Cancer Health Literacy Research Centre, Cancer Education, Princess Margaret Cancer Centre, Toronto, ON M5T 3M6, Canada.
The Institute for Education Research (TIER), University Health Network, Toronto, ON M5T 1V4, Canada.
Curr Oncol. 2023 Mar 29;30(4):3845-3858. doi: 10.3390/curroncol30040291.
The increasing demand for cancer services is projected to overwhelm the cancer care system, leading to a potential shortfall in human resource capacity. Informal caregivers (unpaid family/friend caregivers of cancer patients) provide a significant amount of care to patients and the cancer care system could not cope without them. The aim of this study was to analyze the needs of informal caregivers (CGs) through interviews with cancer patients and CGs, and to assess the content and utility of a comprehensive caregiver training course.
Cancer patients and CGs were recruited from an academic cancer centre to elicit their thoughts and perceptions of cancer CG education needs through a qualitative, phenomenological design using semi-structured interviews and a curriculum review activity.
Six patients and seven CGs were interviewed. Patients averaged 53.8 years of age and CGs averaged 53.1 years. Caregiver participants reported that they were unprepared for their caregiving role. Depending on the severity of the disease, CGs reported significant emotional strain. Most participants wanted more practical information, and all expressed the desire for greater social support for CGs. While there were differences in terms of desired modality (e.g., online, in-person), support for greater CG education was strong.
CGs experience a significant learning curve and receive little to no direct training or education to help them acquire the knowledge and skills they need to support a cancer patient. This is especially challenging for new CGs, for whom emotional and informational needs are particularly acute. Participants shared a great deal of endorsement for a comprehensive training course for new CGs. Given the multiple demands on their time, some participants suggested that consideration be made to establish synchronous classes. Participants held that having the course take place (online or in-person) at a specific time, on a specific date could help CGs prioritize their learning. Participants also endorsed the idea of "required" learning because even though CGs may recognize that a course could be beneficial, some may lack the motivation to participate unless it was "prescribed" to them by a healthcare provider.
预计癌症服务需求的增加将使癌症护理系统不堪重负，导致人力资源能力潜在短缺。非正式护理人员（癌症患者的无薪家庭/朋友护理人员）为患者提供了大量的护理，如果没有他们，癌症护理系统将无法应对。本研究的目的是通过对癌症患者和护理人员进行访谈，分析非正式护理人员（CGs）的需求，并评估综合护理人员培训课程的内容和实用性。
从一家学术癌症中心招募癌症患者和 CGs，通过使用半结构化访谈和课程审查活动的定性、现象学设计，引出他们对癌症 CG 教育需求的想法和看法。
对六名患者和七名 CG 进行了访谈。患者的平均年龄为 53.8 岁，CG 的平均年龄为 53.1 岁。护理人员参与者报告说，他们对自己的护理角色没有准备。根据疾病的严重程度，CG 报告说他们承受了巨大的情绪压力。大多数参与者希望获得更多实用信息，所有人都表示希望为 CG 提供更多的社会支持。尽管在所需模式（例如在线、面对面）方面存在差异，但对加强 CG 教育的支持非常强烈。
CG 经历了一个显著的学习曲线，几乎没有接受过直接的培训或教育，以帮助他们获得支持癌症患者所需的知识和技能。对于新 CG 来说，这尤其具有挑战性，因为他们的情感和信息需求特别迫切。参与者对新 CG 综合培训课程表示了极大的认可。考虑到他们时间的多重需求，一些参与者建议考虑建立同步课程。参与者认为课程在特定时间、特定日期以特定形式进行，可以帮助 CG 优先考虑他们的学习。参与者还认可“强制”学习的想法，因为即使 CG 可能认识到课程可能有益，但如果不是由医疗保健提供者“规定”他们参加，他们可能缺乏参加的动力。
