptability for future recruitment via social media. Conclusions: We demonstrate that recruitment of college students with T1D into a longitudinal intervention trial via social media is feasible, efficient, acceptable, and yields a sample representative of the user-base from which they were drawn. Given observed differences in characteristics across recruitment channels, recruiting across multiple platforms is recommended to optimize sample diversity. Trial implementation, engagement tracking, and retention are feasible with off-the-shelf tools using preexisting platforms.

scholarly journals Rapid deployment of a community engagement study and educational trial via social media: implementation of the UC-COVID study

Trials ◽  
2021 ◽  
Vol 22 (1) ◽  
Author(s):  
Lauren E. Wisk ◽  
Russell G. Buhr
Keyword(s):  
Social Media ◽  
Search Activity ◽  
Community Partners ◽  
Community Values ◽  
Sample Representativeness ◽  
Adult Participants ◽  
Health Related ◽  
Social Media Platforms ◽  
Rapid Deployment

Abstract Background In response to the COVID-19 pandemic and associated adoption of scarce resource allocation (SRA) policies, we sought to rapidly deploy a novel survey to ascertain community values and preferences for SRA and to test the utility of a brief intervention to improve knowledge of and values alignment with a new SRA policy. Given social distancing and precipitous evolution of the pandemic, Internet-enabled recruitment was deemed the best method to engage a community-based sample. We quantify the efficiency and acceptability of this Internet-based recruitment for engaging a trial cohort and describe the approach used for implementing a health-related trial entirely online using off-the-shelf tools. Methods We recruited 1971 adult participants (≥ 18 years) via engagement with community partners and organizations and outreach through direct and social media messaging. We quantified response rate and participant characteristics of our sample, examine sample representativeness, and evaluate potential non-response bias. Results Recruitment was similarly derived from direct referral from partner organizations and broader social media based outreach, with extremely low study entry from organic (non-invited) search activity. Of social media platforms, Facebook was the highest yield recruitment source. Bot activity was present but minimal and identifiable through meta-data and engagement behavior. Recruited participants differed from broader populations in terms of sex, ethnicity, and education, but had similar prevalence of chronic conditions. Retention was satisfactory, with entrance into the first follow-up survey for 61% of those invited. Conclusions We demonstrate that rapid recruitment into a longitudinal intervention trial via social media is feasible, efficient, and acceptable. Recruitment in conjunction with community partners representing target populations, and with outreach across multiple platforms, is recommended to optimize sample size and diversity. Trial implementation, engagement tracking, and retention are feasible with off-the-shelf tools using preexisting platforms. Trial registration ClinicalTrials.gov NCT04373135. Registered on May 4, 2020

A long-term evaluation of Facebook for recruitment and retention in the ENDIA type 1 diabetes pregnancy-birth cohort study (Preprint)

2021 ◽  
Author(s):  
Kelly J McGorm ◽  
James David Brown ◽  
Rebecca Louise Thomson ◽  
Helena Oakey ◽  
Belinda Moore ◽  
...  
Keyword(s):  
Social Media ◽  
Type 1 Diabetes ◽  
Logistic Regression ◽  
Birth Cohort ◽  
Multinomial Logistic Regression ◽  
Sociodemographic Characteristics ◽  
Recruitment And Retention

BACKGROUND Recruitment and retention of research participants is challenging. Social media, particularly Facebook, has emerged as a tool for connecting with participants due to its high uptake in the community. The Environmental Determinants of Islet Autoimmunity (ENDIA) study is an Australia-wide prospective pregnancy-birth cohort following children who have a first-degree relative with type 1 diabetes (ACTRN1261300794707). A dedicated Facebook page was established for the ENDIA study in 2013 with the aim to enhance recruitment and support participant retention. OBJECTIVE The purpose of this investigation was to evaluate the long-term impact of Facebook as a recruitment and retention tool. The hypotheses were that (1) Facebook was an important source of referral to the ENDIA study, (2) the sociodemographic characteristics of participants recruited by Facebook would be different from those of participants recruited by other means (i.e., ‘conventional recruits’), and (3) recruitment by Facebook would be associated with long-term retention. We also evaluated the most effective types of Facebook content based on post engagement. METHODS Recruitment of 1511 ENDIA participants was completed in December 2019. Characteristics of participants recruited through Facebook were compared to conventional recruits using linear, logistic, and multinomial logistic regression models. A logistic regression model was used to determine the risk of study withdrawal. Data pertaining to 794 Facebook posts over 7.5 years from June 2013 until December 2020 were extracted using the Facebook ‘Insights’ function for thematic analysis. RESULTS Facebook was the third largest source of referral to the ENDIA study (300/1511; 19.9%) behind in-person clinics (500/1511, 33.1%) and healthcare professional referrals (347/1511, 23.0%). The ENDIA Facebook page had 2337 followers at the close of recruitment. Approximately 20% of these could be identified as participating parents. Facebook recruits were more frequently Australian-born (P<.001) enrolling postnatally (P=.01) and withdrew from the study at a significantly lower rate compared to conventional recruits (4.7% vs 12.3%; P<.001) after a median of follow-up of 3.3 years. CONCLUSIONS Facebook was a valuable recruitment tool for the ENDIA study and participants recruited through Facebook were three times less likely to withdraw during long-term follow-up. The sociodemographic characteristics of Facebook recruits were different to conventional recruits, but perhaps in unintended ways. Facebook content featuring stories and images of participants received the highest engagement despite the fact that most Facebook followers were not enrolled in the study. These findings should inform social media strategies for future cohort studies involving pregnant women and young families, and for type 1 diabetes risk studies. CLINICALTRIAL Australia New Zealand Clinical Trials Registry: ACTRN1261300794707 INTERNATIONAL REGISTERED REPORT RR2-https://doi.org/10.1186/1471-2431-13-124

Analyzing Online Social Support Within the Type 1 Diabetes Community

2018 ◽  
pp. 59-84 ◽  
Author(s):  
Kristin G. Maki ◽  
Aisha K. O'Mally
Keyword(s):  
Social Support ◽  
Social Media ◽  
Type 1 Diabetes ◽  
Heart Disease ◽  
Health Outcomes ◽  
Chronic Illnesses ◽  
Informational Support ◽  
Online Social Support ◽  
Social Media Platforms

Social support has been linked with many health outcomes, ranging from heart disease to depression. Although its importance has been recognized, less is known about how individuals with chronic illnesses may use social media to provide and seek social support. This chapter's focus is on the way in which people with Type 1 diabetes (T1D) use social media to provide and solicit social support. A mixed-methods approach is utilized. First, posts from two social media platforms were qualitatively content analyzed. Second, the data were quantitatively analyzed to provide a finer-grained understanding of the messages. The results show informational support as the most prevalent on both sites, although there are some differences in content and use. This chapter's implications highlight the importance of social media as a conduit for social support among caregivers and individuals affected by T1D.

scholarly journals “It Got Likes, But I Don’t Think People Understood”: A Qualitative Study of Adolescent Experiences Discussing Type 1 Diabetes on Social Media

2020 ◽  
pp. 193229682096558
Author(s):  
Kristen Chalmers ◽  
Mia Smith ◽  
Megan Moreno ◽  
Faisal Malik
Keyword(s):  
Social Media ◽  
Type 1 Diabetes ◽  
Diabetes Management ◽  
Social Consequences ◽  
Structured Interviews ◽  
Daily Lives ◽  
Social Media Engagement ◽  
Social Media Platforms ◽  
Management Advice

Background: The majority of adolescents with type 1 diabetes (T1D) integrate social media engagement into their daily lives. The aim of this study was to explore adolescents’ experiences and perspectives discussing their T1D on social media. Methods: Semi-structured interviews with adolescents with T1D were conducted in person and via telephone. Questions focused on the participant’s experiences utilizing social media to discuss T1D and factors that informed the nature of T1D-related social media engagement. Open coding and thematic content analysis were used to identify emergent themes that aligned with accepted domains of social media affordances. Results: Participants included 35 adolescents with T1D. Adolescents’ experiences related to discussing T1D on social media aligned with four affordances of social media: identity, cognitive, emotional, and social. The identity affordances of social media platforms allowed adolescents to curate online personas that selectively included their diagnosis of T1D, while managing the potential negative emotional and social implications linked to the stigma of T1D. Adolescents who decided to discuss T1D on social media leveraged cognitive affordances by providing and receiving diabetes management advice, emotional affordances by obtaining affirmation from peers, and social affordances by extending their network to include other individuals with T1D. Conclusions: Adolescents with T1D flexibly leverage the affordances offered by social media to access emotional support, information, and identity affirmation resources while navigating stigma-based social consequences. Our findings highlight the value of developing tools to support adolescents with T1D in comfortably discussing and receiving appropriate support about T1D on social media.

scholarly journals Online survey to assess parents’ experience and preferences for follow-up visits for children living with type 1 diabetes in Quebec, Canada: a study protocol

BMJ Open ◽  
2019 ◽  
Vol 9 (10) ◽  
pp. e031185
Author(s):  
Maude Laberge ◽  
Malek Badreddine ◽  
Monia Rekik
Keyword(s):  
Social Media ◽  
Type 1 Diabetes ◽  
Online Survey ◽  
Patient Survey ◽  
Ethics Committee ◽  
Need For Care ◽  
Follow Up Care ◽  
French And English

IntroductionIt is accepted that although patients may initiate a visit to a healthcare provider, follow-up visits are often based on recommendations from providers. This suggests that follow-up care, since not initiated by patients, may not reflect patients’ perception of a need for care. However, few studies have examined the burden of regular follow-up care and patients’ perceived value of such care. For parents of children with type 1 diabetes (T1D), follow-up visits are scheduled regardless of how well controlled the diabetes is. Our study examines how benefits and burden from the parents’ perspective could affect their preferences in regard to the frequency of regular follow-up care.MethodsWe aim to develop an online patient survey to be distributed to parents of children living with T1D in the province of Quebec, Canada. The survey will be available in French and English, and distributed through diabetes clinics, on social media groups and forums for parents of children with T1D. The survey will be developed in collaboration with parents of children with T1D to ensure that it appropriately reflects the services in regular follow-up care and that the language is understandable and clear.Ethics and disseminationAll participants will be informed of the requirements and objectives of the survey at the beginning of the questionnaire and that the data collected will remain anonymous and confidential. Ethics approval for the study was obtained from the research ethics committee of the CHU de Québec-Université Laval. Results of the study will be shared with relevant stakeholders with the aim of improving practices and better meeting patients’ and families’ needs.

scholarly journals Where translation impacts: The non-professional community on Chinese online social media – A descriptive case study on the user-generated translation activity of Bilibili content creators

2021 ◽  
pp. 205943642110006
Author(s):  
Ning Ding ◽  
Zhimiao Yang ◽  
Sida Li ◽  
Ailing Zhang
Keyword(s):  
Social Media ◽  
Professional Community ◽  
Theory Model ◽  
Descriptive Case Study ◽  
Online Social Media ◽  
Collective Activity ◽  
Social Media Platforms ◽  
International Social

This study explored the user-generated translation activity in the context of the Chinese online social media. It focused on Bilibili content creators dedicated to translating public comments on China-related videos posted on international social media platforms such as YouTube, and creating videos featuring Chinese translated comments. Viewing their translation actions as events in a collective activity system, the authors collected data from 30 participants through a questionnaire and follow-up interviews with two participants who have recently worked on videos about China’s fight against Covid-19. All the data were analysed by using Engeström’s activity theory model to create an activity model showing how their user-generated translation activity was conducted. In this study, we observed that the participants, as the non-professional translation community on the Chinese online social media, were breaking down linguistic borders for fans and viewers, and postulated the possible interaction between the user-generated translation work and their better understanding of how the world saw China through grassroots expression of opinions.

scholarly journals Psychoeducational Messaging to Reduce Alcohol Use for College Students With Type 1 Diabetes: Internet-Delivered Pilot Trial

10.2196/26418 ◽  
2021 ◽  
Vol 23 (9) ◽  
pp. e26418
Author(s):  
Lauren E Wisk ◽  
Kara M Magane ◽  
Eliza B Nelson ◽  
Rebecca K Tsevat ◽  
Sharon Levy ◽  
...  
Keyword(s):  
College Students ◽  
Type 1 Diabetes ◽  
Alcohol Use ◽  
Binge Drinking ◽  
Pilot Trial ◽  
Related Factors ◽  
Web Based ◽  
Behavior Change Interventions

Background College environments promote high-volume or binge alcohol consumption among youth, which may be especially harmful to those with type 1 diabetes (T1D). Little is known about the acceptability and effectiveness of interventions targeting reduced alcohol use by college students with T1D, and it is unclear whether intervention framing (specifically, the narrator of intervention messages) matters with respect to affecting behavior change. Interventions promoted by peer educators may be highly relatable and socially persuasive, whereas those delivered by clinical providers may be highly credible and motivating. Objective The aim of this study is to determine the acceptability and impacts of an alcohol use psychoeducational intervention delivered asynchronously through web-based channels to college students with T1D. The secondary aim is to compare the impacts of two competing versions of the intervention that differed by narrator (peer vs clinician). Methods We recruited 138 college students (aged 17-25 years) with T1D through web-based channels and delivered a brief intervention to participants randomly assigned to 1 of 2 versions that differed only with respect to the audiovisually recorded narrator. We assessed the impacts of the exposure to the intervention overall and by group, comparing the levels of alcohol- and diabetes-related knowledge, perceptions, and use among baseline, immediately after the intervention, and 2 weeks after intervention delivery. Results Of the 138 enrolled participants, 122 (88.4%) completed all follow-up assessments; the participants were predominantly women (98/122, 80.3%), were White non-Hispanic (102/122, 83.6%), and had consumed alcohol in the past year (101/122, 82.8%). Both arms saw significant postintervention gains in the knowledge of alcohol’s impacts on diabetes-related factors, health-protecting attitudes toward drinking, and concerns about drinking. All participants reported significant decreases in binge drinking 2 weeks after the intervention (21.3%; odds ratio 0.48, 95% CI 0.31-0.75) compared with the 2 weeks before the intervention (43/122, 35.2%). Changes in binge drinking after the intervention were affected by changes in concerns about alcohol use and T1D. Those who viewed the provider narrator were significantly more likely to rate their narrator as knowledgeable and trustworthy; there were no other significant differences in intervention effects by the narrator. Conclusions The intervention model was highly acceptable and effective at reducing self-reported binge drinking at follow-up, offering the potential for broad dissemination and reach given the web-based format and contactless, on-demand content. Both intervention narrators increased knowledge, improved health-protecting attitudes, and increased concerns regarding alcohol use. The participants’ perceptions of expertise and credibility differed by narrator. Trial Registration ClinicalTrials.gov NCT02883829; https://clinicaltrials.gov/ct2/show/NCT02883829 International Registered Report Identifier (IRRID) RR2-10.1177/1932296819839503

Analyzing Online Social Support Within the Type 1 Diabetes Community

2019 ◽  
pp. 338-358
Author(s):  
Kristin G. Maki ◽  
Aisha K. O'Mally
Keyword(s):  
Social Support ◽  
Social Media ◽  
Type 1 Diabetes ◽  
Heart Disease ◽  
Health Outcomes ◽  
Chronic Illnesses ◽  
Informational Support ◽  
Online Social Support ◽  
Social Media Platforms

Social support has been linked with many health outcomes, ranging from heart disease to depression. Although its importance has been recognized, less is known about how individuals with chronic illnesses may use social media to provide and seek social support. This chapter's focus is on the way in which people with Type 1 diabetes (T1D) use social media to provide and solicit social support. A mixed-methods approach is utilized. First, posts from two social media platforms were qualitatively content analyzed. Second, the data were quantitatively analyzed to provide a finer-grained understanding of the messages. The results show informational support as the most prevalent on both sites, although there are some differences in content and use. This chapter's implications highlight the importance of social media as a conduit for social support among caregivers and individuals affected by T1D.

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