Abstract
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.
Keywords
List of abbreviations:
ICF-CY (International Classification of Functioning), Disability (and Health–Children and Youth Version), PEM (Participation and Environment Measure), PICU (pediatric intensive care unit)To read this article in full you will need to make a payment
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Article info
Publication history
Published online: July 03, 2019
Footnotes
Supported by the Academic Health Sciences Alternative Funding Plan Innovation Fund (grant no. NCT02148081) (Choong and Fraser) and the National Institutes of Health (grant no. K12 HD05593 and L40 HD085277) (Khetani). The content is solely the responsibility of the authors and does not necessarily represent the official views of the funding agencies.
Disclosures: none.
Identification
Copyright
© 2019 by the American Congress of Rehabilitation Medicine
