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Racially and Ethnically Marginalized Patients' Perspectives on Nurse-Led Serious Illness Conversations
Masami Tabata-Kelly1,2,3, Christina Sheu1,2, Amy L Bulger2,4
1Center for Surgery and Public Health, Brigham and Women's Hospital, Boston, Massachusetts, USA.
Background:
Although racial and ethnic disparities in serious illness conversations have been documented, the experiences of racially and ethnically marginalized patients in nurse-led conversations remain underexplored.
Aim:
To explore racially and ethnically marginalized patients' experiences of nurse-led serious illness conversations and their engagement in discussions about goals and future care.
Design:
A mixed-methods convergent study using surveys and semi-structured interviews.
Setting/Participants:
Racially and ethnically marginalized patients ≥18 years old from a single U.S. health care system.
Measurements:
The Advance Care Planning Engagement Survey, Serious Illness Conversation Patient Experience Survey, and semi-structured interviews.
Results:
Fifteen patients participated in the study. Participants felt confident engaging in advance care planning (mean: 4.35/5.00) but were less ready to act (mean: 3.40/5.00). Nearly half reported that nurse-led serious illness conversations increased hopefulness about their quality of life, closeness with the nurse, sense of control over medical decisions, and understanding of their future health. The mean "heard and understood" score was 3.00, indicating that nurse-led conversations moderately helped participants feel heard and understood. Integrated analysis showed that nurse-led serious illness conversations supported participants feel comfortable and confident engaging in discussions about their goals and future care. Nurse-led conversations also helped foster a better understanding of participants' future health. However, confidence did not translate into readiness in the context of multifaceted distress.
Discussion:
Nurse-led serious illness conversations facilitated greater confidence among racially and ethnically marginalized patients to discuss their goals and future care and fostered understanding of their future health; however, additional support is needed to address multifaceted distress affecting readiness.
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