Abstract
Context
Parents of children with severe neurologic impairment (SNI) often face high-stakes
medical decisions when their child is hospitalized. These decisions involve technology
and/or surgery, goals of care and/or advance care planning, or transitions of care.
Objectives
This study describes the experiences of parents of children with SNI during decision-making.
Methods
Eligible participants were parents facing a decision for a child with SNI admitted
to acute or intensive care units at a single tertiary pediatric center. Parents completed
1:1 semi-structured interviews and brief surveys between August 2019 and February
2020. Demographic information was extracted from the child's electronic health record.
A team of palliative and complex care researchers with expertise in qualitative methods
used thematic content analysis to formulate results.
Results
25 parents participated. The majority had children with congenital/chromosomal SNI
conditions (n = 13, 65%), >5 subspecialists (n = 14, 61%), and chronic technology assistance (n = 25, 100%). 68% (n = 17) were mothers and 100% identified as being their child's primary decision-maker.
Responses from parents included 3 major themes: 1) our roles and actions; 2) our stresses
and challenges; and 3) our meaning and purpose. Responses highlighted the pervasiveness
of parental decision-making efforts and parents’ advocacy and vigilance regarding
their child's needs. Despite this, parents often felt unheard and undervalued in the
hospital.
Conclusion
During hospitalizations, when parents of children with SNI often face high-stakes
medical decisions, interventions are needed to support parents and ensure they feel
heard and valued as they navigate their child's medical needs and system challenges.
Key Words
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Article info
Publication history
Published online: June 17, 2021
Accepted:
June 10,
2021
Footnotes
Abbreviations: SNI—severe neurological impairment.
Identification
Copyright
© 2021 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
