Date Presented 04/06/19
Trends in participation-focused strategies used by caregivers of critically ill children who did and did not receive PICU rehabilitation services were identified. Strategies were coded as child focused or to an environmental chapter of the ICF-CY. Caregivers can identify participation-focused strategies, but may benefit from education by their rehabilitation team to develop a broader range of strategies to promote their child’s home participation.
Primary Author and Speaker: Andrea Gurga
Contributing Authors: Jessica Jarvis, Mary Khetani, Karen Choong
PURPOSE: More children are surviving critical illness, and thus discharged from the pediatric intensive care unit (PICU) with new functional limitations. Functional recovery is a slow process and may take years, but prior research has identified the environment as a predictor of participation post-PICU. Therefore, it is crucial to build granular knowledge on caregivers' use of participation focused strategies, specifically types of environmentally-focused strategies, to facilitate their child's home participation. The purpose of this study was to identify trends in the types of strategies that caregivers use to facilitate their child’s participation in home occupations after discharge from a PICU. We examined trends for the total sample and subgroups of children who did and did not receive rehabilitation services in the PICU.
DESIGN: A qualitative sub-study of a prospective cohort study. Participants were caregivers (n=168) of children 1-17 years old who were admitted at two PICU sites for > 48 hours and had data on PICU rehabilitation service use.
METHOD: Data on caregiver strategy use were collected via open-ended items in the Participation and Environment Measures (PEM) administered at PICU discharge, and at 3 and 6 months post-PICU discharge. Rehabilitation service use data was obtained via electronic medical record during the PICU stay and dichotomized (yes, no). Strategies were independently content coded by 3 staff, either to one of the five environmental chapters of the International Classification of Functioning, Disability, and Health: Children & Youth Version (ICF-CY) or as a child focused strategy. A deductive analytic approach was used and completed in three rounds.
RESULTS: Caregivers identified some child focused strategies (11%), and the rest of the strategies ranged across all environmental domains of the ICF-CY. The majority of the strategies identified by caregivers (60%) coded to supports/relationships. The second most common strategy pertained to the use of products and technology (13%). The natural environment (11%), services (0.03%), and attitudes (0.01%) were least commonly identified strategies. Similar trends in strategy use were identified among caregivers whose children did and did not received rehabilitation services in the PICU.
CONCLUSION: Caregivers of critically ill children are able to report on a range of strategies to support their child’s participation in occupations at home. Caregivers most commonly report on ways to foster positive supports/relationships at home versus other strategies, such as tailoring the natural environment the activities take place in. These results highlight pertinent areas of educational need that can inform caregiver education practices during the child’s PICU stay to foster positive transitions for families.
IMPACT STATEMENT: Although caregivers are able to identify participation focused strategies, they may benefit from further education by their rehabilitation team to develop a wider variety of strategies for promoting their child’s participation in occupations within the home.
References
Khetani, M.A., Albrecht, E.C., Jarvis, J.M., Pogorzelski, D. , Cheng, E., & Choong, K. (2018). Determinants of change in home participation among critically ill children. Developmental Medicine & Child Neurology. 1-8. doi:10.1111/dmcn.13731
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