URELEND Family Directed Consultation

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

2. Introduction “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

3. Overview of Literature • 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).

4. Project Purpose • 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

5. Method: Participants and Survey • 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).

6. Procedures: Measures • 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

7. Results (cont.) Family-Centered Care (FCC) Composite Scores

8. Results (cont.) Table 9 Family Coping Skills (FCS) Composite Scores

9. Discussion • 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

10. Questions and Comments THANK YOU!

11. Nicole’sHighlights and Suggestions Parent Directed Consultations (PDC) Autism Support Services Education Research Training (ASSERT) Applied Behavioral Analysis (ABA) Facilitated Communication (FC) Transdisciplinary Teaming (TT)

12. Erin’sHighlights and Suggestions Autism Support Services Education Research Training (ASSERT)

13. Cindy’sHighlights and Suggestions Parent Directed Consultations (PDC) Autism Support Services Education Research Training (ASSERT)

14. Lisa’sHighlights and Suggestions Autism Enhanced Book Assignment Parent Role, Staying involved