Gazing Back: An Autoethnography of Family-Centered Care at a Children’s Hospital

First Advisor

Harmony Newman

First Committee Member

Kyle Nelson

Document Type

Thesis

Date Created

5-2021

Department

College of Humanities and Social Sciences, Sociology, Sociology Student Work

Abstract

This autoethnography came about after my only daughter was diagnosed with childhood cancer just before the start of middle school. While navigating her first year of chemotherapy treatment, she was admitted for several extended hospital admissions that afforded me the opportunity of experience to peek behind the curtain of purported family-centered care at a children’s hospital. My research seeks to understand how the current medical model of family-centered care leaves the family out of the equation. Using my coded field-notes as a microcosm to infer broader generalizability, I uncover patterns of unfeeling bureaucratic norms, a loss of agency and power, and the inflexibility of imposing organizational constraints that work in amplified resonance to reveal an institution that is incompatible with delivering family-centered care, despite its sequela of family-centered messaging. Applying a trifocal theoretical framing of macro (Weber et al., 1948), meso (Foucault, 1973), and micro (Goffman, 1959) lenses, I bring into magnified focus evidence that hospital care in practice forgoes the best overall care possible for the patients and their families in deference to the larger institution, refracting light on the dehumanizing impact of this practice. The implications of my research are broadly applicable to patient satisfaction in the 21st century with the industrialization of bureaucracy not only in the medical world but perhaps beyond. Further research should be done with broader populations to overcome the limitations of my singular bias.

Abstract Format

html

Keywords

medical-bureaucracy; powerlessness; organizational constraints; family-centered care; patient-centered care; childhood cancer; leukemia; children's hospital; medical gaze

Language

English

Extent

86 pages

Comments

This thesis is under permanent embargo.

Rights Statement

Copyright is held by the author.

Digital Origin

Born digital

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