Iseli Luzia M, Poppe Christopher, Wangmo Tenzin
Institute for Biomedical Ethics, University of Basel, Basel, Switzerland.
Clinic for Internal Medicine, University Hospital of Basel, Basel, Switzerland.
Palliat Support Care. 2024 Sep 9:1-7. doi: 10.1017/S1478951524001044.
Diagnosis of amyotrophic lateral sclerosis (ALS) takes more than 1year from detection of first symptoms. The paper seeks to understand the ALS diagnostic process and adjustment from the perspective of informal caregivers.
The data stems from an interview study with 9 current and 13 bereaved informal caregivers of people with ALS in Switzerland. The interviews were analyzed using thematic analysis.
We identified 3 key themes pertaining to ALS diagnosis. In the first theme, we present the close involvement of informal caregivers in the "diagnosis journey." Highlighted within this theme is the important role they play, which ultimately leads to diagnosis of ALS avoiding further delays. Second, we relay their perceptions on "diagnosis communication pitfalls" where they underlined empathy and planning from the part of medical professional, while communicating the terminal diagnosis of ALS. Participants' reactions and adjustments post-ALS diagnosis are described in "the aftermath of diagnosis." In this third theme, we highlight participants' shock and their need to rethink overall life plans and roles in their family.
Diagnosis communication that is clear, empathetic, and adjusted to the needs of the patients as well as their caregivers is critical. More work is needed to improve diagnosis communication for ALS patients. Receiving the diagnosis of ALS leads to complete changes in life of caregivers. It is therefore necessary that medical professionals provide adequate support that allows them to plan for their future.
从首次出现症状到诊断出肌萎缩侧索硬化症（ALS）需要一年多时间。本文旨在从非正式照护者的角度了解ALS的诊断过程及调整情况。
数据来源于对瑞士9名现任和13名已故ALS患者的非正式照护者的访谈研究。采用主题分析法对访谈进行分析。
我们确定了与ALS诊断相关的3个关键主题。在第一个主题中，我们展示了非正式照护者在“诊断之旅”中的密切参与。该主题强调了他们所发挥的重要作用，这最终使得ALS得以诊断，避免了进一步延误。其次，我们转述了他们对“诊断沟通陷阱”的看法，他们强调在传达ALS终末期诊断时，医疗专业人员应具备同理心并做好规划。“诊断之后”描述了参与者在ALS诊断后的反应和调整。在第三个主题中，我们强调了参与者的震惊以及他们需要重新思考整体生活计划和在家庭中的角色。
清晰、有同理心且根据患者及其照护者需求进行调整的诊断沟通至关重要。需要开展更多工作来改善ALS患者的诊断沟通。得知ALS诊断结果会使照护者的生活彻底改变。因此，医疗专业人员有必要提供足够的支持，使他们能够规划未来。
