Department of Medicine, University of Washington, Seattle, Washington, USA.
Olson Zaltman Associates, Pittsburgh, Pennsylvania, USA.
J Palliat Med. 2023 Jun;26(6):751-756. doi: 10.1089/jpm.2023.0009. Epub 2023 May 2.
Many patients who could benefit from Palliative Care do not receive services because of lack of awareness or misconceptions. This high level of public unfamiliarity combined with inaccurate beliefs equating Palliative Care with dying calls for public messaging designed to increase public familiarity and correct misconceptions. A barrier to widespread public messaging, however, is the scarcity of messages developed with empirical research in public perceptions of the lived experience of receiving palliative care. In this report, we describe qualitative research aimed at identifying the "deep metaphors" associated with palliative care, to provide an empirical foundation for further creative work. We interviewed 8 patients receiving palliative care and 8 caregivers using a qualitative method, Zaltman Metaphor Elicitation Technique, that is specially designed to reveal unconscious metaphors and socially shared associations that participants held about experiencing palliative care. Study participants likened the onset of serious illness as a massive disruption resulting in stunning losses with far-reaching consequences. What serious illness "took away" from them was a sense of certainty about where their lives were going, and these participants described experiencing (1) shame and embarrassment about what was happening to them; (2) a sense that no one was listening to them; (3) feeling lost and uncertain about what to do, feeling stuck; and (4) losing parts of their identity to illness. What they felt in need of, to counter what had been taken away, was (1) validation for what they were going through; (2) agency to determine their own quality of life and have input into their care; (3) guidance to access a network of resources; and (4) regeneration of their self-worth, resulting in a new version of their identity. This research provides guidance for message developers on frames, language, and visuals for future campaigns designed to create public interest in palliative care.
许多本可以从姑息治疗中受益的患者没有得到服务，这是因为缺乏认识或存在误解。公众对此知之甚少，而且存在不准确的观念，将姑息治疗等同于死亡，因此需要开展宣传活动，以提高公众的熟悉程度并纠正误解。然而，广泛开展公众宣传的一个障碍是，缺乏基于公众对姑息治疗体验的实际感知的实证研究开发的信息。在本报告中，我们描述了旨在确定与姑息治疗相关的“深层隐喻”的定性研究，为进一步的创意工作提供了实证基础。我们使用专门设计的定性方法——扎尔坦隐喻诱发技术（Zaltman Metaphor Elicitation Technique）对 8 名接受姑息治疗的患者和 8 名护理人员进行了采访，该方法旨在揭示参与者对体验姑息治疗的无意识隐喻和社会共享关联。研究参与者将严重疾病的发作比作是一场巨大的破坏，导致惊人的损失和深远的后果。他们认为，严重疾病“夺走”了他们对生活走向的确定性，并且这些参与者描述了以下感受：（1）对正在发生的事情感到羞耻和尴尬；（2）感到没有人倾听他们的声音；（3）对该做什么感到迷失和不确定，感到被困住；（4）因疾病而失去了自己的一部分身份。为了应对所失去的一切，他们需要（1）对他们正在经历的事情给予认可；（2）确定自己的生活质量并对自己的护理有发言权的权力；（3）获得资源网络的指导；（4）恢复自己的自尊心，从而形成新的自我认同。这项研究为信息开发者提供了有关框架、语言和视觉效果的指导，以设计未来旨在引起公众对姑息治疗兴趣的活动。
