Informing Model Articulation by Eliciting the Family Experience: A Pilot Study of the Special Start Neonatal Follow Up Program

Summary: 
The aims of this study were to (a) describe the Special Start intervention model in detail, and (b) describe families’ experiences of premature birth and coping with stressors; bringing these together in a program manual and proposal for outcome evaluation.

nurse at a home visit with a mother and baby

Principal Investigators:
Laura Frame, PhD | UCSF Benioff Children’s Hospital Oakland


Background

Infants born prematurely face many challenges during hospitalization, through the transition process from hospital to home. Caring for a premature baby at home can be further complicated for parents grappling with poverty, violence, migration and other stressors. For 20 years, UCSF Benioff Children’s Hospital Oakland has operated a specialized home-based program, Special Start, for families of premature babies at high social risk.

Objective

The aims of this study were to (a) describe the Special Start intervention model in detail, and (b) describe families’ experiences of premature birth and coping with stressors; bringing these together in a program manual and proposal for outcome evaluation.

Method

This qualitative study used a theory of change approach that visually outlines the “how” and “why” a service model is believed to be effective in reaching its goals. Two rounds of focus groups and interviews were conducted with 10 former Special Start participants and 17 staff members, each. These were audiotaped and transcribed, and narratives were analyzed for key themes.

The perspectives of families and staff converged around a core set of intervention principles. At the foundation of Special Start’s model are 6 basic tenets: it is relationship-based; trauma-informed; flexible and family-driven; race, place and class matter; it is multidisciplinary; and interventions reach “beyond baby”. From there, interventions address a range of basic, psychosocial, and health/developmental needs, supporting parents to become confident experts on their own child; establish a strong, positive parent-child relationship; and to have the tools to handle future challenges. The ultimate goal is that children are healthy and developing well in strong, healthy families.

Results

The study resulted in a detailed program manual for Special Start, in which interventions are described and illustrated in the words of former Special Start participants. A proposal for further evaluation of Special Start is provided.