A Crowdsourced Social Media Portal for Parents of Very Young Children with Type 1 Diabetes

Project Summary: The incidence of Type 1 Diabetes (T1D) is increasing faster in Children < age 6 than other groups. T1D care for Very Young Children (YC-T1D) is very challenging due to their special behavioral, emotional, cognitive and physiological features. Also, it is difficult to minimize both hypo- and hyperglycemic exposure, yet both may affect cognitive sequelae. Parents of YC-T1D struggle to implement optimal T1D care, creating distress that takes a psychological toll on them. Parenting stress, anxiety, depression, and sleep deficiency have been associated with poorer T1D outcomes in this population. Since a trajectory of maladaptive coping with T1D may persist, it is critical to validate interventions that assist YC T1D Parents in managing common T1D-related behavioral problems, resolving daily T1D hassles, cultivating healthy coping with T1D distress, and recruiting effective social supports. No rigorous trials of pertinent interventions have been done. Adequate social support enhances both psychological and physical health, but there are barriers to helping YC-T1D parents develop social support networks that offer timely, pertinent and helpful social supports. 

One possible mechanism for achieving this is through a carefully designed and constructed social media portal developed by and for YC-T1D parents with input from health care providers and application developers. We plan to accomplish this by drawing on "crowdsourcing" expertise provided by our partner, Appirio, Inc. Crowdsourcing is a flexible online activity that has been applied to diverse problems in many fields, including Public Health, that includes four elements: 1.) An organization that has a task it needs to be performed, (e.g., Development of A Social Media resource by and for Parents of YC-T1D); 2.) A community, "the crowd", that agrees to perform the necessary tasks voluntarily (here Parents of YC-T1D, T1D clinicians, and application developers); 3.) An online environment that facilitates this work by enabling collaboration between the crowd and the organization, (the infrastructure proposed here); and 4.) mutual benefit for the organization and crowd members (better T1D outcomes for children and better quality of life for children and parents). We propose parent-driven design of a social media portal that will provide YC-T1D parents with timely, responsible, safe and effective support regarding parental management of common behavioral and affective barriers to effective T1D care in YC-T1D. We will then conduct a preliminary trial (completely in cyberspace) to yield data supporting a future multisite controlled trial of the effectiveness of this Social Media resource.