Pediatric Palliative Care for Children With Severe Neurological Impairment and Their Families
disability; complex chronic conditions; Pediatric; neuropalliative care; severe neurologic impairment
Up to 40% of patients cared for by pediatric palliative care teams have severe neurologic impairment (SNI). Children with SNI have congenital/chromosomal, central nervous system static or progressive conditions that result in lifelong cognitive disabilities and developmental delay. 1 These children often have complex care coordination and symptom management needs. Many children with SNI receive care from multiple subspecialists at tertiary pediatric hospitals, home nursing care, and developmental services through school or community programs. Palliative care teams can have a large impact through the ways they support these patients and families psychosocially, symptomatically, spiritually, and emotionally. 1
Bogetz JF; Lemmon ME
Journal of Pain and Symptom Management
2021
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<a href="http://doi.org/10.1016/j.jpainsymman.2021.01.008" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2021.01.008</a>
Forming Clinician-Parent Therapeutic Alliance for Children With Severe Neurologic Impairment
Clinician; Collaboration; Parents; Pediatric; Severe neurologic impairment
OBJECTIVES: Care for children with severe neurologic impairment (SNI) often involves complex medical decision-making where therapeutic alliance between clinicians and families is essential. Yet, existing data suggest that communication and alliance are often lacking. This study aimed to examine aspects important to developing therapeutic alliance between clinicians and parents of children with SNI. METHOD(S): A purposive sample of expert clinicians and parents of children with SNI completed brief demographic surveys and 1:1 semistructured interviews between July 2019 and August 2020 at a single tertiary pediatric academic center. Interviews focused on the inpatient experience and transcriptions underwent thematic analysis by a study team of qualitative researchers with expertise in palliative care and communication science. RESULT(S): Twenty-five parents and 25 clinicians participated (total n = 50). Many parents were mothers (n = 17, 68%) of school-aged children with congenital/chromosomal conditions (n = 15, 65%). Clinicians represented 8 professions and 15 specialties. Responses from participants suggested 3 major themes that build and sustain therapeutic alliance including: (1) foundational factors that must exist to establish rapport; (2) structural factors that provide awareness of the parent/child experience; and (3) weathering factors that comprise the protection, security, and additional support during hard or uncertain times. Participants also shared concrete actions that promote these factors in clinical practice. CONCLUSION(S): Therapeutic alliance between clinicians and parents of children with SNI consists of at least 3 factors that support communication and medical decision-making. These factors are facilitated by concrete actions and practices, which enhance communication about the care for children with SNI. Copyright © 2022 by the American Academy of Pediatrics.
Bogetz JF; Trowbridge A; Lewis H; Jonas D; Hauer J; Rosenberg AR
Hospital Pediatrics
2022
<a href="http://doi.org/10.1542/hpeds.2021-006316" target="_blank" rel="noreferrer noopener">10.1542/hpeds.2021-006316</a>