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

Janet Ellis; Miriam von Mücke Similon; Melissa B Korman; Sophia den Otter-Moore; Alva Murray; Kevin Higgins; Danny Enepekides; Marlene Jacobson

doi:10.1177/23743735221092633

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

J Patient Exp. 2022 Apr 13:9:23743735221092633. doi: 10.1177/23743735221092633. eCollection 2022.

Authors

Janet Ellis^{1

2

3}, Miriam von Mücke Similon⁴, Melissa B Korman^{2

3}, Sophia den Otter-Moore², Alva Murray¹, Kevin Higgins^{1

3}, Danny Enepekides^{1

3}, Marlene Jacobson^{1

3}

Affiliations

¹ Sunnybrook Health Sciences Centre, Toronto, Ontario, Canada.
² Sunnybrook Research Institute, Toronto, Ontario, Canada.
³ University of Toronto, Toronto, Ontario, Canada.
⁴ Tel Aviv University, Tel Aviv, Israel.

Abstract

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.

Keywords: clinician–patient relationship; communication; empathy; interprofessional education; patient feedback; patient perspectives/narratives; patient/relationship-centered skills; qualitative methods.