Home mechanical ventilation for children with severe neurological impairment: Parents' perspectives on clinician counselling

• Published in: Developmental medicine and child neurology 2022-07, Vol.64 (7), p.840-846
• Main Authors: Bogetz, Jori F., Munjapara, Vasu, Henderson, Carrie M., Raisanen, Jessica C., Jabre, Nicholas A., Shipman, Kelly J., Wilfond, Benjamin S., Boss, Renee D.
• Format: Article
• Language: English
• ISSN: 0012-1622; 1469-8749
• DOI: 10.1111/dmcn.15151

Aim To retrospectively explore the perspectives of parents of children with severe neurological impairment (SNI), such as those with severe cerebral palsy, epilepsy syndromes, and structural brain differences, on clinician counseling regarding home mechanical ventilation (HMV). Method Inductive thematic analysis was performed on data from telephone interviews with parents who chose for and against HMV for their child with SNI at three academic children’s hospitals across the USA. Results Twenty‐six parents/legal guardians of 24 children were interviewed. Fourteen children had static encephalopathy, 11 received HMV, and 20 were alive at the time of parent interviews. Themes included how HMV related to the child’s prognosis, risk of death, and integration with goals of care. Although clinicians voiced uncertainty about how HMV would impact their child, parents felt this was coupled with prescriptive/intimidating examples about the child’s end of life and judgments about the child’s quality of life. Interpretation While prognositc uncertainty exists, this study suggests that parents of children with SNI seek clinician counseling about HMV that considers their goals of care and views on their child’s quality of life. This original article is commented on by Beeri on page 812 of this issue.