Understanding compassionate care from the patient perspective: Highlighting the experience of head and neck cancer care.

Objectives: To address the knowledge gap in the practice of compassionate healthcare by elucidating patient perspectives on compassion, empathy, and sympathy. Methods: Semi-structured telephone interviews were conducted at two time points with patients undergoing head and neck cancer treatment. Questions explored participants' understanding of compassion, sympathy, and empathy, as they relate to each other and to healthcare. Interviewers manually recorded responses. Qualitative exploratory methods were used to analyze data; inductive line-by-line coding was conducted to develop primary codes. Themes emerged through categorization of codes. Results: Ninety-five interviews conducted with 63 participants across two time points revealed four major themes - Compassion-vs-Empathy-vs-Sympathy, Coping Methods, Showing Care, and Nature of Interaction - encompassing seven categories, with a total of 24 codes. Codes were consistent across time points, except for two new codes, "positivity" and "personalized" emerging during follow-up interviews. Conclusions: Patient narrative from this study supported the concept that compassion is multidimensional and enabled several dimensions to be identified, highlighting the importance of patient perspectives in improving the provision of compassionate healthcare. Findings should be considered in future training and practice.

Using the Delphi Method to Elucidate Patient and Caregiver Experiences of Cancer Care.

Objective: Identify the most salient elements of the head and neck cancer (HNC) care experience described by patients and caregivers in focus group interviews. Methods: Three focus groups of patients and caregivers were facilitated by research assistants and clinicians. Open-ended guiding questions captured/elicited aspects of care that were appreciated, warranted improvement, or enhanced communication and information. A four-step Delphi process derived consensus among focus group facilitators (n = 5) regarding salient discussion points from focus group conversations. Results: Seven salient themes were identified: (1) information provision, (2) burden related to symptoms and treatment side effects, (3) importance of social support, (4) quality of care at both hospital and provider levels, (5) caring for the person, not just treating cancer, (6) social and emotional impact of HNC, and (7) stigma and insufficient information regarding human papillomavirus-related HNC. Conclusion: Participants reported varying needs and support preferences, a desire for individualized communication, and to feel cared for as both a person and a patient. Findings illuminate the intricate details underlying high-quality, compassionate, person-centered HNC cancer care.