P3.C058: Title: Parent Navigators to Support Service Access in a Pediatric Medical Home: Qualitative Analysis of Family Perspectives

Background: Families face multiple barriers when they attempt to access early intervention (EI) or other needed services for children with developmental delays or disabilities. We implemented an innovative Parent Navigator (PN) program, embedding parents with lived experience as having their own children with autism, in a pediatric primary care clinic to provide family support and navigation to our state’s EI centers or Developmental Disability (DD) service centers, as well as other needed services. The purpose of this study was to evaluate the experience of parents served by the PN program.

Methods: The list of families served by the PN program was used to recruit interview participants. Inclusion criteria were families who had been served by the PN program and who were English or Spanish speaking. Interviews were conducted over the phone by an investigator experienced in qualitative analysis and included questions about the family’s experience with the PN program and satisfaction with this service. A phone-based professional interpreter was utilized to conduct interviews in Spanish. Recordings were then transcribed were uploaded into NVivo, a qualitative analysis program. Data was analyzed by following the guidelines of the Framework Method for Qualitative Analysis.

Results: Out 36 families who were contacted to be interviewed, 18 agreed. 5 interviews were conducted in Spanish, 13 were conducted in English. Each of the 3 investigators from different disciplines reviewed transcripts and openly developed codes, which were then discussed as a group to achieve consensus. Next, a working analytical framework was developed which most closely aligned with narrative analysis, and codes were grouped into larger categories including background, barriers, facilitators, and the “coda” or conclusion (See Table 1). Overall, parents felt that the PNs were helpful and appreciated their lived experience, and frequently commented on the benefit of the PNs' accessibility and assisting with logistics. One parent commented about the PN that “I feel even more confident because she lived the same experience in her own flesh and it provides her a different perspective.” Another stated “The fact that she gave me a number and was like I can text her was actually [great], because I’m not a big phone call person because I have usually like 10,000 things going on. But because she was like, ‘Just text me when you can’ I was like, ‘wow, okay, I like you.’”

Conclusion: Parents identified facilitating aspects of the PN program including PNs’ lived experience, accessibility, and supporting parents in their advocacy efforts. Many parents reported that they did not think the services they obtained for their children would have been possible without the PN’s assistance. Future studies that track outcomes of families and children supported by PNs and that evaluate cost-effectiveness of such programs should be conducted.