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

Abstract

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.

Introduction

As adolescents increasingly engage in social media, the cultivation of an online persona and feedback from peers has become integral to their interpersonal relationships and identity development.^1-4 For adolescents with marginalized identities or non-normative life experiences, social media is a uniquely complicated space to find others to connect over shared experiences while simultaneously navigating societal stigma.^5,6 One population that potentially experiences social media in this nuanced manner are adolescents with type 1 diabetes (T1D). While the importance of social media for many chronically ill individuals is established,^7,8 including those with T1D,^9-12 the social media experiences of adolescents with T1D have not been fully explored. ¹³

The majority of adolescents with T1D struggle to meet recommended targets for glycemic control. ¹⁴ Social media offers unique affordances (ie, functions and features of different social media apps that can be recognized by users) to adolescents with T1D in supporting their chronic disease management and overall well-being.^15,16 For example, curating an online portrayal one’s self, with or without the inclusion of T1D, is part of some platforms’ identity affordances. The cognitive affordances, or the ability for social media platforms to expand one’s learning, may help connect adolescents with T1D with accessible medical information, potentially fulfilling informational needs that are not typically met in offline environments. ¹⁷ Social affordances of certain platforms can promote network-informed associations, which offer the potential for adolescents to expand their social circle to include peers with T1D. ¹⁸ However, in order to benefit from these potential affordances of social media, adolescents with diabetes may face unexplored and complex challenges in navigating social media environments.

Specifically, social media’s emotional affordances, or the ability of social media to provoke emotional reactions, are known to impact adolescent users’ loneliness, body image, and relationship maintenance.^19,20 This is of particular concern in adolescents with T1D, who experience a greater incidence of depression, anxiety, psychological distress, and eating disorders compared to peers without diabetes.^21,22 Additionally, while the daily demands of managing T1D are significant, ²³ this aspect of the lived experience of adolescents with T1D is foreign to the majority of their peers. Therefore, adolescent users’ experiences with T1D may deviate from mutually relatable and self-promoting content that is typically shared on social media. ²⁴

Given that nearly ubiquitous social media engagement is reshaping adolescent social, emotional, and identity development,^19,25-27 it is important to understand the social media experiences of adolescents with T1D. Qualitative studies can allow for a more complete understanding of how adolescents with T1D choose to portray their chronic illness on social media and the impact of these online experiences. The aim of this study was to explore adolescents’ experiences and perspectives discussing their T1D on social media.

Methods

Study Design

This qualitative study used semi-structured interviews to collect data about adolescents’ experiences and perspectives. The interviews were part of a larger project to develop a survey exploring using social media to support adolescents with T1D with their diabetes management. Semi-structured interviews provide a methodology to gain subjective or experiential knowledge about a topic while remaining responsive to the participant and allowing participants to articulate the ways they were making meaning out of their experiences.^28,29 Our methods are reported according to the Consolidated Criteria for Reporting Qualitative Research. ³⁰ The Seattle Children’s Research Institute Institutional Review Board approved the study procedures and ensured that ethical principles were applied to research activities.

Study Participants and Recruitment

Potential participants were identified through Seattle Children’s Hospital’s medical records. Study mailers describing the opportunity to participate in an interview was sent to 884 English-speaking adolescents (aged 13-18 years) with a T1D diagnosis. The first 36 adolescents to contact the research team were consented to participate. One consented participant was lost to follow-up and did not complete the interview for a final sample of 35 adolescents.

No current or previous experience with social media was required for participation. Our goal was to allow for a range of viewpoints, including those of adolescents with little or no social media experience and those who did not discuss diabetes on social media. Participants were given the option to participate in either in-person or phone interviews.

Eighteen-year-old participants gave informed written consent and youth participants provided written assent and caregiver written consent before study enrollment. Participants were compensated $75 for in-person interviews and $50 for phone interviews. Demographic data were collected from participants’ medical records.

Interview Guide Development

The research team consisted of a male pediatric endocrinologist with health services and qualitative research training (FM), a female adolescent medicine physician and investigator with significant social media and qualitative research experience (MM), a female clinical research assistant with medical anthropology research experience (KC), and a female undergraduate research intern who is part of the local Seattle T1D community (MS).

A semi-structured guide was developed by the research team to explore adolescents’ experiences discussing T1D on social media, with a focus on participant’s rationale for their utilization of social media to discuss T1D and the factors that informed the nature of T1D-related social media engagement. ³¹ Open-end questions explored participant’s current and past diabetes-related social medial behaviors, as well as the responses they received from their peers about their social media posts. Adolescents who did not use social media were asked to explore their rationale and how they thought their peers would hypothetically react if they were to share information about T1D on social media.

Data Collection and Analysis

Interviews were conducted between January and April 2019. In-person interviews were conducted in private conference rooms at the research institute or at the local children’s hospital where most participants received their diabetes care. Interviews lasted between 28 and 79 minutes (average length: 42.5 minutes, standard deviation [SD]: 14.6 minutes) and were audio recorded. The research team conducted biweekly debriefs to discuss interview summaries. Participant recruitment ended when no new findings were identified in the debriefing sessions. ³² Interviews were digitally recorded and portions related to adolescents’ experiences discussing T1D on social media were transcribed verbatim.

Emergent concepts were identified using an open coding and thematic content analysis approach.^33-35 Steps to codebook development were as follows: initial codes were derived from study goals and interview questions; codes were adapted and augmented by a review of a quarter of the initial transcriptions; codes were tested on additional transcriptions by both coders; the codebook was edited as appropriate until a complete code list was reached. Coders were blind to each other’s coding and all differences were resolved by discussion until 100% agreement was reached. When necessary, the codebook was modified to accommodate new codes or definitions. During synthesis, coded excerpts were summarized into themes. After identifying these themes it was determined that they align with accepted domains of social media affordances and the themes were mapped onto the domains of identity affordances, cognitive affordances, emotional affordances, and social affordances. ¹⁸

Results

The study included 35 adolescents with a mean age of 14.9 (SD 1.7) years (Table 1). Twenty interviews were conducted in person and 15 were conducted over the phone. Out of 35 participants, 21 (60%) were non-Hispanic White, 18 (51%) were male, and 9 (26%) were on public insurance plans.

Table 1.

Participant Demographic Data.

Adolescent characteristics (n = 35)	n (%)
Age (mean, standard deviation)	14.9, 1.7
Racial background
White, non-Hispanic	21 (60.0)
Non-white, non-Hispanic	11 (31.4)
Prefer not to answer	3 (8.6)
Sex
Female	17 (48.6)
Male	18 (51.4)
Insurance
Private	26 (74.3)
Public	9 (25.7)

Identity Affordances

The majority of participants articulated how social media presents opportunities for identity development and portraying themselves as an individual with T1D. Many expressed that their approach toward incorporating diabetes into their online identity was related to their offline philosophies on sharing information about their chronic condition. For individuals who described themselves as “open about [T1D]” or “sharing [their diagnosis] with everyone,” discussing diabetes online felt like a natural extension of their offline interactions:

Everyone in my grade knows [I have T1D] because I’m a loud person. I’m not anywhere close to an introvert. So, I talk about it [on social media].—13-year-old male

Among participants who used social media as a venue to discuss diabetes, there was a spectrum of perspectives regarding when, where, and with whom they felt comfortable including T1D as part of their online identity (Table 2). Some made diabetes central to their public profiles, while others felt it was only appropriate to post on specific occasions, such as the anniversary of their diagnosis or T1D fundraising events.

Table 2.

Types of Content Incorporating T1D Into Social Media Identity.

Type of content	Representative quotes
Diabetes as part of biography or username	When you have an Instagram [account], you set your profile and you type about yourself and I put that I’m diabetic on there.—13-year-old male
	A girl I went to middle school with has [information about the fact that she has diabetes in] her Instagram handle. . .some people have their handles as their real names and then have type 1 in their bio.—17-year-old female
	Some people just use the syringe with the blood coming out it, like the emoticon [in the bio section of their profile.]—16-year-old male
Diabetes-related activities	[I would share] a picture of me and my friends at [T1D fundraising 5K]. Stuff like that. It’s not like trying to tell my followers about diabetes I guess. It’s more just about what we did, not necessarily about having diabetes, more like because of diabetes we did this today, or if we raised a lot of money or it, then I’d like I’d try to explain that.—13-year-old male
	I’ve made posts about going to camp with other diabetics or that I’m with my “dia-besties.”—16-year-old female
Diabetes lived experience—daily self-care frustrations (“rants”)	[Other adolescents with diabetes social media posts] are just like, “Don’t you love a 500 [mg/dL] blood sugar?” And it’s like a picture of them holding their pump in their hand. And you’re like, “Great, yeah, love that.”—15-year-old male
	I recently posted a video on my social media about how much garbage comes out of having diabetes. Even like just a month. I made the video myself. I was saving up all the test strips, all of the insulin vials of used for changing my pump, spread them out on the floor and took a video of how much it is.—13-year-old male
Diabetes lived experience (“diabetes journey”)	I’ve always had a positive outlook on [diabetes] so I think I could share that with [younger youth with diabetes]. I have been living with it for a while, it’s second nature. That’s the mood I would want [my followers] to get out of [my posts]. Show it who’s boss.—16-year-old male
	My family and I try to make it into a positive thing. I have made it 6 years [and] post it on my Instagram story or my public profiles. [I’ll share that] I made it 6 years and that there has been so much improvement. . . Instagram is mainly the area where I post like positive quotes and positive messages and my diabetes journey and stuff.—17-year-old female
Humor	[I post] lots of jokes about it so I can kinda make it seem like it’s less of a big deal and kinda normalize it. . . I just have to eliminate that chance [of bullying] by like making fun of me before they do.—15-year-old male
	I just post like jokes and relatable stuff for diabetics. . . When it comes to my diabetic page, I just hope it makes someone laugh. . .. It’s just a bunch of memes.—14-year-old female

Overall, participants described social media as a place to share about their lived experience with diabetes management. For some, this took the form of “rants” about their frustrations with daily self-care, while others described sharing about their “diabetes journey.” By being transparent about both their struggles and successes, participants expressed that they hoped to inspire their peers coping with their own challenges.

Finally, some adolescents used comedic posts to relate to their peers with and without diabetes. Humor was used to lightheartedly connect with other adolescents with diabetes and was even described as an active strategy to avoid identity-based bullying:

[I post] lots of jokes about it so I can kinda make it seem like it’s less of a big deal and kinda normalize it. . . I just have to eliminate that chance [of bullying] by like making fun of me before they do.—15-year-old male

In discussing considerations of how to portray their identity on social media, participants reflected on how disclosing their status as someone who has T1D shaped their offline social identity and interactions. Participants described how misinformation about T1D can lead to peers “looking differently” at them, policing their behavior, or making assumptions about the cause of their diabetes:

People don’t understand. Most people think you have to be overweight to have diabetes and they’re like, “How do you have diabetes? You’re not fat.” If I hung out with them and we were gonna eat and they’re like “You can’t have, that it has sugar.—14-year-old female

While some adolescents avoided discussing their diagnosis on social media, others embraced opportunities to challenge assumptions on social media. They saw posts about T1D as a tool that could be utilized to educate peers and reshape stigma, thus allowing them to be more comfortable in their identity:

[Posting about T1D] sparks some positive discussions, which would be good because I know that people are interested in it because not everyone knows about it that much.—16-year-old male

The significance of defining their own story by deciding what aspects of their lives to share was also highlighted by adolescents who elected not to discuss their diagnosis on social media. The identity affordances of social media platforms provided a venue where adolescents could focus on other selected aspect of their identity and daily lives, thus allowing adolescents to define themselves in ways beyond their chronic disease:

Like if I meet a new person, [diabetes] won’t be the first thing I talk about. It’s not like “Hey, I’m [name] and I have diabetes.” ‘Cause it’s not like who I am. It’s just something I have to deal with.—16-year-old male

Cognitive Affordances

When discussing their experiences on social media, adolescents with T1D shared how social media use allowed them to expand their social interactions to include others with T1D through actively joining diabetes-focused pages and groups. Some connections also formed as a result of sharing about T1D on public profile and feeds. For example, one adolescent who made posts about diabetes on her Instagram page was approached for advice by a younger schoolmate:

I had a boy DM (direct message) me saying, “Hey, I saw you have diabetes. I was just diagnosed a little while ago. How do you feel about transitioning from shots to an insulin pump?” I got to explain that to him and my view on it.—17-year-old female

While there was diversity in how adolescents found and interacted with other youth with diabetes on social media, there was a consensus that these interactions with others who could “speak type 1 diabetes” provided experiential knowledge that served a valuable cognitive function that was distinct from information from non-social media sources:

It’s nice hearing things from people who have lived it. Like my endocrinologist, she is going by the book. But bodies aren’t the book.—16-year-old female

Emotional Affordances

Adolescents’ experiences in discussing T1D on social media were shaped by attributes of social media that allow users to share emotional aspects of chronic disease management. Participants described how prior and anticipated emotional responses to T1D-related posts shaped their experiences discussing T1D on social media. In some cases, feedback from peers in the form of comments and likes served as affirmation of the poster’s resilience and the acceptability of discussing T1D on social media:

[When I post about T1D] it’s more like, “Oh, you are so strong for going through this, you’re an inspiration to people, you’re really encouraging, thank you for sharing your story.”—17-year-old female

However, some adolescents reflected on how support in the form of comments and likes felt superficial. Given that many members of their social media communities do not understand the burden of diabetes management, even positive responses could create feelings of alienation:

[Other social media users] would be like, “Do your best” or “You’re doing wonderful!” But a lot of people don’t know, and I feel like that makes you feel a little bit more alone.—16-year-old female

[My post about T1D] got likes, but I don’t think people understood.—13-year-old male

The anticipated reactions of peers who do not understand adolescents’ experiences with T1D were described as a major deterrent to openness on social media. Concerns about negative emotional reactions to discussing T1D on social media fell into two major categories: (1) the violation of norms for appropriate social media content and (2) stigma related to T1D.

Many participants expressed that sharing nonrelatable, personal content would be perceived by peers as “awkward,” “random,” “a waste of time,” and “not-super-share-worthy.” They reflected that their decision to not post about T1D was based on a desire to not “clog peoples’ feeds.” Some adolescents worried that discussing their condition would violate social norms by being perceived as attention-seeking or complaining:

If you break your finger and then you’re posting about your trauma on Instagram you’re just out to get attention. There’s nothing for me to like post about, I don’t do like blood sugar updates on my story or anything.—13-year-old male

Hesitation about discussing T1D on social media was also linked to adolescents’ concerns about diabetes-related stigma. Some worried that being open about their disease would lead to cyberbullying:

I have always gotten bullied for it (T1D), so I keep it on the down low on social media.—18-year-old female

Social Affordances

While some experiences on social media recapitulated or amplified participants’ feelings of isolation within their peer groups, social media’s social affordances provided adolescents with tools to cultivate a sense of belonging. Some participants reported using social media to maintain relationships formed in offline environments, such as summer camps for youth with diabetes, and others reported joining or creating diabetes-focused pages. By connecting adolescents with other individuals with T1D, social media provided social solidarity:

[Other adolescents with T1D] know pretty much exactly what you’re going through. . .They actually know that you know ironically, the bloody truth, it [is] a unification thing.—16-year-old female

Participants also described how they used the social affordances of different platforms in audience management, or utilizing of platform settings to control who could see and respond to diabetes-related posts. Some participants had dual identities on the same platform: a “personal” profile and a diabetes-centered profile. Their diabetes-centered profile was used to share content targeted to other group insiders as opposed to material intended to “inform people” who do not have diabetes. Others utilized privacy features to target posts or messages toward only close friends or others with diabetes. One adolescent articulated the importance of this specific type of autonomy afforded by the features and settings of social media:

Snapchat has a feature where you can block people from seeing your story and stuff, so I am comfortable [discussing T1D] because I can control who sees what. . . Being diabetic, you [have] already lost so much of that control. . . so many of our life choices are just taken away. Having some power over it is really important for us.—18-year-old female

Discussion

Our results highlight how adolescents with T1D flexibly leverage the affordances offered by social media to meet their individual needs related to support with their chronic disease. We found that adolescents with T1D make diverse choices when integrating diabetes into their social media identity, which are routinely informed by offline positive and negative experiences with sharing their T1D diagnosis. Further, social media offered our participants an arena to both seek out and provide tailored educational and social support around chronic disease management. Collectively, these findings point to the value of providing support to adolescents with T1D in developing strategies to comfortably discuss T1D and receiving appropriate diabetes management advice and emotional support from peers on social media.

Peer relationships, and the associated validation of an identity that is personally meaningful, have been described as the primary developmental task of adolescence. ²⁷ As social media becomes a primary context for both publicly articulating one’s identity and for receiving peer feedback, our results highlight how identity development on social media contributes to these social and developmental processes.^36,37 Our participants chose to use social media to tell a range of stories about how diabetes fit into their lives. While many adolescents incorporated T1D in their profiles, others omitted their medical condition from their online persona completely to emphasize other aspects of their identity. These findings highlight how the social media identity development process is particularly significant for adolescent with T1D as they attempt to accept their diagnosis and integrate diabetes as a normalized aspect of their daily lives. ³⁸

Adolescents’ decisions about how to present their identity as someone with T1D were commonly complicated by social stigma surrounding diabetes. Our participants’ concerns were often rooted in the widespread misunderstanding about T1D being related to lifestyle factors (ie, poor diet and exercise) and how “outing” themselves as someone with diabetes online could lead to peers offering unsolicited and sometimes negative health advice.^39,40 However, some adolescents saw posting about their diagnosis on social media as an opportunity to educate peers and to challenge stigma. By posting about their own experiences with T1D, their actions aligned with the experiences of individuals with other chronic diseases who risk being taken as representatives of the labels they are often are working to remove in order to add their personal story and nuance to the stereotypes about their disease. ⁴¹

Many participants’ enthusiasm about using social media to give or receive advice from others with T1D is indicative of the value of online support in diabetes management, or the cognitive affordances of social media. Paralleling the motivations and experiences of adults with diabetes and other people with chronic illnesses, experiential knowledge sharing on social media provided participants with information about disease management.^41,42 Social media’s function as an accessible and relatable knowledge source distinguished it from offline information sources. For patients managing chronic diseases, peers on social media can be utilized according to situational and individual day-to-day needs. ⁸ This was particularly salient for adolescents with T1D, as day-to-day needs around managing diabetes shifted during age-specific transitions such as high school sports seasons, early romantic relationships, and attending college. ⁴³

Beyond the informational support that participants derived from their interactions on social media, participants emphasized the importance of emotional solidarity in their online community. As adolescents shared their feelings and experiences, they participated in what has been termed “reciprocal empathic practices” in studies of people with chronic illnesses. ⁴⁴ For many participants, offline social circles did not provide the social proximity to other individuals with T1D or the sense of emotional safety necessary for cultivating reciprocal empathy. On social media specifically, adolescents with T1D followed a common behavioral pattern of primarily featuring positive aspects of their lives on specific platforms. ⁴⁵ However, adolescents described how options for anonymity and selective sharing on some social media platforms enhanced their comfort level with disclosing their medical condition. Given that a key factor in adolescent friendships is validation and caring in response to self-disclosure, social media can facilitate increased interpersonal support in adolescents with T1D, particularly for individuals who lack strong offline support or who seek additional control over self-disclosure. ⁴⁶

This study has limitations. First, the diversity of perspectives included in this qualitative study is limited by the use of a sample recruited from the Seattle Children’s Hospital patient population. While our sample captures the socioeconomic and racial diversity of the patients served in the Seattle, WA metro area, it may not be generalizable to adolescents in other regions. Additionally, participants who responded to recruitment materials may be skewed toward individuals who hold strong opinions, both positive and negative, regarding social media. Finally, due to fact that all interviews were conducted in English, our results exclude the perspectives of non-English-speaking adolescents.

Conclusion

This qualitative study contributes to emerging research exploring social media use in adolescents with diabetes. Our findings highlight that social media offers adolescents with T1D unique opportunities for identity development, along with the autonomy to receive emotional support, age-appropriate medical information, and identity validation from peers. Additionally, our work provides insight into the interconnected nature of social media experiences with larger societal contexts by describing how social stigma informs decisions to engage about diabetes on social media.

Our findings highlight the value of developing tools to support adolescents with T1D to comfortably discuss and receive support and advice from peers about T1D on social media. Given that many adolescents already utilize social media for these purposes, subsequent work should explore possibilities for facilitating access to supportive and knowledgeable social media communities. Additionally, both future research and clinical care of adolescents with T1D must account for the integral nature of social media experiences in adolescents’ lives and work to maximize social media’s impact on well-being and mitigate the effects of social stigma and isolation.