Caregiver Strategy Use to Promote Children's Home Participation After Pediatric Critical Illness.

OBJECTIVES: The primary objectives are to assess the most common type of caregiver strategy (remedial vs compensatory) reported for supporting their child's home participation after critical illness and identify themes in compensatory strategies described, with a secondary objective to describe themes in strategy use as reported by caregivers of children who did and did not receive pediatric intensive care unit (PICU) rehabilitation services. DESIGN: Qualitative substudy of the Wee-Cover prospective cohort study. SETTING: Two PICU sites. PARTICIPANTS: Wee-Cover enrolled caregivers (N=180) of children 1-17 years of age, who were admitted to a PICU for ≥48 hours. This study excluded participants missing relevant data (n=12). INTERVENTION: Not applicable. MAIN OUTCOME MEASURES: Qualitative data were gathered from open-ended questions on strategies within the Participation and Environment Measure at PICU discharge and 3 and 6 months post-PICU discharge. Strategies were classified as remedial or compensatory pending their content fit with 1 of 5 environmental chapters in the International Classification of Functioning, Disability, and Health-Children and Youth Version. Data on PICU-based rehabilitation services were obtained prospectively from electronic medical records and dichotomized (yes or no). RESULTS: Most caregiver strategies were compensatory, with more than half (60%) of the strategies pertaining to fostering supportive relationships. In contrast, strategies addressing the child's natural environment (12%), services (3%), and attitudes of others in the home (1%) were least commonly described. Similar themes were identified for caregivers whose children did and did not receive PICU rehabilitation services. CONCLUSIONS: Caregivers identify a range of strategies to facilitate their child's participation in home activities post-PICU discharge, but primarily report on strategies for addressing supports and relationships in the child's home environment. Results highlight areas warranting caregiver education to support the child's participation after critical illness.

Usability of the Participation and Environment Measure Plus (PEM+) for Client-Centered and Participation-Focused Care Planning.

IMPORTANCE: The Participation and Environment Measure Plus (PEM+) is a new electronic health application to help caregivers contribute to client-centered and participation-focused care planning for their young child. The PEM+ is designed to help caregivers build on their participation assessment by determining priority activities, setting specific goals, and identifying strategies for goal attainment. OBJECTIVE: To examine the usability of the PEM+. DESIGN: A single-arm usability trial. SETTING: Two early intervention and early childhood educational programs. PARTICIPANTS: Six caregivers of children ages 0-3 yr with developmental delay and receiving rehabilitation services. INTERVENTION: Caregivers who were eligible and enrolled were given access to the PEM+ for 1 wk and instructed to complete one iteration. OUTCOMES AND MEASURES: Usability was assessed according to caregivers' report of PEM+'s technical effectiveness and ease of use, ease of learning, and user satisfaction via the Usefulness, Satisfaction, and Ease of Use questionnaire. RESULTS: All caregivers completed the PEM+ online once and in its entirety (mean completion time = 13.6 min). Mean technical effectiveness ratings ranged from 5.7 to 6.3 out of 7.0, and mean ease of use, ease of learning, and user satisfaction ratings were 4.4, 5.4, and 4.2 out of 6.0, respectively. CONCLUSIONS AND RELEVANCE: Caregivers of young children can navigate the PEM+. Trends in survey feedback informed optimizations for the PEM+ before further feasibility testing. WHAT THIS ARTICLE ADDS: This study provides preliminary evidence for a promising tool that can help to customize the way practitioners partner with families to create a plan for occupational therapy services.