Huvudbild för Vitalis 2026

What Matters Most: BRCA Carriers’ Views on Person-Centred Care [PCC027]

Onsdag 6 maj 2026 14:45 - 15:00 G4

Rapportör: Leonie Emilia Witte

Spår: Illness Communication

Background: Women diagnosed with a BRCA gene mutation face increased lifetime risks of breast and ovarian cancer, prompting complex decision-making around surveillance, preventive surgery, and fertility. While care trajectories are medically individualized, many women report their lived experiences are marginalized - particularly due to the absence of a cancer diagnosis. Yet, living with inherited cancer risk brings ongoing psychosocial challenges, highlighting the need for person-centred care (PCC) that addresses meaning, identity, and long-term decision-making beyond clinical management. Aim: To identify which aspects of PCC women with BRCA mutations prioritize in their care, and how these perspectives vary within the population. Methods: We applied Q-methodology with 23 Dutch BRCA carriers; a participatory method increasingly used for healthcare priority setting. Participants ranked statements based on the Picker Institute’s PCC dimensions according to personal importance and elaborated during interviews. Factor analysis identified shared perspectives, complemented by qualitative interpretation. Findings: Three distinct perspectives on PCC emerged, each emphasizing different dimensions. (1) ‘The Informed Journey’ prioritized clear information, education, and communication to support understanding and decision-making. (2) ‘Care Rooted in Compassion’ centred on emotional support, empathy, and respect, fostering trust and psychological safety. (3) ‘Acknowledging Intimacy and Loss’ highlighted attention to physical needs, addressing embodied impacts of genetic risk. Across perspectives, effective treatment by trusted professionals was a shared priority. Notably, priorities were shaped less by clinical history than by personal values and social context. Discussion: This study reveals the heterogenous care experiences of BRCA carriers and pinpoints priority areas for advancing PCC in women’s health under conditions of long-term risk. Showing how gendered experiences of uncertainty and vulnerability shape care preferences, we outline how PCC can be adapted to the realities of women navigating complex choices over time. Our findings offer practical strategies for integrating female-specific priorities into care, enabling responsive support in risk contexts.
Språk

English

Konferens

GCPCC

GCPCC Seminarietyp

Orals

GCPCC Kod

PCC027

Föreläsare

Leonie Emilia Witte Rapportör