ABSTRACT

Background

There is an increasing amount of research that investigates the needs and wishes of people with aphasia and their relatives with regards to improving the accessibility of communication with healthcare professionals (HCP). An important way to improve this is by training HCP to use supportive conversation techniques and tools.

Objectives

This study aimed to inform the development of such a training, by adding to previous findings in the literature regarding the experiences, needs and wishes of people with aphasia and their relatives. We were interested in their experiences with the accessibility of communication and support from HCP and how they believed this can be improved.

Methods

An exploratory qualitative research design was chosen. Data was collected through qualitative semi-structured interviews with 20 people with aphasia and 12 relatives. The time post stroke ranged from 3 months to 41 years.

Results

Four themes described the data. According to people with aphasia and relatives (1) information transfer in healthcare settings and (2) the use of supported conversation techniques by HCP are inadequate, (3) there is a lack of shared decision-making in healthcare settings, and (4) support, guidance, counseling and education is mainly targeted at the person with aphasia.

Conclusions

People with aphasia and relatives reported a variety of positive and negative experiences in all themes. Even though guidelines and interventions have been developed to improve healthcare for people with aphasia and their relatives, we found that people still encounter substantial challenges in access to- and provision of information, shared decision-making, support and communication with HCP. The findings in this study provide some important recommendations for improvement, including the improvement of transfer of information, shared decision-making and individual support for the relatives.

中文翻译：

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根据失语症患者及其亲属的说法，改善医疗中心的沟通和支持的方法：荷兰人的观点

摘要

背景

越来越多的研究调查失语症患者及其亲属在提高与医疗保健专业人员 (HCP) 沟通的可及性方面的需求和愿望。改善这一点的一个重要方法是培训 HCP 使用支持性对话技巧和工具。

目标

本研究旨在通过增加先前文献中关于失语症患者及其亲属的经历、需求和愿望的发现，为此类培训的发展提供信息。我们对他们在 HCP 的沟通和支持的可访问性方面的经验以及他们认为如何改进这一点很感兴趣。

方法

选择了探索性定性研究设计。通过对 20 名失语症患者和 12 名亲属的定性半结构化访谈收集数据。中风后的时间从 3 个月到 41 岁不等。

结果

四个主题描述了数据。根据失语症患者及其亲属的说法，(1) 医疗机构中的信息传递和 (2) HCP 使用支持的对话技术不充分，(3) 医疗机构缺乏共同决策，以及 (4)支持、指导、咨询和教育主要针对失语症患者。

结论

失语症患者及其亲属在所有主题中报告了各种积极和消极的经历。尽管已经制定了指南和干预措施来改善失语症患者及其亲属的医疗保健，但我们发现人们在获取和提供信息、共同决策、支持以及与 HCP 沟通方面仍然面临巨大挑战。本研究的结果提供了一些重要的改进建议，包括改进信息传递、共同决策和对亲属的个人支持。