Table 1.

Themes identified from family/parent participant responses to the end of the Network cycle survey regarding the Family Network Collaborative (FNC).

I. What motivates you to participate in this group?

• Gratitude and an opportunity to give back

• Improve outcomes for future critically ill and/or injured children and their families

• Facilitate and promote family-centered research

II. What would you like to see accomplished by the FNC to support the Network researchers?

• Advancement of the goals of the Network

• Incorporation of family perspectives into research design, protocols, wording/content of family facing documents, and research topics

• Improvement in retention of patients in studies

• Promotion of pediatric intensive care unit (PICU) research through advocacy

III. List the benefits you perceive to the Network researchers from your participation as a FNC member since you’ve joined.

• Assurance that family perspectives are considered valued aspects of PICU research

• Improved communication between family members and investigators of research needs

• Provision of a community resource for families and for the research Network

IV. Describe the current challenges you see in collaborating with our Network researchers most effectively.

• Adequate meeting time with investigators to assure robust communication

• Timely and effective communication outside of meetings

• Consensus commitment to the FNC from all Network investigators

• Assurance that all family participants find value in their contribution to the Network

• Utilization of family participant special skills to benefit the Network (e.g. advocacy, public speaking, grant writing)