(P161) FROM THE HEART: CANADIAN WOMENS LIVED EXPERIENCES OF HEART FAILURE

Background: Women with heart failure (HF) are under-served, under-researched, under-diagnosed and experience poorer outcomes versus men. Listening to women talk about their experiences of HF and challenges in navigating the healthcare system, can help others in their situation and can inform service improvement. This project will produce an online resource, in collaboration with patients and clinicians, sharing women’s narratives with advice for others and for policy and practice improvement.

METHODS AND RESULTS: Using a qualitative descriptive approach, we interviewed women living with HF from 7 provinces (BC, ON, QC. NS, MB, NL, AB). Interviews were conducted virtually in English or French using video and/or audio recording, and with open narrative and semi-structured questions. Transcribed interviews were analyzed to identify topics of importance to women living with HF. Guided by an Expert Advisory Panel (including patients, clinicians and scientists), we will release a public-facing web module, featuring video/audio clips and trusted resources on topics important to women living with HF. A two-step consent process was adopted for public sharing of results.
30 Canadian women shared their stories of living with HF; some were born with cardiac issues, while others developed HF secondary to other illnesses (e.g. cancer, heart attack, stroke). The diagnosis of HF is difficult – women may not be told or realize the meaning or impact of the diagnosis. Living with HF can impact daily life, relationships, work, finances, identity and outlook on life. Women are required to learn and make decisions about complex interventions, medications, devices and surgeries, while navigating a system that limits access, and makes them feel ignored for being a woman. They learn to cope with HF by self-managing diet, fluid intake, monitoring activity & symptoms and by building supportive networks and advocating for themselves and each other.

Conclusion: No such resource featuring the personal narratives of people with lived experience of HF currently exists in Canada or elsewhere and this will contribute information and support for this underserved group. The results will add to existing collections of Canadian Health Experiences Research program on www.healthexperiences.ca