Diversified caregiver input to upgrade the Young Children's Participation and Environment Measure for equitable pediatric re/habilitation practice.

BACKGROUND: Practitioner and family experiences of pediatric re/habilitation can be inequitable. The Young Children's Participation and Environment Measure (YC-PEM) is an evidence-based and promising electronic patient-reported outcome measure that was designed with and for caregivers for research and practice. This study examined historically minoritized caregivers' responses to revised YC-PEM content modifications and their perspectives on core intelligent virtual agent functionality needed to improve its reach for equitable service design. METHODS: Caregivers were recruited during a routine early intervention (EI) service visit and met five inclusion criteria: (1) were 18 + years old; (2) identified as the parent or legal guardian of a child 0-3 years old enrolled in EI services for 3 + months; (3) read, wrote, and spoke English; (4) had Internet and telephone access; and (5) identified as a parent or legal guardian of a Black, non-Hispanic child or as publicly insured. Three rounds of semi-structured cognitive interviews (55-90 min each) used videoconferencing to gather caregiver feedback on their responses to select content modifications while completing YC-PEM, and their ideas for core intelligent virtual agent functionality. Interviews were transcribed verbatim, cross-checked for accuracy, and deductively and inductively content analyzed by multiple staff in three rounds. RESULTS: Eight Black, non-Hispanic caregivers from a single urban EI catchment and with diverse income levels (Mdn = $15,001-20,000) were enrolled, with children (M = 21.2 months, SD = 7.73) enrolled in EI. Caregivers proposed three ways to improve comprehension (clarify item wording, remove or simplify terms, add item examples). Environmental item edits prompted caregivers to share how they relate and respond to experiences with interpersonal and institutional discrimination impacting participation. Caregivers characterized three core functions of a virtual agent to strengthen YC-PEM navigation (read question aloud, visual and verbal prompts, more examples and/or definitions). CONCLUSIONS: Results indicate four ways that YC-PEM content will be modified to strengthen how providers screen for unmet participation needs and determinants to design pediatric re/habilitation services that are responsive to family priorities. Results also motivate the need for user-centered design of an intelligent virtual agent to strengthen user navigation, prior to undertaking a community-based pragmatic trial of its implementation for equitable practice.

Participation-Focused Strategy Use Among Caregivers of Children Receiving Early Intervention.

IMPORTANCE: Evidence on common types of participation-focused caregiver strategies can help occupational therapy practitioners to take an evidence-based approach to designing participation-focused practice. OBJECTIVE: To identify and explore types of caregiver strategies to support young children's participation in valued occupations in the home and community. DESIGN: Qualitative study using a subset of data collected online with the Young Children's Participation and Environment Measure (YC-PEM). Narrative responses about strategy use were content coded to the family of Participation-Related Constructs (fPRC) framework using a deductive analytic approach to identify relevant types of participation-focused strategies used in the home and community. Responses were further analyzed within each relevant fPRC construct using an inductive analytic approach to identify the scope of strategies used for each construct. SETTING: Early intervention. PARTICIPANTS: Caregivers (N = 106) of young children receiving early intervention. OUTCOMES AND MEASURES: Caregivers' strategies to support their child's home and community participation, provided by the YC-PEM. RESULTS: Caregivers most commonly adapted the child's environment or context to support their child's home and community participation (45.06%). The least common focus of caregiver strategies was the child's activity competencies (11.16%). Three or more types of caregiver strategies were identified for each participation-related construct. CONCLUSION AND RELEVANCE: Results indicated that caregivers used a range of strategies related to each of the participation-related constructs to support their child's participation in home and community occupations, most commonly targeting the environment. Occupational therapy practitioners can select from this range of strategies when planning participation-focused early intervention with families. WHAT THIS ARTICLE ADDS: This study yields new evidence on the scope of caregiver strategy use to support young children's participation in home and community occupations. Occupational therapy practitioners can apply this evidence to anticipate common areas of caregiver strategy use in participation-focused practice with families in early intervention.