Peer Support Through a Diabetes Social Media Community

Gavrila, Valerie; Garrity, Ashley; Hirschfeld, Emily; Edwards, Breann; Lee, Joyce M.

doi:10.1177/1932296818818828

Cited by 65 publications

(60 citation statements)

References 13 publications

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“…The code granted him real-time access for monitoring his son's CGM data via the web or a smartphone app. Later, he made the Nightscout website and a private Facebook group called ''CGM in the Cloud'' to make the code openly available to a large community [16,22]. Pete Schwamb, a software engineer, invented RileyLink, a translator device to interconnect the insulin pump and an iPhone, in an effort to obtain access to the insulin pump data of his 6-year-old daughter Riley.…”

Section: D-dads: Chasing the Impossiblementioning

confidence: 99%

“…An online survey reported that the patients and caregiver members of the ''CGM in the Cloud'' Facebook group have received and provided technical, emotional, and medical support through the online platform [22]. Patient stories and feedback are available at sites specific for different configurations of DIYAPS: https:// openaps.org, https://androidaps.readthedocs.…”

Section: Online Peer Support From the Loopers Communitymentioning

confidence: 99%

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The Do-It-Yourself Artificial Pancreas: A Comprehensive Review

Kesavadev

Srinivasan

Saboo³

et al. 2020

Diabetes Ther

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Diabetes technology (DT) has accomplished tremendous progress in the past decades, aiming to convert these technologies as viable treatment options for the benefit of patients with diabetes (PWD). Despite the advances, PWD face multiple challenges with the efficient management of type 1 diabetes. Most of the promising and innovative technological developments are not accessible to a larger proportion of PWD. The slow pace of development and commercialization, overpricing, and lack of peer support are few such factors leading to inequitable access to the innovations in DT. Highly motivated and tech-savvy members of the diabetes community have therefore come up with the #WeAreNotWaiting movement and started developing their own do-it-yourself artificial pancreas systems (DIYAPS) integrating continuous glucose monitoring (CGM), insulin pumps, and smartphone technology to run openly shared algorithms to achieve appreciable glycemic control and quality of life (QoL). These systems use tailor-made interventions to achieve automated insulin delivery (AID) and are not commercialized or regulated. Online social network megatrends such as GitHub, CGM in the Cloud, and Twitter have been providing platforms to share these open source technologies and user experiences. Observational studies, anecdotal evidence, and realworld patient stories revealed significant improvements in time in range (TIR), time in hypoglycemia (TIHypo), HbA1c levels, and QoL after the initiation of DIYAPS. But this unregulated do-it-yourself (DIY) approach is perceived with great circumspection by healthcare professionals (HCP), regulatory bodies, and device manufacturers, making users the ultimate riskbearers. The use of the regularized CGM and insulin pump with unauthorized algorithms makes them off-label and has been a matter of great concern. Besides these, lack of safety data, funding or insurance coverage, ethical, and legal issues are roadblocks to the unanimous acceptance of these systems among patients with type 1 diabetes (T1D). A multi-agency approach is necessary to evaluate the risks, and to delineate the incumbency and liability of Digital Features To view digital features for this article go to

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Section: D-dads: Chasing the Impossiblementioning

confidence: 99%

Section: Online Peer Support From the Loopers Communitymentioning

confidence: 99%

The Do-It-Yourself Artificial Pancreas: A Comprehensive Review

Kesavadev

Srinivasan

Saboo³

et al. 2020

Diabetes Ther

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“…As smartphone and social media use are permeating individuals' lives, online peer support groups have become useful resources for exchanging ideas among people who undergo similar situations. In many chronic conditions, caregivers take advantage of exchanging useful health information and share experiences with other peers (37,38). Such opportunities to interact with individuals in similar circumstances enables caregivers to gain from indirect experiences and obtain useful resources, resulting in improved stress-coping strategies and resilience (36).…”

Section: Social Support: Ventilating Feelings and Acquiring Coping Stmentioning

confidence: 99%

Online interventions geared toward increasing resilience and reducing distress in family caregivers

Shin

Choi

2020

Current Opinion in Supportive &Amp; Palliative Care

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Purpose of review-Family caregivers of patients with cancer often spend a great deal of effort on physically and emotionally demanding work while taking care of patients. However, the majority of caregivers are not properly equipped for their role as caregivers, which may lead to increased distress in both caregivers and patients. Herein, we reviewed the recent literature (last three years) examining online interventions that seek to support caregiver resilience and decrease distress. Recent findings-Our search identified interventions involving three main themes: informational support, positive activities, and social support. These are mostly in the form of webbased tools and mobile apps targeting both usability and quality of life (QOL). Social network services (SNS) is also considered in this review as a new environment for caregivers to connect with other individuals with lived experience in similar circumstances. Summary-Existing studies on online interventions to support caregivers is still at a formative development stage and pilot tests of feasibility, rather than a substantive body of randomized controlled trials to assess the impact in different user populations, or to determine specific factors that impact caregiver distress level or resilience. More research is needed to further assess the long-term effects of online interventions on caregiver stress and resilience. Also, the role of different types of social network services and new forms of interaction, such as conversational agents, has not yet been fully investigated in caregiver populations. Future research should strive to seek new modes of providing services that may present novel opportunities to enhance caregiver resilience and reduce distress.

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“…In addition to that, support can extend to an extra experiences online forum, physically connecting its participants. (32) This space of exchange, especially for the young, can constitute an opportunity to re-signify the chronic disease, as well as to recognize among the shared difficulties some self-care strategies that can be adopted to improve their quality of life.…”

Section: M20 19 Yearsmentioning

confidence: 99%

Perspectiva de jovens com diabetes sobre intervenção educativa na rede social Facebook®

et al. 2019

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Resumo Objetivo Apreender a perspectiva de jovens com diabetes mellitus sobre a participação em um grupo de estimulo ao autocuidado na rede social Facebook®. Métodos Estudo descritivo e exploratório, junto a 35 jovens com diabetes mellitus tipo 1 que participaram de um grupo no Facebook®. Os dados foram coletados por meio de entrevista semi-esturuada e após submetidos à análise de conteúdo, modalidade temática. Resultados Foram identificadas três categorias: assistência convencional oferecida aos jovens com diabetes mellitus; vantagens da utilização do Facebook® para inovação da assistência à saúde, e espírito de comunidade e fortalecimento a partir do Facebook®, as quais mostram que, na perspectiva de jovens com diabetes, a participação no grupo favoreceu o desenvolvimento do espírito de comunidade e o fortalecimento de vínculo entre os pares, além de auxiliar no processo de aceitação da doença e na formação de uma rede de suporte. Além disso, observou-se avaliação positiva sobre a participação, uma vez que os jovens manifestaram o desejo de que outros grupos com características semelhantes fossem implementados. Conclusão Ações educativas na rede social Facebook® são bem aceitas por jovens e pode constituir uma estratégia importante para aproximá-los dos serviços de saúde e auxiliá-los nas ações de autocuidado.

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Peer Support Through a Diabetes Social Media Community

Cited by 65 publications

References 13 publications

The Do-It-Yourself Artificial Pancreas: A Comprehensive Review

The Do-It-Yourself Artificial Pancreas: A Comprehensive Review

Online interventions geared toward increasing resilience and reducing distress in family caregivers

Perspectiva de jovens com diabetes sobre intervenção educativa na rede social Facebook®

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