Experiences and Needs of people living with Prolonged Incurable Cancer
Experiences and Needs of people living with Prolonged Incurable Cancer is a consortium project with public and private partnership. This study aimed to explore the experiences and needs of people living with incurable cancer for more than 1 year in relation to their relatives, healthcare professionals and employers.
Every year, more than 38,000 people in the Netherlands are diagnosed with incurable cancer. Advances in the treatment of cancer have extended the lives of some people with incurable cancer. While there is gratitude for the increased life expectancy, there are many difficulties associated with living with incurable cancer. Although there is extensive literature on cancer survivorship and end-of-life care, this ‘in-between’ group remains under-researched and poorly defined in clinical guidelines.
Achieved goals: We succeeded in obtaining knowledge and insights from and with people with prolonged incurable cancer about their wishes, experiences and needs. We conducted 25 individual face-to-face interviews, a focus group with people with prolonged incurable cancer and 6 individual interviews with employers. This provided us with broad insights from different perspectives about the experiences with and the challenges of living long(er) with incurable cancer.
People living with prolonged incurable cancer experience major disruptions to their well-being and face unique psychosocial challenges. They seek confirmation and understanding and express a need for healthcare systems to better address their ongoing support needs in facing a future filled with uncertainty. We disseminated these insights in different ways to online platforms for people with prolonged incurable cancer, their relatives, healthcare professionals, employers. Two scientific papers are written and submitted. A chapter in a book about Self-management for nurses has been provided. A video has been made on the most important experiences of living with incurable cancer, which is distributed to the general public. Animations about work and employees with prolonged incurable cancer are conducted for employers. Various training courses and (scientific and public) presentations have been provided, together with experts by experience.
