Faculty of Medicine and Health, School of Health Sciences, The University of Sydney, Camperdown, NSW, Australia.
Faculty of Health, Deakin University, Melbourne, VIC, Australia.
Int J Lang Commun Disord. 2022 May;57(3):680-694. doi: 10.1111/1460-6984.12717. Epub 2022 Mar 26.
There is growing recognition that communication can be affected in multiple sclerosis (MS) and can negatively impact relationships, employment and psychological well-being. Some persons with MS (PwMS) implement strategies to facilitate their communication; however, some do not. Most PwMS who report communication changes do not engage with speech-language pathology (SLP) services. This raises concerns that a large portion of communication changes associated with MS go under-recognized and unmanaged. Little is known about what PwMS want and need to facilitate effective communication.
To explore what PwMS want and need to better manage their communication changes.
METHODS & PROCEDURES: Three focus groups were conducted online using Zoom, with a total of 12 PwMS. Participants were an opportunistic sample of PwMS within Australia recruited via advertisements distributed to various MS organizations and clinics. Data were transcribed verbatim and analysed using thematic content analysis to provide a qualitative analysis of the data.
OUTCOMES & RESULTS: Two main themes emerged: (1) accessible knowledge and a holistic approach; and (2) partnerships. Specifically, the identified wants and needs of participants included: (1) assessment; (2) information; (3) raising awareness; (4) support groups; (5) a whole-person approach to intervention; (6) geographically and economically accessible and navigable services; (7) effective patient-physician interactions; and (8) a multidisciplinary team-based approach (e.g., SLP, psychology, neuropsychology, occupational therapy).
CONCLUSIONS & IMPLICATIONS: This study identified a wide range of unmet wants and needs of PwMS related to communication changes. Participants wanted improved collaborative partnerships with healthcare professionals to better manage their communication changes. For example, healthcare professionals could ask PwMS about potential communication changes, provide education and make appropriate referrals. Education and information provision could focus on communication changes in MS, factors that trigger or exacerbate communication changes, impacts, self-management strategies, and available supports and services. Specific implications for clinical practice and future research are suggested in this paper, including ideas for patient education materials and content, suggestions for communication-specific screening and information that could be shared in patient-physician interactions, the development of guidelines to systematically screen, assess, manage and monitor communication changes in MS, and the design of evidence-based communication interventions for this clinical population. The results from this study can be used to guide the design of supports and services to help PwMS better manage communication changes, with the aim to reduce the negative impacts.
What is already known on this subject PwMS can experience communication changes across a range of domains, including speech, voice, fluency, expressive and receptive language, and cognitive-linguistic functions. These changes can have profound and far-reaching negative impacts on educational and vocational outcomes, social participation, relationships, psychological well-being, and quality of life. Most PwMS who report communication changes do not engage with SLP services. There has been little research exploring what PwMS want and need to help manage their communication changes. What this paper adds to the existing knowledge This research is the first study of its kind that sets out specifically to explore what PwMS want and need to better manage their communication changes. This study increases our understanding of, and provides valuable insights into, the specific types of supports and services PwMS desire to access, and the partnerships and kinds of interactions PwMS dream of having with healthcare professionals to manage these changes. This information can facilitate the development of future interventions to manage communication changes in MS. What are the potential or actual clinical implications of this work? PwMS wanted healthcare professionals to ask about potential communication changes, provide education and make appropriate referrals. When providing education and information on communication changes in MS, healthcare professionals should focus on covering symptoms, triggers, impacts, self-management strategies, and available supports and services. There is a timely need to develop guidelines and interventions to manage communication changes in MS to reduce their negative impacts.
越来越多的人认识到，多发性硬化症（MS）会影响交流，并对人际关系、就业和心理健康产生负面影响。一些多发性硬化症患者（PwMS）会采取策略来促进交流；然而，也有一些患者不会。大多数报告交流变化的 PwMS 并未使用言语语言病理学（SLP）服务。这引发了人们的担忧，即与 MS 相关的大部分交流变化都没有得到充分的认识和管理。目前对于 PwMS 需要什么来促进有效的沟通还知之甚少。
探讨 PwMS 需要什么来更好地管理他们的交流变化。
使用 Zoom 在线进行了三次焦点小组讨论，共有 12 名 PwMS 参与。参与者是澳大利亚的 PwMS 机会样本，通过向各种 MS 组织和诊所分发广告招募。数据被逐字转录，并进行主题内容分析，对数据进行定性分析。
出现了两个主要主题：（1）可及的知识和整体方法；（2）伙伴关系。具体而言，参与者的需求和愿望包括：（1）评估；（2）信息；（3）提高认识；（4）支持小组；（5）干预的整体方法；（6）地理和经济上可及和可导航的服务；（7）有效的医患互动；（8）多学科团队方法（如 SLP、心理学、神经心理学、职业治疗）。
本研究确定了 PwMS 与交流变化相关的一系列未满足的需求和愿望。参与者希望与医疗保健专业人员建立更好的合作伙伴关系，以更好地管理他们的交流变化。例如，医疗保健专业人员可以询问 PwMS 是否存在潜在的交流变化，提供教育并进行适当的转介。教育和信息提供可以集中在 MS 中的交流变化、触发或加剧交流变化的因素、影响、自我管理策略以及可用的支持和服务上。本文提出了一些对临床实践和未来研究的具体影响，包括为患者教育材料和内容提供建议，为交流特定筛查和可以在医患互动中分享的信息提供建议，制定系统筛查、评估、管理和监测 MS 中交流变化的指南，以及为这一临床人群设计基于证据的交流干预措施。本研究结果可用于指导支持和服务的设计，以帮助 PwMS 更好地管理交流变化，目标是减少其负面影响。
