"I Got My Trophy": The Story of Implementing a Neuro-Oncology Exercise Program from the Patient and Caregiver Lens-A Qualitative Study.

Abstract

The purpose of this study was to gather patient and caregiver perspectives of adult neuro-oncology patients participating in a 12-week exercise program (i.e., the Alberta Cancer Exercise-Neuro-Oncology; ACE-Neuro study). Patients and their caregivers were invited to participate in semi-structured interviews across study delivery. A qualitative photo elicitation methodology within a patient-oriented research approach was used. Interpretive description and a constructivist philosophy guided the investigation, analysis, and dissemination of findings. A patient partner was included as a member of the research team. N = 51 patients completed the ACE-Neuro study, of which 28 patients and nine caregivers participated in interviews (n = 37). Working with the patient partner, five themes were created and are presented as a story of neuro-oncology patients on their journey to accessing and participating in ACE-Neuro: (1) The Exposition: I Have Cancer…Now What?; (2) The Rising Action: Trials and Triumphs of Participation; (3) The Pivotal Moment: It's More Than Exercise; (4) The Resolution: Tailored Not Templated…The Ideal Program for Me; and (5) The Epilogue: Key Factors for Sustained Delivery. The findings from this work address the lack of qualitative exploration for understanding the neuro-oncology exercise experience and will inform the sustainable implementation of programming to meet patients' needs.