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

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

10.2196/preprints.21405 ◽

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

Journal of Medical Internet Research ◽

10.2196/12149 ◽

2019 ◽

Vol 21 (6) ◽

pp. e12149 ◽

Cited By ~ 1

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

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Should I post this on Instagram?: Contrasting Social Media Use between Young adults with IBD and Type 1 Diabetes (Preprint)

10.2196/preprints.28881 ◽

2021 ◽

Author(s):

Susruthi Rajanala ◽

Jennifer Wilson ◽

Paul Mitchell ◽

Katharine Garvey ◽

Laurie Fishman

Keyword(s):

Social Media ◽

Type 1 Diabetes ◽

Young Adults ◽

Support Groups ◽

Information Seeking ◽

Cross Sectional Study ◽

Cross Sectional ◽

Disease Information ◽

Media Habits

BACKGROUND There is increasing focus on social media usage among young adult patients. OBJECTIVE This study aims to understand and compare the social media habits of youth with inflammatory bowel disease (IBD) and type 1 diabetes (T1D). METHODS This is a cross-sectional study of subjects from Boston Children’s Hospital outpatient IBD and diabetes clinics. Patients over the age of 18 were invited to complete a brief anonymous survey, which asked about the various ways they use several social media platforms. RESULTS A total of 108 patients were included evenly split across disease type. Eighty-three percent of participants spent at least 30 minutes per day on social media, most commonly on Instagram and Facebook. While the content varied based on the platform, patients with IBD posted or shared content related to their disease significantly less than those with T1D (38% vs 23%, P=0.02) Among Instagram users, IBD patients were less likely to engage with support groups (22% vs 56%, P=0.04). Among Twitter users, IBD patients were less likely to seek disease information (77% vs 29%, P=0.005) Among Facebook users, IBD patients were less likely to post about research and clinical trials (31% vs 65%, P=0.04) or for information seeking (49% vs 87%, P=0.003), IBD patients were also less likely to share their diagnosis with friends or family in person. CONCLUSIONS Young adults with IBD were less willing to share diagnosis, post or explore disease on social media. This could lead to a sense of isolation and should be further explored.

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

Journal of Diabetes Science and Technology ◽

10.1177/1932296820965588 ◽

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.

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Relations Between the Use of Electronic Health and the Use of General Practitioner and Somatic Specialist Visits in Patients With Type 1 Diabetes: Cross-Sectional Study (Preprint)

10.2196/preprints.11322 ◽

2018 ◽

Author(s):

Anne Helen Hansen ◽

Jan Broz ◽

Tor Claudi ◽

Eirik Årsand

Keyword(s):

Health Care ◽

Social Media ◽

Type 1 Diabetes ◽

Search Engines ◽

Health Care Services ◽

Future Research ◽

Care Services ◽

Specialist Services ◽

Ehealth Services

BACKGROUND The prevalence of diabetes and the use of electronic health (eHealth) are increasing. People with diabetes need frequent monitoring and follow-up of health parameters, and eHealth services can be of great value. However, little is known about the association between the use of eHealth and provider-based health care services among people with diabetes. OBJECTIVE The objective of this study was to investigate the use of 4 different eHealth platforms (apps, search engines, video services, and social media sites) and associations with the use of provider-based health care visits among people diagnosed with type 1 diabetes mellitus (T1DM). METHODS We used email survey data collected from 1250 members of the Norwegian Diabetes Association (aged 18 to 89 years) in 2018. Eligible for analyses were the 523 respondents with T1DM. Using descriptive statistics, we estimated the use of eHealth and the use of general practitioners (GPs) and somatic specialist outpatient services. By logistic regressions, we studied the associations between the use of these provider-based health services and the use of eHealth, adjusted for gender, age, education, and self-rated health. RESULTS Of the sample of 523 people with T1DM, 90.7% (441/486) had visited a GP once or more, and 61.0% (289/474) had visited specialist services during the previous year. Internet search engines (such as Google) were used for health purposes sometimes or often by 84.0% (431/513), apps by 55.4% (285/514), social media (such as Facebook) by 45.2% (232/513), and video services (such as YouTube) by 23.3% (118/506). Participants aged from 18 to 39 years used all forms of eHealth more than people aged 40 years and older, with the exception of social media. The use of search engines was positively associated with the use of somatic specialist services (odds ratio 2.43, 95% CI 1.33-4.45). GP visits were not associated with any kind of eHealth use. CONCLUSIONS eHealth services are now widely used for health support and health information by people with T1DM, primarily in the form of search engines but often in the form of apps and social media as well. We found a positive association between the use of search engines and specialist visits and that people with T1DM are frequent users of eHealth, GPs, and specialist services. We found no evidence that eHealth reduces the use of provider-based health care; these services seem to be additional rather than alternative. Future research should focus on how health care services can meet and adapt to the high prevalence of eHealth use. Our results also indicate that many patients with T1DM do not visit specialist clinics once a year as recommended. This raises questions about collaboration in health care services and needs to be followed up in future research.

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

Diabetes ◽

10.2337/db21-924-p ◽

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

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Support Group for Parents Coping with Children with Type 1 Diabetes / Skupina Za Starše Kot Podpora Družinam Pri Soočanju Z Otrokovo Sladkorno Boleznijo Tipa 1

Slovenian Journal of Public Health ◽

10.1515/sjph-2015-0012 ◽

2015 ◽

Vol 54 (2) ◽

pp. 79-85 ◽

Cited By ~ 2

Author(s):

Tanja Pate ◽

Miha Rutar ◽

Tadej Battelino ◽

Maja Drobnič Radobuljac ◽

Nataša Bratina

Keyword(s):

Type 1 Diabetes ◽

Support Group ◽

Parental Support ◽

Diabetes Management ◽

Good Practice ◽

Evaluation Questionnaire ◽

The Family ◽

Almost All ◽

The Impact

Abstract Objectives. Type 1 diabetes is one of the most common chronic diseases in childhood. Active parental involvement, parental support in the diabetes management and family functioning are associated with optimal diabetes management and glycemic control. The purpose of this study was to assess parental satisfaction with participation in the group and their perceptions of the impact of the intervention on living and coping with childrens T1D. Methods. A sample of 34 parents of children with T1D participated in this trend study. The participants’ experience and satisfaction with support group was measured by a self- evaluation questionnaire, designed for the purpose of the present study. Results. Quantitative data show that parents were overall satisfied with almost all measured items of the evaluation questionnaire (wellbeing in the group, feeling secure, experiencing new things, being able to talk and feeling being heard) during the 4-year period. However, parents from the second and third season, on average, found that the support group has better fulfilled their expectations than the parents from the first season (p = 0,010). The qualitative analysis of the participants’ responses to the open-ended questions was underpinned by four themes: support when confronting the diagnosis, transformation of the family dynamics, me as a parent, exchange of experience and good practice and facing the world outside the family. Discussion. The presented parent support group showed to be a promising supportive, therapeutic and psychoeducative space where parents could strengthen their role in the upbringing of their child with T1D.

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Parents’ experiences of caring for a young child with type 1 diabetes: a systematic review and synthesis of qualitative evidence

BMC Pediatrics ◽

10.1186/s12887-021-02569-4 ◽

2021 ◽

Vol 21 (1) ◽

Author(s):

B. Kimbell ◽

J. Lawton ◽

C. Boughton ◽

R. Hovorka ◽

D. Rankin

Keyword(s):

Type 1 Diabetes ◽

Management Practices ◽

Diabetes Management ◽

Sociodemographic Factors ◽

Future Research ◽

Perceived Need ◽

Qualitative Evidence ◽

Practical Support ◽

Parents Experiences

Abstract Aims To synthesise the qualitative evidence on parents’ experiences of caring for a child aged ≤8 years with type 1 diabetes to identify: the challenges they encounter; their views about support received; ways in which support could be improved; and, directions for future research. Methods We searched Medline, EMBASE, CINAHL, PsycINFO and Web of Science databases to identify qualitative studies reporting parents’ views and experiences of caring for a child with type 1 diabetes aged ≤8 years. Key analytical themes were identified using thematic synthesis. Results Fourteen studies were included. The synthesis resulted in the generation of two overarching themes. Monopolisation of life describes the all-encompassing impact diabetes could have on parents due to the constant worry they experienced and the perceived need for vigilance. It describes how parents’ caring responsibilities could affect their wellbeing, relationships and finances, and how a lack of trusted sources of childcare and a desire to enable a ‘normal’ childhood constrained personal choices and activities. However, use of diabetes technologies could lessen some of these burdens. Experiences of professional and informal support describes how encounters with healthcare professionals, while generally perceived as helpful, could lead to frustration and anxiety, and how connecting with other parents caring for a child with type 1 diabetes provided valued emotional and practical support. Conclusions This synthesis outlines the challenges parents encounter, their views about support received and ways in which support might be improved. It also highlights significant limitations in the current literature and points to important areas for future research, including how sociodemographic factors and use of newer diabetes technologies influence parents’ diabetes management practices and experiences. PROSPERO: https://www.crd.york.ac.uk/prospero/display_record.php?ID=CRD42019128710

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