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Talking About Future Disability: Qualitative Analysis of Family Meetings in Neonatal and Pediatric Intensive Care
Ryan F Sutyla1, Katelyn A Young2, Saisha Dhar3
1Department of Pediatrics, Duke University Medical Center, Durham, NC.
Insights
Clinicians and families use varied language, including euphemisms and problematic terms, when discussing pediatric disability. Understanding these communication patterns is key for effective care in neonatal and pediatric intensive care units.
Area of Science:
- Pediatric critical care communication
- Disability studies
- Medical sociology
Background:
- Effective communication regarding pediatric disability is crucial in neonatal and pediatric intensive care units (NICUs/PICUs).
- Existing research lacks a deep understanding of the specific language used by families and clinicians when discussing childhood disability in these settings.
Purpose of the Study:
- To evaluate the specific language employed when discussing a child's disability.
- To identify and understand recurring themes within this disability-related discourse.
Main Methods:
- Descriptive qualitative study involving secondary analysis of recorded family meetings in NICUs/PICUs.
- Focus on meetings concerning infants (≤1 year) discussing neurologic prognosis or goals of care.
- Characterization of language used to describe current and future disability.
Main Results:
- Disability language was present in 66% (45/68) of analyzed family meetings.
- Language included explicit naming, sharing characteristics, and problematic phrasing.
- Identified themes: euphemisms, invoking the 'healthy other,' quality of life intersection, medical model contextualization, and family impact.
Conclusions:
- The discourse surrounding pediatric disability in NICUs/PICUs offers critical insights into how disability is perceived and managed.
- Findings highlight the need to integrate disability-related topics into medical education.
- Recommendations include developing training tools for clinicians to improve communication about pediatric disability.
Objective:
To evaluate the language used to discuss a child's disability and understand themes related to its use.
Study Design:
This descriptive qualitative study was embedded in a qualitative study examining family meeting dynamics and decision-making in pediatric and neonatal intensive care units. Family meetings involved an infant 1 year old or younger and were held to discuss neurologic prognosis or goals of care. We performed a secondary, post hoc analysis of family meeting content to characterize language used to discuss current and/or future disability.
Results:
A total of 68 family meetings were screened; 45 (66%) included disability language. Disability was referenced by explicitly naming disability, sharing information about disability characteristics, and using problematic language. We identified 5 themes that further characterized disability language: (1) euphemisms for disability, (2) invoking the healthy other, (3) the intersection between quality of life and disability, (4) using the medical model to contextualize disability, and (5) disability's impact on the child's family.
Conclusions:
The language used by family members and clinicians to discuss and contextualize disability provides important insight into how disability is addressed in pediatric and neonatal intensive care units. These findings emphasize the importance of including topics related to disability in medical education and can inform further work to develop training tools to aid pediatric clinicians in discussing disability effectively.
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