Parents Are the Experts: A Qualitative Study of the Experiences of Parents of Children With Severe Neurological Impairment During Decision-Making.

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 experti

SUBMITTER: Bogetz JF 

PROVIDER: S-EPMC8648906 | biostudies-literature | 2021 Dec

REPOSITORIES: biostudies-literature