Providing Coordinated Cancer Care - A Qualitative Study of Norwegian Cancer Coordinators' Experiences of Their Role.
Lie, Nataskja-Elena Kersting MSc; Hauken, May Aasebø PhD; Solvang, Per Koren PhD
"For me as a researcher, investigating how cancer coordinator roles evolved in the different municipalities was a highly interesting and thought-provoking process. Travelling the whole country to collect data, what struck me instantly was the great variation in how the coordinator role had evolved in Norwegian municipalities. Each cancer coordinator worked in his or her unique way, from home visits and bedside support to administrative tasks and system work – diverse accounts that fueled my interest in grasping what they all might have in common. During my research, I learned that the stories my participants shared with me were not as distinct as they seemed at first. There were stories about difficulties in establishing a pioneer position in Norwegian primary care, and stories about hardships of aligning multiple disconnected services in cancer care and managing local resource shortages. But even more so, there were stories about cancer coordinators' true dedication to the patients and their families. Most of my participants would go out of their way to help patients navigate the system and provide them with the support they needed, despite the challenges they described in enacting their tasks. Clearly, the cancer coordinators in the present study provided an invaluable resource to the patients, not merely in helping them navigate the treatment course, but in offering them time; time for being seen and listened to, and time for discussing matters that are important in cancer patients' daily life.
These stories made me think about some reading I did some years ago:
In 1976, Eric Castell appealed to professionals in health care and to society for treating the patients, not their disease. Around the same time, George Engel called for a new paradigm in clinical care - a paradigm that would attend to biological, psychological, and social dimensions of illness. Both of them shared the believe that the health care system needs to attend to patients' experience of their situation as well as to their biomedical data in order to understand and respond adequately to their needs and facilitate health and healing.
In 2017, where an increasing number of cancer patients are required to manage a day-to-day life with cancer, this appeal by Castell and Engel is far from outdated. Cancer coordinators may be the 21st century's response to the calls made decades ago and might serve to overcome the Cartesian dualism in cancer care: in meeting individual support needs, they can help secure and empower patients to manage their day-to-day life outside the health care system where they often have little other support to rely on.
The stories told by cancer coordinators are stories about an initiative with great potential to improve cancer care and meet patients' needs. However, they also delineated the necessity for cancer coordinators to receive proper premises and support for enacting their role and work tasks. Without a doubt, research will be of high importance to assess the needs and prerequisites to enable the cancer coordinators' role to reach its full potential. The first step seemed to be a clarification concerning cancer coordinators' work and to disseminate information about their valuable and important role in cancer care. I hope and believe that our article may contribute to this clarification. On behalf of all authors, I can say that we are very proud that the article has been published in Cancer Nursing and will reach international clinicians and researchers who will have an impact on the provision of cancer care in the upcoming decades."
-- Ms. Nataskja-Elena Kersting Lie on her paper "Providing Coordinated Cancer Care - A Qualitative Study of Norwegian Cancer Coordinators' Experiences of Their Role," published ahead-of-print on CANCER NURSING's Web site. The full article may be viewed with a subscription.