Abstract：
BACKGROUND: People who have communication difficulties may benefit from using augmentative and alternative communication (AAC). Understanding and measuring outcomes from the use of AAC is an important part of evaluating the impact of devices and services. Outcome measurement needs to reflect the changing nature of the impact of using AAC on an individual\'s ability to participate in activities of daily life. There is a limited understanding of the concepts that should inform the evaluation of outcomes from AAC device provision, nor how people\'s expectations from AAC may change over time.
OBJECTIVE: To inform the development of a patient-reported outcome measure for AAC by understanding more about people\'s expectations from AAC and how these change over time.
METHODS: A longitudinal qualitative research study was designed and carried out with seven participants over a period of 2 years. Participants were recruited from a regional specialist assessment service for AAC in the south-west of the UK. Four semi-structured interviews were carried out: (1) before assessment for AAC, (2) after assessment, (3) directly after provision of an AAC device and (4) between 6 and 12 months after provision. An original analytic method was used in this study that built on the principles of longitudinal interpretative phenomenology analysis, applied with a dialogic theoretical lens. This approach enabled the inclusion of a range of multimodal and embodied data collected to this study and allowed the research team to draw out salient themes across the cohort group while attending to the influence of time and context on experience.
RESULTS: The results confirm and extend the three core concepts that were used to guide analysis: changes; contexts; future possibilities. The contextual and temporal influences on outcomes attainable from AAC for this cohort were also identified and illustrated through cross-case comparison. Deeper, analytic, and conceptual engagement with theory, which was then applied to analysis of the data, provided methodological rigour in the study. The results enhance our understanding of people\'s hopes and expectations from AAC and how these change over time.
CONCLUSIONS: This qualitative longitudinal research study provides new insights into the journeys of people who experience communication disability, and the shifting nature of their sense of identity as they engage with, and learn from using, AAC. The study is significant as it attends to the dynamic nature of experience and how contextual and experiential factors influence people\'s hopes and expectations from AAC. The paper presents an original application of longitudinal qualitative research methodology with people who use AAC which can be further applied and tested in the field of communication disability research.
CONCLUSIONS: What is already known on this subject We did not know the impact that time has on the concepts that have been identified to represent important outcomes from AAC. The existing concepts used to define outcomes from AAC were not adequately conceptualized to develop a patient-reported outcome measure. This study sought to extend our knowledge about outcomes from AAC. What this paper adds to the existing knowledge This study adds to the methodological toolkit available for qualitative inquiry in the field of communication disability research by presenting a longitudinal qualitative research methodology. It adds depth to our understanding of the concepts that underpin outcomes from AAC and highlights the dynamic nature of contexts and how this influences desired outcomes. What are the potential or actual clinical implications of this work? This longitudinal qualitative research study provides a broader perspective on the experience of getting AAC. It will enable clinicians to better navigate the contextual and transitionary factors that influence people\'s experience of acquiring AAC devices. The enhanced concepts described will also support clinical conversations that consider the wider facets of communication and what AAC can add to existing communicative tool kits beyond getting a message across.
OBJECTIVE: To inform the development of a patient-reported outcome measure for AAC by understanding more about people\'s expectations from AAC and how these change over time.
METHODS: A longitudinal qualitative research study was designed and carried out with seven participants over a period of 2 years. Participants were recruited from a regional specialist assessment service for AAC in the south-west of the UK. Four semi-structured interviews were carried out: (1) before assessment for AAC, (2) after assessment, (3) directly after provision of an AAC device and (4) between 6 and 12 months after provision. An original analytic method was used in this study that built on the principles of longitudinal interpretative phenomenology analysis, applied with a dialogic theoretical lens. This approach enabled the inclusion of a range of multimodal and embodied data collected to this study and allowed the research team to draw out salient themes across the cohort group while attending to the influence of time and context on experience.
RESULTS: The results confirm and extend the three core concepts that were used to guide analysis: changes; contexts; future possibilities. The contextual and temporal influences on outcomes attainable from AAC for this cohort were also identified and illustrated through cross-case comparison. Deeper, analytic, and conceptual engagement with theory, which was then applied to analysis of the data, provided methodological rigour in the study. The results enhance our understanding of people\'s hopes and expectations from AAC and how these change over time.
CONCLUSIONS: This qualitative longitudinal research study provides new insights into the journeys of people who experience communication disability, and the shifting nature of their sense of identity as they engage with, and learn from using, AAC. The study is significant as it attends to the dynamic nature of experience and how contextual and experiential factors influence people\'s hopes and expectations from AAC. The paper presents an original application of longitudinal qualitative research methodology with people who use AAC which can be further applied and tested in the field of communication disability research.
CONCLUSIONS: What is already known on this subject We did not know the impact that time has on the concepts that have been identified to represent important outcomes from AAC. The existing concepts used to define outcomes from AAC were not adequately conceptualized to develop a patient-reported outcome measure. This study sought to extend our knowledge about outcomes from AAC. What this paper adds to the existing knowledge This study adds to the methodological toolkit available for qualitative inquiry in the field of communication disability research by presenting a longitudinal qualitative research methodology. It adds depth to our understanding of the concepts that underpin outcomes from AAC and highlights the dynamic nature of contexts and how this influences desired outcomes. What are the potential or actual clinical implications of this work? This longitudinal qualitative research study provides a broader perspective on the experience of getting AAC. It will enable clinicians to better navigate the contextual and transitionary factors that influence people\'s experience of acquiring AAC devices. The enhanced concepts described will also support clinical conversations that consider the wider facets of communication and what AAC can add to existing communicative tool kits beyond getting a message across.
摘要：
背景：有沟通困难的人可能会从使用增强和替代沟通（AAC）中受益。了解和衡量使用AAC的结果是评估设备和服务影响的重要组成部分。结果测量需要反映使用AAC对个人参与日常生活活动能力的影响的变化性质。对应该为AAC装置提供的结果评估提供信息的概念的理解有限。也不是人们对AAC的期望会随着时间的推移而改变。
目的：通过更多地了解人们对AAC的期望以及这些期望如何随着时间的推移而变化，为AAC患者报告的结果指标的制定提供信息。
方法：设计了一项纵向定性研究，并在2年内对7名参与者进行了研究。参与者是从英国西南部AAC的区域专家评估服务中招募的。进行了四次半结构化访谈：(1)在AAC评估之前，（2）经过评估，(3)在提供AAC装置之后直接和(4)在提供之后的6至12个月之间。本研究采用了一种基于纵向解释现象学分析原理的原始分析方法，用对话理论透镜应用。这种方法能够将收集到的一系列多模式和具体数据纳入本研究，并允许研究团队在关注时间和背景对经验的影响的同时，在整个队列组中得出突出的主题。
结果：结果确认并扩展了用于指导分析的三个核心概念：变化；上下文；未来的可能性。还通过跨病例比较确定并说明了AAC对该队列可获得的结果的上下文和时间影响。更深,分析，以及与理论的概念接触，然后应用于数据分析，在研究中提供了方法上的严谨性。结果增强了我们对AAC的人们的希望和期望以及这些随着时间的推移而变化的理解。
结论：这项定性纵向研究为经历沟通障碍的人的旅程提供了新的见解，以及他们参与时认同感的变化性质，并从使用中学习，AAC。这项研究具有重要意义，因为它关注的是经验的动态性质以及上下文和经验因素如何影响AAC的人们的希望和期望。本文介绍了使用AAC的人的纵向定性研究方法的原始应用，可以在沟通障碍研究领域进一步应用和测试。
结论：关于这一主题的已知情况我们不知道时间对已经确定的代表AAC重要结果的概念的影响。用于定义AAC结果的现有概念尚未充分概念化以开发患者报告的结果度量。这项研究旨在扩展我们对AAC结果的了解。本文对现有知识的补充本研究通过提出纵向定性研究方法，为交流障碍研究领域的定性调查提供了方法论工具包。它增加了我们对支持AAC结果的概念的理解的深度，并突出了上下文的动态性质以及这如何影响预期的结果。这项工作的潜在或实际临床意义是什么？这项纵向定性研究为获得AAC的经验提供了更广阔的视角。它将使临床医生能够更好地导航影响人们获取AAC设备的体验的上下文和过渡因素。所描述的增强概念还将支持临床对话，这些对话考虑了通信的更广泛方面，以及AAC可以添加到现有的通信工具包中，而不仅仅是获得消息。
目的：通过更多地了解人们对AAC的期望以及这些期望如何随着时间的推移而变化，为AAC患者报告的结果指标的制定提供信息。
方法：设计了一项纵向定性研究，并在2年内对7名参与者进行了研究。参与者是从英国西南部AAC的区域专家评估服务中招募的。进行了四次半结构化访谈：(1)在AAC评估之前，（2）经过评估，(3)在提供AAC装置之后直接和(4)在提供之后的6至12个月之间。本研究采用了一种基于纵向解释现象学分析原理的原始分析方法，用对话理论透镜应用。这种方法能够将收集到的一系列多模式和具体数据纳入本研究，并允许研究团队在关注时间和背景对经验的影响的同时，在整个队列组中得出突出的主题。
结果：结果确认并扩展了用于指导分析的三个核心概念：变化；上下文；未来的可能性。还通过跨病例比较确定并说明了AAC对该队列可获得的结果的上下文和时间影响。更深,分析，以及与理论的概念接触，然后应用于数据分析，在研究中提供了方法上的严谨性。结果增强了我们对AAC的人们的希望和期望以及这些随着时间的推移而变化的理解。
结论：这项定性纵向研究为经历沟通障碍的人的旅程提供了新的见解，以及他们参与时认同感的变化性质，并从使用中学习，AAC。这项研究具有重要意义，因为它关注的是经验的动态性质以及上下文和经验因素如何影响AAC的人们的希望和期望。本文介绍了使用AAC的人的纵向定性研究方法的原始应用，可以在沟通障碍研究领域进一步应用和测试。
结论：关于这一主题的已知情况我们不知道时间对已经确定的代表AAC重要结果的概念的影响。用于定义AAC结果的现有概念尚未充分概念化以开发患者报告的结果度量。这项研究旨在扩展我们对AAC结果的了解。本文对现有知识的补充本研究通过提出纵向定性研究方法，为交流障碍研究领域的定性调查提供了方法论工具包。它增加了我们对支持AAC结果的概念的理解的深度，并突出了上下文的动态性质以及这如何影响预期的结果。这项工作的潜在或实际临床意义是什么？这项纵向定性研究为获得AAC的经验提供了更广阔的视角。它将使临床医生能够更好地导航影响人们获取AAC设备的体验的上下文和过渡因素。所描述的增强概念还将支持临床对话，这些对话考虑了通信的更广泛方面，以及AAC可以添加到现有的通信工具包中，而不仅仅是获得消息。
