"I need to find ways, and I've not yet been successful": Exploring adaptive challenges and adaptive leadership as experienced by patients with gastrointestinal malignancy.

Background: Despite the advent of shared-decision making, person-centered care, and early palliative care, many oncology patients and oncologists may face challenges that are not easily solved within these existing paradigms. Adaptive healthcare has been proposed as a framework with which to understand complex problems and guide physician actions. However, it is unknown to what extent patients would endorse this framework as applicable to their own experience. Method: Semi-structured interviews were conducted with patients selected through purposive sampling. Interviews were analyzed both deductively using Heifetz' adaptive leadership framework, and inductively for new insights in a qualitative descriptive approach. Results: Twelve interviews were conducted. Despite good conceptual understanding of adaptive challenges, some participants struggled to analyze own experiences using this lens. Nonetheless, numerous adaptive challenges and responses to them were identified. Innovation: Divergent from the original adaptive leadership framework, some patients deliberately chose not to adapt in some domains as a means of maintaining autonomy in the midst of upheaval. Our results suggest that consideration of patient autonomy be integrated into the adaptive healthcare if it is to be applied to oncology. Conclusions: Patients with advanced colon or pancreatic cancer reported facing numerous adaptive challenges, confirming the applicability of the conceptual framework to the patient experience. The highly individual nature of the adaptive challenges faced, and the individual variability in responses to challenges, calls for oncologists to carefully explore challenges faced by their patients, as well as patients' preferred way to address them, in order to optimize and individualize adaptive.