Talking About Future Disability: Qualitative Analysis of Family Meetings in Neonatal and Pediatric Intensive Care Units.

Abstract

To evaluate the language used to discuss a child's disability and understand themes related to its use. 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. 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. 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.