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.

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 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.

924-P: A Latent Class Analysis of Adolescent Preferences on Social Media Use by Diabetes Care Teams to Support Type 1 Diabetes Management

Diabetes ◽  
2021 ◽  
Vol 70 (Supplement 1) ◽  
pp. 924-P
Author(s):  
FAISAL MALIK ◽  
ALICE M. ELLYSON ◽  
DIMITRI CHRISTAKIS ◽  
RITA MANGIONE-SMITH ◽  
CATHERINE PIHOKER ◽  
...  
Keyword(s):  
Social Media ◽  
Type 1 Diabetes ◽  
Latent Class Analysis ◽  
Diabetes Care ◽  
Latent Class ◽  
Diabetes Management ◽  
Media Use ◽  
Class Analysis ◽  
Social Media Use

scholarly journals Self-care support for the management of type 1 diabetes during the transition from childhood to adolescence

2018 ◽  
Vol 52 (0) ◽  
Author(s):  
Neusa Collet ◽  
Annanda Fernandes de Moura Bezerra Batista ◽  
Vanessa Medeiros da Nóbrega ◽  
Maria Helena do Nascimento Souza ◽  
Leiliane Teixeira Bento Fernandes
Keyword(s):  
Type 1 Diabetes ◽  
Health Care Professionals ◽  
Diabetes Management ◽  
Self Care ◽  
Family Health ◽  
Lifestyle Changes ◽  
Self Awareness ◽  
Structured Interviews ◽  
Care Support

ABSTRACT Objective: To analyze the needs of pre-adolescents with type 1 diabetes regarding self-care support for disease management. Method: Qualitative study conducted between October and December 2016 with pre-adolescents seen at a hospital outpatient clinic and at Family Health Units; semi-structured interviews were used. Data were analyzed using a thematic analysis based on the theoretical basis of self-care support. Results: Nine pre-adolescents participated in the study. It was identified that in order to build self-efficacy, pre-adolescents need to overcome the disease denial phase, know how to handle feelings triggered by the need for lifestyle changes, receive support from their families and social networks, and have the self-awareness and self-perception needed to feel secure in managing their diabetes. Conclusion: The intrinsic challenges of adolescence and the way pre-adolescents with diabetes handle the disease have an influence on diabetes management and create needs that must be appreciated by health care professionals in order to provide self-care support.

scholarly journals Adolescent Perspectives on the Use of Social Media to Support Type 1 Diabetes Management: Focus Group Study

10.2196/12149 ◽  
2019 ◽  
Vol 21 (6) ◽  
pp. e12149 ◽  
Author(s):  
Faisal S Malik ◽  
Neil Panlasigui ◽  
Jesse Gritton ◽  
Harsimrat Gill ◽  
Joyce P Yi-Frazier ◽  
...  
Keyword(s):  
Social Media ◽  
Type 1 Diabetes ◽  
Focus Group ◽  
Diabetes Management ◽  
Focus Group Study ◽  
Use Of Social Media

scholarly journals Understanding the Lived Experience of Children With Type 1 Diabetes in Kenya: Daily Routines and Adaptation Over Time

2021 ◽  
pp. 104973232110497
Author(s):  
Tom Palmer ◽  
Cynthia Waliaula ◽  
Geordan Shannon ◽  
Francesco Salustri ◽  
Gulraj Grewal ◽  
...  
Keyword(s):  
Type 1 Diabetes ◽  
Focus Group ◽  
Lived Experience ◽  
Diabetes Management ◽  
Structured Interviews ◽  
Focus Group Discussions ◽  
Group Discussions ◽  
Daily Routines ◽  
Over Time

Focusing only on biomedical targets neglects the important role that psychosocial factors play in effective diabetes self-management. This study aims to understand the lived experiences of children with Type 1 Diabetes (T1DM) in Kenya. Children ( n = 15) participated in focus group discussions and photo diary data collection. Focus group discussions and semi-structured interviews were also conducted with caregivers ( n = 14). We describe an adaptation to diabetes over time, identifying four overarching themes: knowledge and awareness, economic exclusion, the importance of social support, and striving for normality. Photo diaries are then categorized to explore daily realities of diabetes management. Children with T1DM in Kenya face varied barriers to care but can lead a “normal” and fulfilling life, provided adequate support is in place. To improve the lives of children with diabetes in this context and others like it, stakeholders must take note of children’s experiences and recognize their multidimensional needs.

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.

scholarly journals Augmenting Traditional Support Groups for Adolescents With Type 1 Diabetes Using Instagram: Mixed Methods Feasibility Study

JMIR Diabetes ◽  
10.2196/21405 ◽  
2021 ◽  
Vol 6 (4) ◽  
pp. e21405
Author(s):  
Faisal S Malik ◽  
Cara Lind ◽  
Sarah Duncan ◽  
Connor Mitrovich ◽  
Michael Pascual ◽  
...  
Keyword(s):  
Social Media ◽  
Type 1 Diabetes ◽  
Support Groups ◽  
Support Group ◽  
Diabetes Management ◽  
Future Research ◽  
Group Model ◽  
Group Sessions ◽  
Use Of Social Media

Background In-person support groups have been shown to benefit adolescents with type 1 diabetes (T1D) by helping to decrease perceived diabetes burden and improving knowledge related to chronic disease management. However, barriers exist to participation in traditional support groups, including the timing and location of meetings and resources needed to attend. Adolescents are increasingly utilizing online support groups, which may provide solutions to some of the challenges faced when implementing in-person support groups. Objective The purpose of this study was to assess the feasibility and acceptability of a hybrid support group model where traditional in-person support groups were augmented with Instagram participation between monthly support group sessions for adolescents with T1D. Methods Participants (13-18 years old with T1D for ≥6 months) were asked to post photos each week for 3 months based on predetermined topics related to diabetes management. At the end of each month, participants attended an in-person support group to discuss their photos using the Photovoice method. Feasibility was assessed through enrollment and retention, number of Instagram posts, poststudy questionnaire, and a template analysis of the focus groups. Results Of 24 eligible participants, 16 (67%) enrolled in the study, with 3 dropping out prior to support group participation. The number of photos posted over 3 months ranged from 14 to 41. Among the 11 participants who completed a follow-up questionnaire, the majority of participants (6/11, 55%) reported that they very much enjoyed participating in the hybrid support group, and more than three-quarters (9/11, 82%) of participants reported that they “related to the photos posted.” Over half of participants (8/11, 73%) reported “learning something new from the photos posted,” which arose from sharing knowledge and experiences related to navigating the common challenges of diabetes management. Additionally, the use of Instagram posts helped facilitate peer discussions during the in-person support groups. Conclusions The novel combination of using Instagram to augment traditional in-person support groups was feasible and acceptable to adolescents with T1D. The overall satisfaction with the hybrid support group model, combined with the observed engagement with peers between support group sessions over social media, suggests that a hybrid support group model may have the potential to provide more pronounced benefits to adolescents than in-person meetings alone. Future research should investigate the use of social media as part of the support group model and examine the potential improvement of self-esteem, benefit-finding, and social support using validated tools in adolescents with diabetes.

scholarly journals Augmenting Traditional Support Groups for Adolescents With Type 1 Diabetes Using Instagram: Mixed Methods Feasibility Study (Preprint)

2020 ◽  
Author(s):  
Faisal S Malik ◽  
Cara Lind ◽  
Sarah Duncan ◽  
Connor Mitrovich ◽  
Michael Pascual ◽  
...  
Keyword(s):  
Social Media ◽  
Type 1 Diabetes ◽  
Support Groups ◽  
Support Group ◽  
Diabetes Management ◽  
Future Research ◽  
Group Model ◽  
Group Sessions ◽  
Use Of Social Media

BACKGROUND In-person support groups have been shown to benefit adolescents with type 1 diabetes (T1D) by helping to decrease perceived diabetes burden and improving knowledge related to chronic disease management. However, barriers exist to participation in traditional support groups, including the timing and location of meetings and resources needed to attend. Adolescents are increasingly utilizing online support groups, which may provide solutions to some of the challenges faced when implementing in-person support groups. OBJECTIVE The purpose of this study was to assess the feasibility and acceptability of a hybrid support group model where traditional in-person support groups were augmented with Instagram participation between monthly support group sessions for adolescents with T1D. METHODS Participants (13-18 years old with T1D for ≥6 months) were asked to post photos each week for 3 months based on predetermined topics related to diabetes management. At the end of each month, participants attended an in-person support group to discuss their photos using the Photovoice method. Feasibility was assessed through enrollment and retention, number of Instagram posts, poststudy questionnaire, and a template analysis of the focus groups. RESULTS Of 24 eligible participants, 16 (67%) enrolled in the study, with 3 dropping out prior to support group participation. The number of photos posted over 3 months ranged from 14 to 41. Among the 11 participants who completed a follow-up questionnaire, the majority of participants (6/11, 55%) reported that they very much enjoyed participating in the hybrid support group, and more than three-quarters (9/11, 82%) of participants reported that they “related to the photos posted.” Over half of participants (8/11, 73%) reported “learning something new from the photos posted,” which arose from sharing knowledge and experiences related to navigating the common challenges of diabetes management. Additionally, the use of Instagram posts helped facilitate peer discussions during the in-person support groups. CONCLUSIONS The novel combination of using Instagram to augment traditional in-person support groups was feasible and acceptable to adolescents with T1D. The overall satisfaction with the hybrid support group model, combined with the observed engagement with peers between support group sessions over social media, suggests that a hybrid support group model may have the potential to provide more pronounced benefits to adolescents than in-person meetings alone. Future research should investigate the use of social media as part of the support group model and examine the potential improvement of self-esteem, benefit-finding, and social support using validated tools in adolescents with diabetes.

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