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Acute and Persistent Postoperative Functional Decline in Children with Severe Neurological Impairment: A Qualitative,
Liisa Holsti1,2,3, Sarah England1, Mackenzie Gibson1
1Department of Occupational Science and Occupational Therapy, University of British Columbia, Vancouver, BC V6T 2B5, Canada.
Insights
Caregivers reported significant functional decline and complications in children with severe neurologic impairment (SNI) after surgery. Enhanced preoperative information is crucial for family-informed care.
Area of Science:
- Pediatric Surgery
- Neurology
- Caregiver Support
Background:
- Children with severe neurologic impairment (SNI) often undergo major surgeries.
- Caregiver perspectives on long-term functional changes post-surgery are under-researched.
Purpose of the Study:
- To explore the functional postoperative recovery process for children with SNI from the caregiver's viewpoint.
Main Methods:
- Included caregivers of nonverbal children (6 months-17 years) with SNI (GMFCS IV/V) who had surgery.
- Collected demographic/health data and conducted semi-structured interviews.
- Utilized thematic content analysis for results.
Main Results:
- Identified four key themes: functional changes/complications, caregiver unpreparedness, perioperative support, and altered caregiver roles.
- Functional decline was prevalent in the study sample.
- Caregivers reported feeling unprepared for postoperative outcomes.
Conclusions:
- Postoperative functional decline is common in children with SNI.
- Preoperative information detailing potential functional changes is essential for family-centered care.
Background:
Children with severe neurologic impairment (SNI) regularly require major surgery to manage their underlying conditions. Anecdotal evidence suggests that children with SNI experience unexpected and persistent postoperative functional changes long after the postoperative recovery period; however, evidence from the perspective of caregivers is limited. The purpose of the study was to explore the functional postoperative recovery process for children with SNI.
Methods:
Eligible participants were English-speaking caregivers of children with SNI between 6 months and 17 years who were nonverbal, Gross Motor Function Classification Scale level IV/V, and who had surgery/procedure requiring general anesthetic at a tertiary children's hospital between 2012 and 2022. Demographic and basic health information were collected via surveys and corroborated by a review of the child's electronic health record. Semi-structured interviews were conducted and a thematic content analysis was used to formulate results.
Results:
Data from 12 primary caregiver interviews revealed four main themes: (1) functional changes and complications in the child; (2) feeling unprepared; (3) perioperative support; and (4) changes to caregiver roles.
Conclusions:
Postoperative functional decline in children with SNI was prevalent in our sample. Providing pre-operative information to families to describe this phenomenon should be a regular part of family-informed care.
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