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

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 (Recruiting): 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.

Inclusion Criteria:

- Parent or legal guardian of a child with T1D < 6 years old at enrollment

- Child and parent/guardian live in the United States

- Parent is able to read and comprehend written English

- Access to the internet

Exclusion Criteria:

- Inability to read or comprehend study questionnaires or website content

INTERESTED, ELIGIBLE PARENTS OR GUARDIANS CAN LEARN MORE BY NAVIGATING TO:
www.bit.ly/youngT1D