Jessica M Jarvis1, Andrea R Gurga1, Heather Lim1, Jill Cameron2, Jan Willem Gorter3, Karen Choong3, Mary A Khetani4. 1. Department of Occupational Therapy, University of Illinois at Chicago, Chicago, Illinois. 2. Department of Occupational Science and Occupational Therapy, University of Toronto, Toronto, Ontario, Canada. 3. Department of Pediatrics, McMaster University, Hamilton, Ontario, Canada. 4. Department of Occupational Therapy, University of Illinois at Chicago, Chicago, Illinois. Electronic address: mkhetani@uic.edu.
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.
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.
Authors: Catherine Madurski; Jessica M Jarvis; Sue R Beers; Amy J Houtrow; Amy K Wagner; Anthony Fabio; Chunyan Wang; Craig M Smith; Lesley Doughty; Keri Janesko-Feldman; Pamela Rubin; Dorothy Pollon; Amery Treble-Barna; Patrick M Kochanek; Ericka L Fink Journal: Neurocrit Care Date: 2021-03-04 Impact factor: 3.532