A Crowdsourced Social Media Portal for Parents of Very Young Children With Type 1 Diabetes
Condition: Type 1 Diabetes Mellitus
MeSH terms: Diabetes Mellitus; Diabetes Mellitus, Type 1
Study type: Interventional

Summary: 
      The first 2 years of this project consisted of user-centered design and development of an
      online resource designed by and for parents of very young children with type 1 diabetes
      (under 6 years old). That phase of the work has been completed and recruitment has begun for
      the second phase, which is a randomized controlled trial to evaluate the effects of use of
      this resource on a variety of pertinent child and parent outcomes. INTERESTED, ELIGIBLE
      PARENTS OR GUARDIANS CAN LEARN MORE BY NAVIGATING TO: www.bit.ly/youngT1D
    

Detailed description: 
      In response to PA-DK-14-022, the researchers propose to design and test an intervention to
      improve management of type 1 diabetes (T1D) in very young children (<6 years). Parents of
      very young children with T1D (YC-T1D) often experience distress and anxiety that can impede
      T1D care, threatening the child's current and future adaptation to T1D.Typical health care
      often does not equip parents to contend with these issues, but YC-T1D parents can offer
      support/guidance to each other to promote parental coping and thus child outcomes. The many
      obstacles to direct interaction among parents suggest that social media may be an efficacious
      way to facilitate timely, meaningful and needed social support such as parenting guidance,
      affective support, provision of information, and sharing of creative solutions to common T1D
      management problems in YC-T1D. Many good social media resources exist, but there is not a
      focused portal that facilitates parents' access to these resources, nor have potential
      benefits been validated empirically. The researchers applied crowdsourcing methods to achieve
      the iterative development and initial evaluation of an online resource designed by and for
      YC-T1D parents with continuous input from health professionals and technical expertise in
      crowdsourcing and application development provided by our web development agency partners
      (e-city interactive, Philadelphia) and Nemours web development team.

      Crowdsourcing is a flexible online activity that has been applied to diverse problems in many
      fields, including public health, with four elements: 1.) An organization that has a task it
      needs to be performed, (development of an online resource that meets the needs of 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 professional application developers); 3.) An
      online environment that allows the work to take place by enabling collaboration between the
      crowd and the organization, (the infrastructure proposed in this grant); and 4.) Mutual
      benefit for the organization and members of the crowd (better glycemic control, improved
      quality of life and decreased burden of care for YC-T1D and their families).

      To the researchers' knowledge, crowdsourcing has not been applied to the design and
      development of online health behavior resources such as that proposed in this application.
      They will design the portal with stakeholders based on principles of User-Centered Design and
      then collect preliminary data needed to justify and then conduct a rigorous controlled trial
      of the effectiveness of an online resource that will provide parents of YC-T1D (<6 years old)
      with timely, responsible, safe and effective support and guidance regarding parental
      management of common behavioral, affective and cognitive barriers to effective T1D care in
      this age group. The proposed work will address these specific aims:

      Aim 1 (Completed): The team used crowdsourcing methods to 1.) Identify the most important
      concerns about management of YC-T1D from key stakeholders (parents, pediatric
      endocrinologists, diabetes nurses, dietitians, psychologists and social workers) to specify
      content areas that the online resource should address; 2.) Collaborate with parents (with
      available input from T1D professionals) to design the optimal content, structure, functions
      and governance of a social media resource for parents of YC-T1D to improve daily T1D care and
      problem solving, to enhance parental coping with sources of distress and care burden that
      uniquely affect this clinical population and to facilitate parents' access to and use of
      other beneficial resources of the diabetes online community.

      Aim 2 (Completed): The researchers iteratively incorporated the knowledge, experience and
      perspectives gained in Aim 1 to systematically build and refine an online resource enabling
      parents of very young children with T1D to obtain real-time emotional support, information
      and parenting guidance, enabling them to cope more effectively with the daily demands of
      diabetes management in this population. The team relied on the web development agency
      partners, Nemours web development team, and ongoing stakeholder input.

      Aim 3 (Completed): The researchers will conduct a randomized controlled trial of a final
      version of the online resource with parents of at least 150 children <6 years old who receive
      T1D care at any Nemours operating entity in the Delaware Valley and Florida or who enroll in
      response to online announcements. The team will explore treatment effects on metabolic,
      behavioral and affective outcomes of T1D care, patterns of portal utilization by parents and
      users' feedback on website use during and after the trial.

      Having designed, built, tested, validated and refined the proposed online resource, the team
      will be well-positioned to plan and complete a rigorous randomized controlled trial to
      evaluate effects of portal use/access on metabolic, behavioral, affective and social outcomes
      of T1D care for YC-T1D. While completing Aim 3, the researchers will solidify partnerships
      with several key organizations (PEDSnet, T1D Exchange, JDRF, American Diabetes Association)
      to enable economical completion of a major multisite trial. The design of the proposed
      preliminary RCT will position the team to propose a completely electronic multisite RCT that
      does not require face to face contact between parents and the research team and can be
      completed totally in cyberspace.
    

Intervention name(s): Website
Intervention type(s): Behavioral
Intervention description(s): Participants in the Website condition will be provided with password-protected access to the online resource created for this trial that provides a variety of information, support and guidance that could permit them to adapt more effectively to the demands of parenting a very young child with type 1 diabetes.
Allocation: Randomized
Intervention model: Factorial Assignment
Intervention model description: The study design consists of randomization of parents of 150 children with T1D to either Website (n=100) or Usual Care (n=50) for 6 months followed by all participants reverting to the Website condition for the subsequent 6 months.
Masking: Single (Outcomes Assessor)
Primary purpose: Health Services Research