Caregiver Perspectives on Racism and Bias in Navigating the Care of Children with Long-Term Ventilation via Tracheostomy

Objective: To explore caregiver experiences of racism and bias in navigating the care of children with long-term ventilation via a tracheostomy (LTV). Study design: Qualitative study with semistructured interviews of caregivers for children who initiated LTV in the previous 5 years at 4 geographically distinct academic medical centers. An interview guide was developed and deployed to include domains about the decision-making process, interactions with medical teams, transition to home, and the care the child received. Results: Thirty-one families with children from racially and ethnically minoritized groups who initiated LTV were interviewed. About half of families described experiences in which racism or another form of bias affected how providers from medical teams interacted with them and their children. Four themes emerged regarding the types of biases that caregivers experienced and described: (1) race and ethnicity; (2) language; (3) socioeconomic status; and (4) caregiver's bedside presence. Caregivers also highlighted suggestions regarding how to support families from racial and ethnic groups that have been economically and socially marginalized in health systems, which include (1) resources for knowledge-building and decision-making; (2) increased representation of families from similar racial and ethnic backgrounds; and (3) increased provider empathy and positive messaging. Conclusions: For families from racial and ethnic minoritized groups, we found that racism and other biases may compound the challenges associated with LTV. The potential for racism and other biases highlights the need for targeted resources to support better those families pursuing LTV.