Family Engagement in Early Intervention Services: Exploration of Family Experiences and Outcomes

Background and Purpose: Family engagement has received increased attention in early intervention (EI) programs in recent years. Research shows improved experiences and outcomes when families are involved in decision-making on the practice, program and policy levels. Robust engagement can also serve as a culturally responsive approach to improving outcomes for racial and ethnic groups. Despite advances in family engagement, there is limited empirical research focused on the experiences and outcomes of families of children with special healthcare needs who engage in EI programs. This paper is part of a larger evaluation study in partnership with the Massachusetts Department of Public Health Bureau of Family Health & Nutrition, which provides statewide programs and services to MA residents to ensure the health of all children and families in the Commonwealth, including children and youth with special needs. The paper examines family engagement in EI support and leadership programs.

Method: The research questions include: 1) how do families perceive and experience family engagement in EI services, and 2) what do families identify as critical components of family engagement? Data was taken from written testimonials (n=23) from families of children with special health care needs who received EI services between 2019 to 2022. The testimonials were analyzed by a multi-disciplinary team consisting of university researchers and a DPH practitioner with lived experience of having a child with special healthcare needs. The research team followed the six-phases of reflexive thematic analysis, a widely used systematic method for developing, analyzing, and interpreting patterns across a qualitative data set. The research team met weekly throughout data analysis for peer review and debriefing sessions.

Results: Data analysis identified seven themes related to family engagement in EI services including: building a community of support; development of skills and knowledge; program and system navigation; child and family outcomes; family voice, advocacy, and impact; transitioning in and out of EI; and COVID re-engagement. As the data were collected during the height of COVID-19, the results elucidate families’ experiences and priorities as they transitioned to online and hybrid EI services and supports.

Conclusion: Study results elevate the voices and experiences of families regarding engagement in EI services during the COVID-19 pandemic.They demonstrate how families build relationships with EI staff and other families with lived experience, develop skills to advocate for their child’s needs and other family’s needs, navigate complex systems and services, and promote positive child and family outcomes. The findings can be used by EI programs to develop and/or refine family engagement policy, practice and evaluation metrics.