Understanding the lived experience of adolescents with type 1 diabetes

Webster, Mary; Foster, Emma; Comber, Rob; Bowen, Simon; Cheetham, Tim; Balaam, Madeline

doi:10.1145/2771839.2771854

Cited by 13 publications

(4 citation statements)

References 39 publications

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“…Additionally, research has also found that higher perceptions of social support are correlated with increased feelings of control over one's health condition (Evans and Connis, 1995;Wright, 2002). It is particularly important during the adolescent and teen years during which individuals develop their sense of self (Olsson et al, 2005;Webster et al, 2015). Social support is an overarching term that encompasses five types of support, including: informational, emotional, esteem, networking, and tangible (Cutrona and Suhr, 1992).…”

Section: Social Supportmentioning

confidence: 99%

#T1DLooksLikeMe: Exploring Self-Disclosure, Social Support, and Type 1 Diabetes on Instagram

Holtz

Kanthawala

2020

Front. Commun.

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Type 1 diabetes (T1D) is diagnosed mostly during childhood or adolescent years. During such transitional phases of life, having support from others in similar situations can reduce feelings of isolation and loneliness. Instagram, a platform with high use among teens or young adults, acts as an alternative to traditional online health communities. To better understand individuals self-disclosure on Instagram related to T1D, we conducted an exploratory quantitative content analysis of a sample of 423 posts using the hashtag #t1dlookslikeme. These posts were collected using Netlytic between July-October 2018. Our research questions asked about the types of hashtags used, the content of the images, the sentiments of the posts, the relationship between post engagement and post sentiment, if and how the posts represented self-disclosure, and the presence of social support. A codebook containing 43 items on the image and 10 codes for captions was created for this study, and all data were analyzed using SPSS. Our dataset included 89% images compared to 6.4% video clips. Additionally, 83.5% of the posts were personal images whereas 11.6% were categorized as memes. We noted the most popular hashtags, and other characteristics of the images used by individuals to self-disclose their T1D. Overall, our random sample contained more positive sentiment posts rather than negative-and these positive sentiment posts were correlated with a higher number of hashtags in each post. Indicating a possible connection between self-disclosure and positive sentiment. This finding also reflected elements of empowerment (such as taking the "power" away from T1D and returning it to themselves), which is also discussed.

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Section: Social Supportmentioning

confidence: 99%

#T1DLooksLikeMe: Exploring Self-Disclosure, Social Support, and Type 1 Diabetes on Instagram

Holtz

Kanthawala

2020

Front. Commun.

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“…In fact, T1D-specific stigma and stigma by association with T2D leads to reluctance to disclose (Browne et al, 2014), with young adults describing helpful, neutral and negative reactions to disclosure (Dovey-Pearce et al, 2007). This is relevant to social support, as findings emphasize the value of sharing personal stories with others with T1D (Webster et al, 2015).…”

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confidence: 97%

Making the leap and finding your feet: A qualitative study of disclosure and social support in university students with type 1 diabetes

2018

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University poses unique challenges surrounding disclosure for students living with type 1 diabetes, with implications for social support and self-management. Semi-structured interviews with students and peer interviewers living with type 1 diabetes explored university experiences of disclosure and social support. Thematic analysis identified three major themes: disclosure as a measured process, the need for lived experience for true understanding and personal growth and self-awareness. Findings emphasize the need to scaffold the university transition for individuals with type 1 diabetes as disclosure can elicit effective social support. In addition, the importance of lived experience suggests support from students with type 1 diabetes could considerably impact diabetes management.

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“…Although PatientsLikeMe and Facebook users can communicate synchronously or asynchronously via private messaging and timeline posts, finding relevant and accurate information across many resources and at different points of the care process poses many challenges. Prior work has also explored the use of virtual spaces where patients can access a repository of advice organized by symptom, treatment, or common struggle [6,49]. However, the cognitive and physical effort required to navigate and find relevant support is something that patients and caregivers in the hospital are not always not capable of due to medications or treatments [39].…”

Section: Discussionmentioning

confidence: 99%

Opportunities and Design Considerations for Peer Support in a Hospital Setting

Haldar

Mishra

Khelifi

et al. 2017

Proceedings of the 2017 CHI Conference on Human Factors in Computing Systems

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Although research has demonstrated improved outcomes for outpatients who receive peer support—such as through online health communities, support groups, and mentoring systems—hospitalized patients have few mechanisms to receive such valuable support. To explore the opportunities for a hospital-based peer support system, we administered a survey to 146 pediatric patients and caregivers, and conducted semi-structured interviews with twelve patients and three caregivers in a children’s hospital. Our analysis revealed that hospitalized individuals need peer support for five key purposes: (1) to ask about medical details—such as procedures, treatments, and medications; (2) to learn about healthcare providers; (3) to report and prevent medical errors; (4) to exchange emotional support; and (5) to manage their time in the hospital. In this paper, we examine these themes and describe potential barriers to using a hospital-based peer support system. We then discuss the unique opportunities and challenges that the hospital environment presents when designing for peer support in this setting.

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Understanding the lived experience of adolescents with type 1 diabetes

Cited by 13 publications

References 39 publications

#T1DLooksLikeMe: Exploring Self-Disclosure, Social Support, and Type 1 Diabetes on Instagram

#T1DLooksLikeMe: Exploring Self-Disclosure, Social Support, and Type 1 Diabetes on Instagram

Making the leap and finding your feet: A qualitative study of disclosure and social support in university students with type 1 diabetes

Opportunities and Design Considerations for Peer Support in a Hospital Setting

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