Patient Preference and Adherence (Aug 2016)
“My cancer is not my deepest concern”: life course disruption influencing patient pathways and health care needs among persons living with colorectal cancer
Abstract
Anita Salamonsen,1 Mona A Kiil,2 Agnete Egilsdatter Kristoffersen,1 Trine Stub,1 Gro R Berntsen1,3 1National Research Center in Complementary and Alternative Medicine, Department of Community Medicine, UiT the Arctic University of Norway, Tromsø, Norway; 2Department of Clinical Medicine, UiT the Arctic University of Norway, Tromsø, Norway; 3Norwegian Center for eHealth Research, University Hospital of Northern Norway, Tromsø, Norway Background: The concept of “patient pathways” in cancer care is most commonly understood as clinical pathways, operationalized as standardized packages of health care based on guidelines for the condition in question. In this understanding, patient pathways do not address multimorbidity or patient experiences and preferences. This study explored patient pathways understood as the individual and cultural life course, which includes both life and health events. The overall aim was to contribute to supportive and targeted cancer care. Materials and methods: Nine Norwegian patients recently diagnosed with rectal cancer Tumor-Node-Metastasis stage I–III participated in qualitative interviews, five times over 1 year. Five patients later participated in a workshop where they made illustrations of and discussed patient pathways. Results: Patient pathways including both health and life events were illustrated and described as complex and circular. Stress, anxiety, and depression caused by life events had significant disruptive effects and influenced patient-defined health care needs. The participants experienced the Norwegian public health service as focused on hospital-based standardized cancer care. They expressed unmet health care needs in terms of emotional and practical support in their everyday life with cancer, and some turned to complementary and alternative medicine. Conclusion: This study suggests that acknowledging life course disruption before cancer diagnosis may have significant relevance for understanding complex patient pathways and individual health care needs. Approaching patient pathways as individual and socially constructed may contribute important knowledge to support targeted cancer care. Keywords: biographical disruption, colorectal cancer, life course disruption, Norway, patient-centeredness, patient pathways, person-centered care, supportive cancer care, unmet health care needs, complementary and alternative medicine
