The Clare Project and "What Matters Most?" to young people with advanced cancer

by Karen J. Wernli In the summer of 2014, my sister-in-law, a new mother, died of cancer after 11 years with her disease. Although doctors gave her the best care they could, as a health researcher focused in cancer care, I wanted to do better for people like Clare. Then, at a scientific conference that fall, I learned that others had the same desire. Representatives from the National Cancer Institute were asking for studies to improve care for adolescents and young adults, including at the end of life. On the plane home, I started working with my research ideas. I realized that to know what young people with advanced-stage cancer need, want, and value, we need to ask them directly. That’s what the Clare Project is doing. I was fortunate to get support from the Group Health Research Institute Development Fund for pilot work. My team and I started by interviewing a few young adults with end-stage cancer. I learned so much from them about their concerns and values. Now, my Clare Project team of Drs. Marlaine Gray and Evette Ludman and Tara Beatty and I are taking a new approach for the next phases of our work. A personal approach for a personal project Clinical studies usually recruit people through the health system, with waiting-room posters or physician referrals. Because our work asks intimate questions about end-of-life priorities, we wanted something more personal. Clare used social networking to keep in touch with friends and family, so we started a Facebook page and a ...
Source: Pallimed: A Hospice and Palliative Medicine Blog - Category: Palliative Care Tags: cancer pediatrics tweetchat twitter young adult Source Type: blogs