P2.142: Supporting Parents’ Early Action for Kids (SPEAK-Up): A Parent-Informed Virtual Support Group for Families Navigating Early Intervention Services

Background: Early Intervention (EI) services are designed to enhance the development of children birth to age 3 who have disabilities or delays. Illinois’ EI program is not meeting targets for service initiation within 30 days of Individual Family Service Plan consent. Chicago families describe challenges related to wait times and lack of communication and support in navigating services. Families with less education, lower income, lack of or public insurance, non-English primary language, and marginalized racial/ethnic identities have lower referral rates and more negative experiences starting EI services. Our multi-disciplinary health collaborative at Lurie Children’s Hospital developed SPEAK-Up, an innovative virtual support group that incorporates educational content and peer support to empower caregivers as they await EI services in communities with traditionally less EI access. To guide program content, design, and delivery, our team conducted a qualitative needs assessment to elicit parent experiences during EI referrals and perspectives on the proposed SPEAK-Up support group.

Methods: A convenience sample of participants was recruited from families engaged in Lurie Children’s Hospital maternal-child health services. Inclusion criteria were English- or Spanish-speaking caregivers with at least one child who had been referred to EI. We conducted semi-structured interviews via Zoom or telephone that included questions about parents’ experiences with EI referral, thoughts on the proposed goals of SPEAK-Up (Table 1), and suggestions for program content and delivery. Interviews with Spanish-speaking parents were conducted by a Spanish-speaking interviewer or with a certified interpreter. Interviews were transcribed verbatim, and qualitative analysis of transcripts was completed using Dedoose software. Codes were analyzed by frequency and theme.

Results: We conducted 12 interviews, including four with Spanish-speaking parents. Half of parents indicated either lack of or only partial understanding of why their child was referred to EI, with 41.7% of parents wanting more of an explanation. Eight parents experienced longer-than-expected wait times, and four reported not knowing how to contact EI after being referred. The proposed goals of SPEAK-Up resonated with parents, with all parents indicating they shared at least one of the program’s goals. Ten parents expressed interest in attending SPEAK-Up, and all parents identified potential benefits of the program. The most frequently mentioned benefit (41.7%) was learning new ways to support their child’s development. Eleven parents identified potential barriers related to SPEAK-Up, most frequently related to scheduling conflicts. Parents offered suggestions for program design, delivery, and content, and advice for other parents. Illustrative quotes are presented in Table 2.

Conclusion: Parents in this study expressed the need for more support obtaining and understanding EI services. Informed by parent feedback, SPEAK-Up will be better able to meet parents’ needs to support their child’s development and promote engagement with EI. Ongoing program evaluation is planned.