Ellis Janet, von Mücke Similon Miriam, Korman Melissa B, den Otter-Moore Sophia, Murray Alva, Higgins Kevin, Enepekides Danny, Jacobson Marlene
Sunnybrook Health Sciences Centre, Toronto, Ontario, Canada.
Sunnybrook Research Institute, Toronto, Ontario, Canada.
J Patient Exp. 2022 Apr 13;9:23743735221092633. doi: 10.1177/23743735221092633. eCollection 2022.
Identify the most salient elements of the head and neck cancer (HNC) care experience described by patients and caregivers in focus group interviews. 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. 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. 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.
确定在焦点小组访谈中患者和护理人员所描述的头颈癌（HNC）护理体验的最显著要素。研究助理和临床医生组织了三组由患者和护理人员参加的焦点小组。开放式引导性问题获取/引出了护理中受到赞赏、需要改进或加强沟通与信息交流的方面。一个四步德尔菲过程使焦点小组主持人（n = 5）就焦点小组讨论中的突出讨论点达成了共识。确定了七个突出主题：（1）信息提供，（2）与症状和治疗副作用相关的负担，（3）社会支持的重要性，（4）医院和医护人员层面的护理质量，（5）关心患者本人，而不仅仅是治疗癌症，（6）头颈癌的社会和情感影响，以及（7）与人乳头瘤病毒相关的头颈癌的耻辱感和信息不足。参与者报告了不同的需求和支持偏好，希望得到个性化沟通，并希望作为一个人和患者都能感受到关怀。研究结果揭示了高质量、富有同情心、以患者为中心的头颈癌护理背后的复杂细节。
