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The Impact of Caring for Children With Severe Neurological Impairment on Clinicians
Jori F Bogetz1, Amy Trowbridge1, Danielle Jonas2
1Division 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.
Abstract:
Clinicians face many challenges in caring for children with severe neurological impairment (SNI). This study aimed to understand expert clinician perspectives on the personal impact of caring for children with SNI to highlight the challenges and potential solutions by underscoring the aspects of care that can be sustaining. Twenty-five clinicians participated including physicians (n = 8, 32%), social workers (n = 5, 20%), nurses/nurse practitioners (n = 5, 20%), case managers (n = 3, 12%), developmental therapists (n = 2, 8%), and other psychosocial clinicians (n = 2, 8%). Clinicians represented a variety of specialties including complex care/hospitalists (n = 10, 19%), palliative care (n = 7, 13%), and critical care (n = 6, 12%). Thematic content analysis revealed 3 major themes: (1) worries and challenges; (2) positive impact from being present; and (3) personal growth and meaning-making. Many clinicians described the ways listening, examining biases, learning about family perspectives, and normalizing the need for emotional processing helped them to understand their patients, families, and themselves more deeply.
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