“When I’m translating, I’m a daughter as well”: Perspectives of caregivers supporting patients with limited language proficiency.

Abstract

12096 Background: Family caregivers of people with advanced cancer provide essential support but often experience significant emotional distress. Caring for patients with limited language proficiency (LLP) introduces additional, distinct challenges. Patients with advanced cancer and LLP experience barriers to access and quality of care and advance care planning, resulting in increased reliance on family caregivers even when professional language services are available. This study explored the experiences and challenges of caregivers supporting advanced cancer patients with LLP to inform future interventions aimed at improving patient and caregiver outcomes. Methods: Caregivers supporting patients with advanced cancer and limited English proficiency treated at the Princess Margaret Cancer Centre (Toronto, Canada) were recruited via clinician referral and study flyers. Participants completed semi-structured interviews or focus groups exploring healthcare navigation, interpreter use, support needs, and recommendations for service improvement for patients with LLP. Transcripts were analyzed iteratively using practical thematic analysis. Results: Ten caregivers (ages 34–63; 6 female, 4 male; 2 spouses, 8 adult children; 5 supporting Chinese-speaking patients) participated. Participants acted as informal interpreters and mediators between patients and providers, a form of ‘language brokering’ that added substantial emotional and cognitive burden. Their experiences are subsumed under 4 interrelated themes: 1) Protective buffering and information gatekeeping: caregivers often filtered or withheld prognosis and end-of-life information to protect patients’ emotional well-being or align with cultural values; 2) Interpreter use representing both relief and loss of control: professional interpretation reduced linguistic burden but created new concerns regarding privacy, cultural sensitivity, and control over sensitive discussions; 3) Constant vigilance: caregivers felt constant pressure to monitor and understand patients’ symptoms and preferences, communicate them to providers, and support patient understanding and reassurance; and 4) Invisibility of caregiver needs: caregivers rarely recognized or prioritized their own needs, framing language brokering and caregiving as an expected familial or cultural duty. Conclusions: Family caregivers supporting patients with advanced cancer and LLP perform substantial emotional and cognitive labor that remains largely unrecognized in clinical practice. Interventions such as consistent and proactive access to professional interpreters and multilingual educational resources delivered across multiple modalities may support both patients and caregivers. These findings highlight an under-recognized but critical dimension of equitable, patient-centered oncology care.