CBPR and Measure Validation: Working with Tribal Communities to Explore the Feasibility and Cultural Fit of a Screener for Developmental Problems in Early Childhood

Research on the effects of interventions with American Indian and Alaska Native (AIAN) children are often hampered by the lack of appropriate and validated measurement tools; without such tools, outcomes cannot be adequately assessed and interventions cannot be adequately evaluated.  Standardized measures developed and normed in the general population typically have little or no data on AIAN populations; research often moves forward assuming measures are good enough, even while doubts about their appropriateness remain. 

In this study, the Tribal Early Childhood Research Center (TRC) engaged tribal partners on a national level to review the Survey of Well-being of Young Children (SWYC), a new screening tool for developmental, social, and emotional problems in children birth to five years. The SWYC has been validated in pediatric settings, but AIAN children were not included in the validation sample in sufficient numbers to analyze. Given the promise of the SWYC in other settings, however, the TRC undertook a study of the feasibility of the SWYC in tribal communities. A Community of Learning (CoL) arising out of the TRC, made up of tribal early childhood program leaders, university researchers, and federal program partners, designed a study to gather input from key tribal stakeholders.    

The CoL engaged seven culturally and geographically diverse tribal communities for focus group and key informant interviews. Communities were selected to represent the diversity in AIAN groups (reservations and urban communities; five geographic/cultural regions).  A total of 32 focus groups and 20 key informant interviews were conducted with 199 participants, including pediatricians, tribal early childhood staff, mental health providers, parents, tribal government leaders, and tribal elders. 

Three themes emerged from the qualitative analysis of interview notes and transcripts.  First, a strong need to screen for early problems was identified, related to challenges to early development, gaps in parental knowledge about development, barriers to early screening, and insufficient resources for early intervention.  Second, concerns about the process of screening suggested that screening should be simple, engage parents fully, use Native language where appropriate, be done by appropriate providers and in appropriate service settings, include transparency in how data will be used and shared, and ensure referral processes for children identified at risk.  Third, while the content of the SWYC was lauded for being comprehensive and generally suitable in most tribal contexts, concerns were raised about accurate norms for AIAN children and suggestions were made to review all items cultural appropriateness. 

 Findings support two recommendations: (1) In the short term, guidelines for use of the SWYC with Native children and families are needed to assist in current screening efforts; (2) in the longer term, a validation study is needed appropriate norms for this population should be established.  This study highlights the usefulness of community engagement in the process of developing measures for use with AIAN children.