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Social Media in the Diabetes Community: a Novel Way to Assess Psychosocial Needs in People with Diabetes and Their Caregivers

Abstract

Purpose of Review

Diabetes is a chronic disease that, regardless of type, requires intensive, ongoing self-management. As a result, people with diabetes (PWD) often have complex environmental, social, behavioral, and informational needs, many of which are unmet in healthcare settings and systems. To help meet these needs, many PWD interact with diabetes online communities (DOCs), including platforms such as Facebook, Twitter, and blogs, to share real-life support, problems, and concerns with other PWD, offering a rich source of data on patient-reported outcomes. This article reviews recent psychosocial needs and outcomes identified by studies of DOCs and/or their users.

Recent Findings

Participation in DOCs appears driven by a need for psychosocial support, unmet by providers and the healthcare system, as well as a sense of duty to provide it to others. The most common activities observed in DOCs are giving and receiving various types of support: psychosocial, technical, informational, and self-management. General and specific challenges (e.g., continuous glucose monitoring) as well as frustrations and worries associated with those challenges are commonly expressed, leading to reciprocal sharing, support, and encouragement, in a judgment-free manner, from other PWD. This leads users to feel more understood, empowered, validated, less alone, and more supported. Negative findings were reported very rarely and focused more on how other participants used social media rather than on the exchange of misplaced or dangerous information or advice.

Summary

Diabetes online communities have grown from unmet needs for problem-solving and psychosocial support for living with a complex condition and from the availability of a new communications medium (i.e., social media). This has enabled communities of peers to both seek and receive support for living with diabetes, providing an important supplement to what is provided in healthcare settings and offering valuable information about what is most important to PWD and their families, with the potential to improve psychosocial care.

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Acknowledgments

The authors wish to acknowledge all people touched by diabetes, including those who are part of a diabetes online community and those who are not. Thank you for allowing us to learn from you.

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All authors contributed to the writing and reviewing of the manuscript.

Corresponding author

Correspondence to Tamara K. Oser.

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Conflict of Interest

Tamara K. Oser reports grants from The National Institute of Diabetes and Digestive and Kidney Diseases, grants and non-financial support from The Leona M. and Harry B. Helmsley Charitable Trust, grants from the Beryl Institute, non-financial support from Children With Diabetes, non-financial support from JDRF, non-financial support from the American Association of Diabetes Educators, personal fees and non-financial support from Xeris Pharmaceuticals, personal fees from MannKind Corporation, and personal fees from Highmark, outside the submitted work.

Sean M. Oser reports grants from The National Institute of Diabetes and Digestive and Kidney Diseases, grants and non-financial support from The Leona M. and Harry B. Helmsley Charitable Trust, grants from The Beryl Institute, non-financial support from Children With Diabetes, non-financial support from JDRF, personal fees and non-financial support from Med-IQ, personal fees and non-financial support from Bayer Pharmaceuticals, personal fees and non-financial support from Xeris Pharmaceuticals, and personal fees from Highmark, outside the submitted work.

Jessica A. Parascando has nothing to disclose.

Danielle Hessler-Jones reports grants from The National Institute of Diabetes and Digestive and Kidney Diseases, outside the submitted work.

Christopher N. Sciamanna reports grants from The National Institute of Diabetes and Digestive and Kidney Diseases, grants from The Patient-Centered Outcomes Research Institute, and other from BandUp, Inc., outside the submitted work.

Kerri Sparling reports personal fees and non-financial support from Tandem Diabetes and non-financial support from Children With Diabetes, outside the submitted work.

Donald Nease Jr. reports grants from The Agency for Healthcare Research and Quality, grants from The National Center for Advancing Translational Sciences, grants from The National Cancer Institute, grants from The Patient-Centered Outcomes Research Institute, grants from The Colorado Health Foundation, non-financial support from The Foundation for Psychosomatic and Social Medicine, non-financial support from The Colon Cancer Alliance, and non-financial support from The International Balint Federation, outside the submitted work.

Michelle L. Litchman reports grants from Abbott Diabetes and non-financial support from The American Association of Diabetes Educators, outside the submitted work.

Human and Animal Rights and Informed Consent

All procedures performed in the selected evidence studies referenced involving human participants were in accordance with the ethical standards of the institutional and/or national research committees at their institutions and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards. Informed consent was obtained by all study participants and study protocol was conducted according to local and national scientific regulations.

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Oser, T.K., Oser, S.M., Parascando, J.A. et al. Social Media in the Diabetes Community: a Novel Way to Assess Psychosocial Needs in People with Diabetes and Their Caregivers. Curr Diab Rep 20, 10 (2020). https://doi.org/10.1007/s11892-020-1294-3

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Keywords

  • Type 1 diabetes
  • Type 2 diabetes
  • Social media
  • Caregivers
  • Psychosocial outcomes
  • Peer support