1. Erin McQuivey, Cindy Smith, Nicole Erickson Macy, and Lisa Wilson | Faculty advisor: Barbara Fiechtl | URELEND URELEND Family Directed Consultation

2. “Nothing determines the course of individuals’ lives more than their families.” –Sarah Landy, 2006.  Main components of Parent Directed Consultation, PDC – Family-centered care (FCC)  New with paucity of research  Available research supports positive outcomes  Linked to Trans/interdisciplinary team approach Introduction

3.  Family-centered care or FCC – Improved outcomes for children with special healthcare needs (Kuhlthau et al., 2001, Law, et al., 2003, Kuo, Bird, & Tilford, 2011)  Greater family satisfaction reports  Fiscally responsible  Supports positive family outcomes  Increases staff satisfaction  Fewer delays in care  Fewer emergency room visits  Reduce some racial disparities in care (Ngui & Flores, 2006) – Less likely to receive a FCC approach when receiving care (Coker, Rodriquez, & Flores, 2010). Overview of Literature

4.  Ambrose et al. (2013) initiated a project entitled, “Evaluation of Parent-Directed Consultations in the Utah Regional Leadership Education in Neurodevelopmental Disabilities Program” – Learn more about families that participate in the URLEND PDC’s by assessing family coping and family perceptions of their participation in the PDC.  The aims of this project are essentially the same. – Continuation of initial study  Assessing family coping and family perceptions of their participation in the PDC.  Increase both the sample size and the validity Project Purpose

5.  Participants – Convenient Sample – Recruited by URLEND trainees or by URLEND faculty members – 14 parents or caregivers of children with special healthcare  Three online surveys – PDC Prep, End, and Follow-Up  Three days, immediately after PDC, and one month respectively – Developed by PDC Leadership group 2012-2013 were  Administered using the survey hosting website Survey Monkey.  Utilized a variety of questions, including open-ended, Likert scale, and multiple choice questions (Dillman, 2000). Method: Participants and Survey

6.  Prep survey – Questions about family demographics; questions regarding types of current and past services, family-centered care, family coping skills; and open-ended questions around reasons for PDC participation  End Survey – Examining the family’s experience participating in the PDC – Questions included opinions around feelings of being heard, treated as equal team members, concerns validated and addressed, respect of family phenomenology, and open-ended question prompting for suggestions of PDC improvement  Follow-Up Survey – Second measure of family stress, opinion of family-centered care, and the family’s experience participating in the PDC Procedures: Measures

7. FamilyPre-PDC FCC Score1 month post-PDC FCC scoreChange 13231 228346 3263610 426282 52624-2 627 0 731354 8263610 92322 1036404 112826-2 1229345 1338 0 Mean26.9231.612.53 Results (cont.) Family-Centered Care (FCC) Composite Scores

8. FamilyPre-PDC FCS score1 month after PDC Score Change 12725-2 22826-2 323252 4 0 52423 61514 723274 8 24-3 918268 1017225 111513-2 1225272 132120 Mean22.1522.849 Results (cont.) Table 9 Family Coping Skills (FCS) Composite Scores

9.  Big Picture – Increase in score from pre to post – Data continued to support hypothesis  Limitations – Limited sample size – Participant bias  Convenience Sample – Participant Attrition  Future Recommendations – Pamphlet – Short video clip Discussion

10. Questions and Comments THANK YOU!

11. PDC Role Release Local ASSERT ConnectDiscuss Seminars ABA/PlayFC PDC Project Parent Directed Consultations (PDC) Autism Support Services Education Research Training (ASSERT) Applied Behavioral Analysis (ABA) Facilitated Communication (FC) Transdisciplinary Teaming (TT) Nicole’s Highlights and Suggestions AE only Book ClubFacilitate Life game TT and Role Release SeminarLecture Connect Fall meeting

12. Assert Variety of Experiences Clinical Parents & Families CAA Leadership Group Autism Support Services Education Research Training (ASSERT) Erin’s Highlights and Suggestions Training More diverse opportunities More interactions AE Trainees Project choice

13. URLEND ChangingImproving ASSERTHome Visits PDC Project Parent Directed Consultations (PDC) Autism Support Services Education Research Training (ASSERT) Cindy’s Highlights and Suggestions ASSERT Attend Parent Meeting TT and Role Release SeminarLecture PDC video Fall

14. Autism Focus Research Exposure Not having group at orientation No Assert component Staying involved Act Early Group Autism Enhanced Book Assignment Parent Role, Staying involved Lisa’s Highlights and Suggestions