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

Abstract

CONTEXT\nParents of children with severe neurologic impairment (SNI) often face high-stakes medical decisions when their child is hospitalized. These decisions involve technology/surgery, goals of care/advance care planning, or transitions of care.\n\n\nOBJECTIVE\nThis study describes the experiences of parents of children with SNI during decision-making.\n\n\nMETHODS\nEligible 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-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.\n\n\nRESULTS\n25 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.\n\n\nCONCLUSIONS\nDuring 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.