Engaging families to improve high-risk infant follow-up participation: a mixed methods study.

OBJECTIVE: Identify factors that impact attendance at a regional high-risk infant follow-up (HRIF) program and explore caregiver perceived barriers and facilitators to participation. STUDY DESIGN: A retrospective study identified factors associated with first visit non-attendance amongst infants referred to HRIF. Results guided recruitment for a mixed methods needs assessment including surveys and structured interviews to understand caregiver perspectives through inductive qualitative thematic analysis. RESULTS: Compared to infants who attended an initial HRIF visit, infants who did not attend had higher mean birthweight, public or no insurance, and maternal nativity outside the US. Qualitative prospective analyses revealed barriers and facilitators to HRIF program attendance were logistics, schedule, customer service, support for parental needs, knowledge, and attitude and motivation. CONCLUSION: Interventions to improve HRIF program participation should engage families at high-risk of non-attendance from the NICU stay onward and should focus on education, social needs, and customer service.