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

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.

Information needs and research priorities in long‐term survivorship of breast cancer: Patients and health professionals' perspectives

“…Although Delphi studies might simultaneously include different types of stakeholders to answer a common research question, such as health professionals, researchers, caregivers, and patients (Barrington et al, 2021), we used separate groups of BC patients and health professionals to answer two different research questions, to avoid the frequent under-representation of patients in these combined groups (Barrington et al, 2021) and following the methodology of previous Delphi studies carried out (Torres-Castaño et al, 2021). To promote person-centred care, it is opportune to identify the disease-related information needs from the specific patients' perspectives and experiences (Ellis et al, 2022). However, identifying and prioritising specific BC research needs, to inform future research agendas, takes advances of the scientific or professional background in what has already been researched (Shaw et al, 2021).…”