Ableism After Critical Illness: A Qualitative Translation of Key Concepts to the Post-ICU Context.

Abstract

Objectives: Ableism-discrimination and social prejudice against people with disabilities-defines people by their disability and assumes that disabled people require fixing. We sought to characterize ableism after critical illness and to describe its relationship with care delivery.

Design: A secondary analysis of semi-structured individual interviews (n = 42) and ten group interviews (n = 68 participants) using modified grounded theory. We identified categories of ableism informed by existing disability studies literature and used patterns in the analysis to describe overarching themes.

Setting: A large healthcare system in western Pennsylvania.

Participants: Critical illness survivors, family members, clinicians, and administrators.

Interventions: None.

Measurements and main results: Two overarching themes emerged: ableism presents multifaceted barriers to participation in meaningful activities after critical illness, and it is endemic. We observed examples of ableism in all interviews. The quotes characterizing ableism fell into six categories: 1) infantilization and patronization; 2) disability leading to inability; 3) denial of disability experience; 4) invasion of privacy and denial of meaningful relationships; 5) being ignored and excluded; and 6) pushing care providers beyond their perceived capacity. When participants expressed ableism toward others, it was typically matter-of-fact; however, when participants described experiencing or witnessing ableism, they expressed feelings ranging from anxiety to outrage. Participants explicitly and implicitly connected expressions of ableism to broader policies and practices, providing evidence that ableism is endemic to this healthcare system.

Conclusions: Ableism presents multifaceted barriers to participation after critical illness, undermining resilience and wellbeing. We hypothesize that anti-ableist interventions could reduce disability-related barriers to resilience to optimize recovery after critical illness.