Patient experiences through head and neck cancer: Information delivery combatting psychological distress

As part of a larger study investigating the utility of electronic decision support tools for patients with head and neck cancer (HNC), this article describes the patient experience of receiving cancer treatment in British Columbia, Canada. It aims to give voice to the patient experience and recommend a model of psychological adjustment for clinicians and clinical service management to consider to refine patient centric care pathways for HNC. Based in phenomenology, semi-structured interviews were conducted with 12 survivors of HNC, audio-video recorded, and thematically analyzed. Three themes were identified: (1) patients have high, though varying information needs; (2) an emotional experience; and (3) coping, strength, and resiliency. These themes arose from six concepts: (1) information needs; (2) fear of the unknown; (3) desire for personalized information; (4) varying degrees of information needs; (5) fear as a motivator versus stressor; and (6) high information needs on life after treatment. Conclusions: The patient experience must be considered through the full care trajectory and into survivorship to provide the right information to the correct patient at the optimal time. Patient journey mapping may be a novel approach to exploring the temporal relationship between information needs and the patient experience along the cancer continuum to uncover opportune moments, from the patient perspective, for knowledge and supportive care intervention. The model of psychological adjustment by Calver et al. (2019) can be considered to inform the delivery of cancer care information in a method recognizing the patient as the ultimate knowledge holder.