Parent Directed Consultation Evaluation URLEND Leadership Project 2013 Marla Ambrose, Allison Ellzey, Bethany Rigles, Daniel Roberts, Vanesa Webb, Lisa Wilson

Parent Directed Consultation  URLEND created the PDC model in 2005  The only LEND program to do this  Annual improvements  Family and Trainee satisfaction

Parent Directed Consultation Evaluation  Purpose 1.Learn more about families participating in URLEND PDCs with respect to demographics, child needs, and services the family has received 2.Assess family coping skills prior to and one month following their participation 3.Evaluate family perceptions of the family- centeredness care received from community providers before and after participation

Methods  Participants  9 parents representing 11 children  Recruited by URLEND trainees and faculty  Procedures  IRB approval  3 online surveys  Pre-survey, Immediate (1 week) follow up, and 1 month post-survey  Family-Centered Care Self Assessment Tool

Results  Families: 9  8 mothers, 1 father  22 – 45 years of age (mean = yrs)  Primary language  English: 6  Spanish: 2  Not identified: 1  Religious orientations  Christian: 2  Catholic: 2  Latter Day Saint: 4  Spiritual but not religious: 1

Results  CSHCN  2 – 10 years of age (mean = 5.11 yrs)  9q34 duplication  Autism  Pervasive developmental disorder – not otherwise spedicfied  Attention Deficit and Hyperactivity Disorder  Trisomy 21/Down Syndrome  Chiari Malformation  Optic Nerve Drusen  Auditory Processing Disorder  Hearing loss  Cognitive Memory Disorder  Speech/Language Disorder  Mosaic Triploidy Syndrome  Scoliosis  Seizure Disorder

Results Service Children receiving service pre-PDC Children receiving service at time of pre- PDC survey PT72 OT65 SLP87 Audiology54 Nutrition20 Special Education77 Genetics42 Psychology or Psychiatry 42 Early Intervention84 Social Work11 Table 1: Services Received by CSHCN participating in PDCs

Results  Immediate follow-up survey  100% reported that trainees in the PDC:  Listened to and addressed their concerns  Respected their cultural and spiritual beliefs  Included them and their families as active members of the team  Length of PDC was adequate to address their concerns

Discussion  “Multiple perspectives - unbiased representation of the facts”  “There were people attending that didn't present themselves, and we don't know why they were there for, and although it wasn't uncomfortable for us, it may be an issue in other circumstances or with other families.”  “I didn't put together until we were there it was a video conference. I just thought the people from the other places would have the info for us in a report. It was better on the video, just a surprise.”

Discussion  Limitations  Families were self-selected  Family relationships with trainees  Lack of diversity  Small sample size  Future Research  Larger sample size  Examine disparities in satisfaction and ease of service across different subcategories

Marla Ambrose  Most significant learning experience  Truly enjoyed the clinical experience with interdisciplinary collaboration and teamwork  URLEND lectures continue to challenge clinical practice  Self-evaluation on leadership skills  Possible areas to improve  Clearer timelines for projects  Greater access to interdisciplinary models outside of Salt Lake

Allison Ellzey  Most valuable “take home” message:  Learning about family-centered care from families is an entirely different (and richer and truer) experience than learning about family-centered care from “professionals” or from a book  Ideas for future  Studying family-centered care knowledge and skills in area training programs  Piloting a family-directed family-centered care module in an area training program (pediatrics residency, graduate program, etc.)  Continuing to foster respect for a variety of leadership styles

Bethany Rigles  Include an online discussion forum  Use Canvas (or similar program) to allow trainees to ask questions and share relevant experiences related to the week’s topics  Increased communication skills and knowledge about how other disciplines are utilizing and applying LEND content

Daniel Roberts  Genetics clinic for families with children with hearing loss  Working closely as part of an interdisciplinary team  Updated website  Opportunity for trainees to share their experiences with other trainees (newsletter, website)

Vanesa Webb  Different perspective as a second year trainee  Innovative ways of promoting CC among URLEND trainees

Lisa Wilson  I enjoyed making connections and achieving a greater understanding of the disability community  Include an option for a “parent or family professional” in the family trainees  Family professionals could use URELEND for professional development in addition to providing a family perspective to the groups and didactic sessions  A Family Professional trainee would have stronger requirements than a typical family trainee: Required hours, completion and inclusion in the reflection papers and should have a fair stipend if they are completing the same requirements  There is a need for Family Professional Leadership Development in our field; and we all benefit from seeing families as professionals to develop as leaders