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

  • Jori F. Bogetz
    Correspondence
    Address correspondence to: Jori F. Bogetz, MD, Seattle Children's Research Institute, 1900 Ninth Ave, JMB-6, Seattle, WA 98101, USA.
    Affiliations
    Division of Bioethics and Palliative Care, Department of Pediatrics, University of Washington School of Medicine, Palliative Care and Resilience Lab, Center for Clinical and Translational Research; Seattle Children's Hospital and Research Institute, Seattle, WA, USA
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  • Amy Trowbridge
    Affiliations
    Division of Bioethics and Palliative Care, Department of Pediatrics, University of Washington School of Medicine, Palliative Care and Resilience Lab, Center for Clinical and Translational Research; Seattle Children's Hospital and Research Institute, Seattle, WA, USA
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  • Hannah Lewis
    Affiliations
    Treuman Katz Center for Bioethics, Center for Clinical and Translational Research, Seattle Children's Research Institute, Seattle, WA
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  • Kelly J. Shipman
    Affiliations
    Palliative Care and Resilience Lab, Center for Clinical and Translational Research, Seattle Children's Research Institute, Seattle, WA
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  • Danielle Jonas
    Affiliations
    Silver School of Social Work, New York University; New York, NY
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  • Julie Hauer
    Affiliations
    Seven Hills Pediatric Center; Assistant Professor, Division of General Pediatrics, Department of Pediatrics, Harvard Medical School; Boston Children's Hospital, Boston, MA
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  • Abby R. Rosenberg
    Affiliations
    Division of Hematology/Oncology, Department of Pediatrics, University of Washington School of Medicine; Palliative Care and Resilience Lab, Center for Clinical and Translational Research, Seattle Children's Hospital and Research Institute, Seattle, WA
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      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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