From Monochromatic to Technicolor: Parent Perspectives on Challenges and Approaches to Seeing Children with Severe Neurological Impairment Holistically

Title

From Monochromatic to Technicolor: Parent Perspectives on Challenges and Approaches to Seeing Children with Severe Neurological Impairment Holistically

Creator

Bogetz JF; Lewis H; Trowbridge A; Jonas D; Hauer J; Wilfond BS

Publisher

Journal of Palliative Medicine

Date

2021

Subject

children; palliative care; complex care; disabilities; caregivers; parents

Description

Background: Children with severe neurological impairment (SNI) commonly receive care in the hospital setting necessitating frequent interactions with clinicians. Yet, parents report that clinicians often have a limited understanding of their child's unique needs and abilities which hinders their care. Objectives: This study aimed to understand the challenges and suggested approaches parents identified to seeing their child holistically. Design: Cross-sectional qualitative study. Setting/Subjects: Parents/legal guardians of children with SNI at a tertiary pediatric academic center in the United States completed 1:1 interviews between August 2019 and February 2020. Measurements: Qualitative researchers with expertise in care for children with SNI, palliative care, and bioethics used thematic content analysis to inductively analyze data for relevant themes. Results: Twenty-five parents/legal guardians of 23 children with SNI participated. Sixty-eight percent were mothers and 24% were fathers; and 68% were white. Thirty-two percent were from other racial and/or ethnic backgrounds. Children predominantly had congenital/chromosomal (n = 15, 65%) and central nervous system static (n = 6, 26%) SNI diagnoses. Four themes emerged regarding both challenges and approaches to understanding children with SNI holistically. These included uniqueness, interdependency, complexity, and universality. Parents felt that by eliciting and incorporating their perspective on these sometimes contrasting but inherently necessary aspects of their child's care, clinicians would understand their children more fully. Conclusion: By viewing the child through the prismed lens of parents, participants described how clinicians could transition from a monochromatic to a technicolor view of their child-including the inherent contrasting needs required for their comprehensive care.

Rights

Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).

Citation List Month

November 2021 List

Collection

Citation

Bogetz JF; Lewis H; Trowbridge A; Jonas D; Hauer J; Wilfond BS, “From Monochromatic to Technicolor: Parent Perspectives on Challenges and Approaches to Seeing Children with Severe Neurological Impairment Holistically,” Pediatric Palliative Care Library, accessed July 2, 2022, https://pedpalascnetlibrary.omeka.net/items/show/17714.

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