Prior Sarah, Miller Andrea, Campbell Steven, Linegar Karen, Peterson Gregory
School of Medicine, University of Tasmania, Burnie, Australia.
School of Health Sciences, University of Tasmania, Launceston, Australia.
J Particip Med. 2020 Feb 7;12(1):e12336. doi: 10.2196/12336.
Aphasia is an impairment of language, affecting the production or comprehension of speech and the ability to read or write. Aphasia is a frequent complication of stroke and is a major disability for patients and their families. The provision of services for stroke patients differs across health care providers and regions, and strategies directed at improving these services have benefited from the involvement of patients. However, patients with aphasia are often excluded from these co-design activities due to a diminished capacity to communicate verbally and a lack of health researcher experience in working with patients with aphasia.
The primary aim of this paper is to identify approaches appropriate for working with patients with aphasia in an interview situation and, more generally, determine the importance of including people with aphasia in health service improvement research. The secondary aim is to describe the experiences of researchers involved in interviewing patients with aphasia.
A total of 5 poststroke patients with aphasia participated in face-to-face interviews in their homes to gain insight into their in-hospital experience following their stroke. Interviews were audio-recorded, and thematic analysis was performed. The experiences of the researchers interviewing these patients were informally recorded postinterview, and themes were derived from these reflections.
The interview technique utilized in this study was unsuitable to gain rich, qualitative data from patients with aphasia. The experience of researchers performing these interviews suggests that preparation, emotion, and understanding were three of the main factors influencing their ability to gather useful experiential information from patients with aphasia. Patients with aphasia are valuable contributors to qualitative health services research, and researchers need to be flexible and adaptable in their methods of engagement.
Including patients with aphasia in health service redesign research requires the use of nontraditional interview techniques. Researchers intending to engage patients with aphasia must devise appropriate strategies and methods to maximize the contributions and valuable communications of these participants.
失语症是一种语言障碍，影响言语的产生或理解以及阅读或书写能力。失语症是中风的常见并发症，对患者及其家庭来说是一项主要残疾。针对中风患者提供的服务在不同的医疗服务提供者和地区存在差异，旨在改善这些服务的策略受益于患者的参与。然而，失语症患者往往因言语交流能力下降以及健康研究人员缺乏与失语症患者合作的经验而被排除在这些共同设计活动之外。
本文的主要目的是确定在访谈情境中与失语症患者合作的合适方法，并更广泛地确定将失语症患者纳入卫生服务改进研究的重要性。次要目的是描述参与访谈失语症患者的研究人员的经历。
共有5名中风后失语症患者在家中接受了面对面访谈，以深入了解他们中风后的住院经历。访谈进行了录音，并进行了主题分析。对这些患者进行访谈的研究人员的经历在访谈后进行了非正式记录，并从这些反思中得出主题。
本研究中使用的访谈技巧不适用于从失语症患者那里获取丰富的定性数据。进行这些访谈的研究人员的经历表明，准备、情感和理解是影响他们从失语症患者那里收集有用经验信息能力的三个主要因素。失语症患者是定性卫生服务研究的重要贡献者，研究人员在参与方法上需要灵活多变。
将失语症患者纳入卫生服务重新设计研究需要使用非传统的访谈技巧。打算与失语症患者合作的研究人员必须设计适当的策略和方法，以最大限度地发挥这些参与者的贡献和有价值的交流。
