TY - JOUR
T1 - Home mechanical ventilation for children with severe neurological impairment
T2 - Parents' perspectives on clinician counselling
AU - Bogetz, Jori F.
AU - Munjapara, Vasu
AU - Henderson, Carrie M.
AU - Raisanen, Jessica C.
AU - Jabre, Nicholas A.
AU - Shipman, Kelly J.
AU - Wilfond, Benjamin S.
AU - Boss, Renee D.
N1 - Funding Information:
We thank the parents who participated in the study and generously shared their perspectives with us. This work was funded by the National Palliative Care Research Center Pilot Grant Award Program (PI: Renee D. Boss). Funding for Dr Jori F. Bogetz was support by the Seattle Children’s Research Institute, Center for Clinical and Translational Research, Clinical Research Scholars Program. The opinions herein are those of the authors and do not necessarily represent those of the funders. The authors have stated that they had no interests which might be perceived as posing a conflict or bias.
Publisher Copyright:
© 2022 Mac Keith Press.
PY - 2022/7
Y1 - 2022/7
N2 - 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.
AB - 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.
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U2 - 10.1111/dmcn.15151
DO - 10.1111/dmcn.15151
M3 - Article
C2 - 35080259
AN - SCOPUS:85123572493
SN - 0012-1622
VL - 64
SP - 840
EP - 846
JO - Developmental Medicine and Child Neurology
JF - Developmental Medicine and Child Neurology
IS - 7
ER -