Tamara K Oser1, Sean M Oser2, Jessica A Parascando3, Danielle Hessler-Jones4, Christopher N Sciamanna5, Kerri Sparling6, Donald Nease2, Michelle L Litchman7. 1. Department of Family Medicine, University of Colorado School of Medicine, Anschutz Medical Campus, 12631 E. 17th Avenue, Mail Stop F496, Aurora, CO, 80045, USA. tamara.oser@cuanschutz.edu. 2. Department of Family Medicine, University of Colorado School of Medicine, Anschutz Medical Campus, 12631 E. 17th Avenue, Mail Stop F496, Aurora, CO, 80045, USA. 3. Department of Family and Community Medicine, Penn State College of Medicine, Hershey, PA, USA. 4. Department of Family and Community Medicine, University of California San Francisco, San Francisco, CA, USA. 5. Departments of Medicine and Public Health Sciences, Penn State College of Medicine, Hershey, PA, USA. 6. SixUntilMe.com and KerriSparling.com, Narragansett, RI, USA. 7. College of Nursing, University of Utah, Salt Lake City, UT, USA.
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. 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.
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. 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.
Entities:
Keywords:
Caregivers; Peer support; Psychosocial outcomes; Social media; Type 1 diabetes; Type 2 diabetes
Authors: Lawrence Fisher; Danielle Hessler; William H Polonsky; Umesh Masharani; Susan Guzman; Vicky Bowyer; Lisa Strycker; Andrew Ahmann; Marina Basina; Ian Blumer; Charles Chloe; Sarah Kim; Anne L Peters; Martha Shumway; Karen Weihs; Patricia Wu Journal: Diabetes Care Date: 2018-07-05 Impact factor: 19.112
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