[Transgressions and concessions of care: resistance practices in long-term pediatric hospitalizations]
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Published on: January 29, 2016
Anita Silva Paez1, Roberta Falcão Tanabe1, Elisa Maria de Brito Gomes1
1Instituto Nacional de Saúde da Mulher, da Criança e do Adolescente Fernandes Figueira, Fundação Oswaldo Cruz, Rio de Janeiro, Brasil.
Insights
Children with complex chronic conditions often face prolonged hospitalizations, limiting childhood experiences. This study explores how healthcare workers’ narratives reveal flexible hospital rules and resistance mechanisms that humanize care.
Area of Science:
- Pediatric healthcare
- Medical sociology
- Childhood chronic illness
Context:
- Long-term hospitalization for pediatric patients with complex chronic health conditions restricts typical childhood experiences.
- Many children live their entire lives in hospitals, never experiencing home environments.
- This study examines the care experiences of children and adolescents in a public pediatric hospital specializing in complex clinical profiles.
Purpose:
- To investigate the care experiences of children and adolescents with complex chronic health conditions through narrative inquiry.
- To analyze how hospital staff narratives reveal affective dimensions of care and challenge established norms.
- To explore the role of "transgressions and concessions" in improving the hospital environment for young patients.
Summary:
- Healthcare workers shared impactful stories, highlighting the emotional aspects of care and pushing against rigid hospital rules.
- The study identified instances of rule flexibility, termed "transgressions and concessions," aimed at improving patient well-being.
- Analysis focused on micro-relationships and the culture of care, revealing resistance mechanisms against dehumanizing hospital environments.
Impact:
- Reveals how staff narratives can drive positive changes in hospital culture and patient care.
- Demonstrates the importance of flexible policies in pediatric settings for children with chronic illnesses.
- Highlights the resilience of healthcare professionals in advocating for more humane and personalized care for hospitalized children.
Abstract:
Long-term hospitalizations of children and adolescents with complex chronic health conditions imply many restrictions to common childhood experiences. Many of them are born, grow up, and even die in the hospital without ever having known their homes. The care experience of this group was triggered by a narrative investigation. Workers from a public pediatric hospital dedicated to the care of complex clinical profiles were invited to tell stories that marked their memory. The evocation of the affective dimension of care pointed to the tensioning of the established normative limits. Hospital rules were made more flexible to benefit children and adolescents. These situations, which are called transgressions and concessions in this study, were analyzed to discuss important aspects of the micro-relationships and culture of care. Resistance mechanisms stand out in an effort to overcome or repair an environment often considered dehumanizing.
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