State by State Family Engagement Activities
ALABAMA STATE TEAM
The team is now planning a presentation at the annual Early Intervention and Preschool Conference in October, which will be moderated by a family member and also include a perspective of a family member who attends the CMC Clinic at USA in Mobile.
COLORADO STATE TEAM
Currently working with family leaders to prepare for the July family focus group, recruit families, design site visit agenda. Ellen, Angie, and Shawnna met on 6/4 to discuss the Family Focus group. A draft invitation email was created and brainstorming on how to best recruit. Ellen reached out to families for patients we wish to enroll in our cohort to invite them to participate in the Family Focus group. 15 family members have responded that they were interested! Ellen sent a follow-up email to those interested on 6/18 with additional information and financial forms from BU.
INDIANA STATE TEAM
Having a portion set aside just for our family representatives to present on their individual organizations once again to the full group was very helpful. They were able to link their personal stories and to the importance of this work. Everyone in the room, especially the doctors in the three pilot sites, really appreciated this.
KENTUCKY STATE TEAM
We have a family representative who is engaged in family activities.
MASSACHUSETTS STATE TEAM
Sarah did a wonderful job leading the focus group for our site visit. We also had our regular meeting with our family representatives. We discussed with them our process for recruitment to determine if there was anything in our approach that could be improved on.
MINNESOTA STATE TEAM
Parent
advisors are integral members of the clinic QI team. New parent advisor added to team, to represent Greater Minnesota. Attend monthly QI meetings; input and viewpoint is very much appreciated by non-parent members of the team. Care Coordination Seminar was attended by approximately 12 parents; informal feedback during seminar was very positive.
OREGON STATE TEAM
During June, Ana, BranDee, and Tami participated in our weekly project meetings and provided invaluable input in the development of the Transition Binder, which will be handed to families enrolled in the intervention at the introduction meeting. Tami updated the draft of the Transition Binder developed by Reem and Reyna (our clinical partners) with family friendly ideas. Ana and BranDee then gave written inputs on every page of this draft, which were then discussed among all team members. The final version of the Binder will include their inputs. They also are preparing a letter to be included in the Binder that will encourage family participation in our survey data collection. Family representatives revisited conversations about managing possible crises in upcoming focus groups, and sought clarification on how our state will plan for it. Conversation will continue as we get closer to focus groups.
TEXAS STATE TEAM
- Family night
- Sibling camps
- Consultations with parent workgroup about project as well as staffing a family liaison role
WASHINGTON STATE TEAM
- Did a test run of the family group virtual platform to work out bugs and determined who of the enrolled families were interested in participation
- Family Navigators are working on the first group of families for the survey and the method of inquiry most comfortable for each family
- Family based input and reflections continue to be a strong driver of the work done in this project
WISCONSIN STATE TEAM
Several members of our group (Jane Lee, Holly Owens, and Barbara Katz) participated in the work group about the family quality of life and well-being focus groups; Barbara and Holly will facilitate the focus group on August 12th. We have begun to recruit family participants and are hoping to have a diverse group ready to share their thoughts.
