The diabetes online community: the importance of forum use in parents of children with type 1 diabetes

Pediatr Diabetes. 2014 Sep;15(6):408-15. doi: 10.1111/pedi.12110. Epub 2013 Dec 25.


Online forums for chronic health conditions emerged as early as 30 yr ago and interest in their study has blossomed. Type 1 diabetes (T1D) forums have grown exponentially since 2005. Therefore, a comprehensive evaluation of these forums is needed. This study assesses the demographics and motivations of parents who use type 1 diabetes forums and the potential impact that forum membership (FM) has on parenting stress and hypoglycemic fear. One hundred and two parents were recruited through online T1D forums and asked to complete qualitative and quantitative measures of their experience with the T1D forums. Results of this study suggest that parents who use T1D forums mirror those who participate in clinic-based research protocols and are primarily motivated to participate in forums to increase their diabetes knowledge and gain social support. Indeed, parents who use T1D forums report high levels of trust, social support, and perceived knowledge gained. However, FM was positively related to increased self-reported parenting stress frequency and hypoglycemic fear behaviors. Taken together, the relationships formed within these communities may have a significant impact on the experience of these caregivers. The need for future research and potential implications for physicians, including parent debriefing, are discussed.

Keywords: Internet; diabetes care; social networks; social support.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adolescent
  • Adult
  • Child
  • Child, Preschool
  • Community Networks / organization & administration
  • Community Networks / statistics & numerical data
  • Diabetes Mellitus, Type 1 / epidemiology*
  • Diabetes Mellitus, Type 1 / psychology*
  • Diabetes Mellitus, Type 1 / therapy
  • Education, Nonprofessional / organization & administration
  • Education, Nonprofessional / statistics & numerical data*
  • Fear / physiology
  • Female
  • Humans
  • Hypoglycemia / epidemiology
  • Hypoglycemia / psychology
  • Internet
  • Male
  • Middle Aged
  • Online Systems*
  • Parent-Child Relations*
  • Parents* / education
  • Parents* / psychology
  • Self-Help Groups / organization & administration
  • Self-Help Groups / statistics & numerical data*
  • Stress, Psychological / complications
  • Stress, Psychological / epidemiology
  • Young Adult