Prior to the start of the study in 2018, we interviewed the innovation developers (n=16) and members of an early childhood systems transformation effort that was already underway in each community (n=11). The purpose of this investigation was to understand the innovations and implementation plans at study outset. The systems transformation effort in each community is the Early Childhood Learning and Innovation Network for Communities (EC-LINC; https://cssp.org/our-work/project/early-childhood-learning-and-innovation-network-for-communities/). In this model, an early childhood brokering or hub organization works with specific community partners to strengthen systems and services to better meet the needs of families with young children. Within the five communities studied, pediatric health care clinics self-selected and received resources to implement one of the innovations that are in our study. We describe each data collection method next. For quantitative data collection with families, Field Interviewers completed the interviews (see Parent/Caregiver Interview section). For qualitative interviews and focus groups, PhD, M.A. and B.A.-level study research team members (e.g. Researcher, Research Associate) trained in qualitative design, analysis and interviewing conducted data collection. Interviews and focus groups lasted 45 to 90 minutes and were audiotaped and transcribed.
The study commenced in 2018 with data collection involving three groups: (1) community service providers, (2) the early childhood organizations, and (3) families with young children. We conducted focus groups with providers in each community and included participants (n = 36) recruited by the early childhood organizations such as mental and behavioral health providers, child care and early education providers, home visiting providers, regional centers, and public health departments. The focus groups inquired about approaches to mitigating toxic stress, healthcare-early childhood partnerships, policies and practices related to screening and referral for social needs, and family engagement strategies. With early childhood organizations, we inquired about the vision for early childhood-healthcare partnerships and lessons learned from DULCE and I-SCRN implementation and from supporting Help Me Grow as a centralized referral network.
We conducted focus groups with parents and caregivers (e.g. foster parents) in each community who had accessed early childhood or other community services (n = 45). Parents or caregivers with young children were recruited by early childhood organization staff and community service providers and were diverse in terms of their early childhood and community service experiences. Some of the caregivers were considered leaders in their community, and others were recruited because they had accessed one or more services such as home visiting or healthy pregnancy programs, and were known to the early childhood organization or provider/s. The 90-minute focus groups inquired about interactions with community providers and experiences with pediatric primary care in their community.
We partnered with one of the states in the study to understand the role of Help Me Grow in facilitating the referral network and bridging health care and community-based services for families. The purpose was to learn from HMG staff, community providers, health care providers, and families about their experiences with the roles of HMG as a centralized early childhood referral system. Staff at Help Me Grow affiliate locations (two urban and one rural/suburban) participated in 45-minute interviews (n = 13). Families with young children (n = 17) and community providers (n = 24) in each location participated in focus groups. The 60-minute focus groups with families and providers explored facilitators and barriers to participating in the centralized referral system and critical opportunities to strengthen referral pathways in each community. Healthcare providers (n = 11) also participated in interviews addressing the same topics.
We collected data from health care clinic staff at two time points to reflect earlier and later stages of implementation of the innovations. In 2018, we conducted interviews with members of each clinic’s innovation team (n = 54). The interviews focused on core innovation components, opportunities, and barriers to integrating social need screening into the practice’s standard of care. Participants were physician or nurse practitioner innovation “champions,” trained family specialists, social workers, clinic administrators, and other salient team members supporting implementation. We then surveyed a broader group of clinic staff in 2019. We invited staff at each clinic (physicians, pediatricians, nurse staff, medical assistants and physician assistants) to complete an online survey, resulting in 63 completed surveys. The survey was designed to measure clinician attitudes and practices related to early childhood healthcare services, screening, and perceptions of occupational burnout.
We also conducted fifteen 90-minute focus groups (n = 110) with parents and caregivers in 2019 to examine how families experienced the health innovations at participating clinics. The focus groups inquired about experiences with screening and referral for social needs in the clinic setting, and interactions with community providers following referrals. These participating families were recruited from clinic implementation team members and early childhood organizations and referred to the study team. Reflecting the languages preferred by families served by the clinics, we conducted 7 focus groups in English and 8 focus groups in Spanish; at least one focus group was conducted at each clinic.
Electronic Health Records
The study used electronic health record (EHR) and Medicaid administrative data to examine trends in quality of care, health care utilization and financial impact of the innovations. Outcomes assessed include: health care quality (adherence to immunization and well-child visit schedules, developmental, maternal depression, and lead screening, and continuity of care); ambulatory care-sensitive hospitalizations; avoidable Emergency Department (ED) visits; and urgent care use among children served in the participating clinics. These data were used to analyze Medicaid spending on service use (recommended preventive versus urgent care/hospitalization) to inform the cost value of the innovations. We extracted the EHR and Medicaid data for all children age birth to two served in the participating study clinics from January 1, 2014 (corresponding with implementation of the Affordable Care Act) to February 29, 2020 (corresponding to study end). For each outcome using these data, analyses compare children’s health care and ED use before and after implementation of the innovations, as well as outcomes for children who did and did not receive the innovations.
Parent/Caregiver Survey Interview
This element of the study design was intended to bring the voices of the many families engaged with participating clinics into consideration of their experiences. Aiming to enroll 110 families (i.e., caregivers and infants) per clinic, individual survey interviews were conducted with caregivers (mostly parents) who received services at the nine participating clinics. Surveys were administered in person by local field interviewers experienced in data collection; from the communities where the clinics are located; and bicultural and fluent in English and Spanish and in one community: Haitian-Creole. Interviewers contacted parents and obtained consent for three survey waves: enrollment (2 weeks to 6 months of birth), mid-point (infant age 7-11 months), and final (infant age 12-15 months). Each interview was scheduled to allow a period of no fewer than 30 days between interview waves. Data sharing agreements enabled collaboration between Chapin Hall and clinic staff and between clinics and field interviewers. Recruitment strategies were discussed, reviewed, and refined collaboratively with clinics throughout recruitment and interviewing to accommodate clinic flow and patient protection. Early challenges to recruiting families led to highly effective collaborative decisions. Recruitment techniques included waiting room recruitment (field interviewers approached families in the waiting room), warm hand-offs from clinic staff to the field interviewer, clinic staff introducing the study to parents by phone followed by field interviewer phone contact, and texting parents. Our strategy included field interviewer supervision by a bilingual and bicultural researcher that incorporated reminders, empathy, and problem-solving using real-time information and data about contact attempts and interview completion rates with parents. Field interviewers (1 to 2 per clinic) were provided monthly graphics that depicted their progress-towards-goals based on the targeted recruitment number, also discussed during monthly individual supervision. Study retention was 84% at midpoint, and 78% at the final interview.
Sample Description and Measures
The final study sample included 908 parents, primarily mothers (97.6%) averaging age 29.5 years. Nearly two-thirds report two-parent households (married = 42.2%, domestic partner = 26.8%). Additionally, the sample was predominately comprised of parents who report Hispanic ethnicity (69.2%). Target children in the sample were 46.9% male. Finally, although the mean income across the sample of $37,788 depicted a moderate income-level, across study sites, income varied substantially. Of note, families at six of the clinics reported average income near or below the Federal Poverty Line for a family of 5 (FPL = $30,170). The enrollment interview was completed by 97% of the sample (n=885). Table 1 presents sample demographics.
Parent Survey Measures
Parents’ enrollment interviews included a group of established and newly developed measures of five areas of family experiences: (1) the home and neighborhood environment, (2) parent adverse childhood experiences, (3) resilience and personal mastery, (4) parenting, and (5) access to social support and resources. Measures were selected to provide a snapshot of comprehensive household and environmental risk and protective factors in infancy among families receiving pediatric care in participating clinics. The study will use this snapshot to examine how clinic engagement and support for impacted families entering pediatric care with diverse constellations of strengths and needs. Among the measures assessed at enrollment, we collected parents’ report of Adverse Childhood Experiences (ACEs), using the expanded scale developed by the Center for Youth Wellness (24). Though primarily interested in current household and environmental circumstances, caregiver ACEs are associated with factors directly impacting the child’s environment, including caregiver mental health, substance use, and relational well-being and were therefore important to capture as part of the overall assessment of the household.