Institute of Neuroscience and Physiology, Division of Speech and Language Pathology, University of Gothenburg, Gothenburg, Sweden.
Int J Lang Commun Disord. 2010 May-Jun;45(3):381-93. doi: 10.3109/13682820903105145.
As an effect of the cognitive, emotional and motor symptoms associated with Huntington's disease, communicative interaction is often dramatically changed. No study has previously included the subjective reports on this subject from individuals with Huntington's disease.
To explore the qualitative aspects of how communication is affected by Huntington's disease from a triangular perspective represented by individuals with Huntington's disease, family members and professional carers.
METHODS & PROCEDURES: Eleven persons with Huntington's disease, seven family members and ten carers were interviewed in focus groups or individually, using a semi-structured interview guide. The interviews were transcribed verbatim and analysed using thematic content analysis, resulting in a number of free codes concerning communication. The codes describing related phenomena were merged into categories. Categories were analysed and reanalysed resulting in three major themes, common to the three groups of participants.
OUTCOMES & RESULTS: The themes found were: Communication has changed; Factors that influence communication negatively; and Factors that influence communication positively. Subcategories differed between the three groups. All participants seemed to acknowledge the variability and lack of initiative in communication. The persons without Huntington's disease focused on the changes in terms of speech, language comprehension, the lack of depth in conversation and the need to make adjustments, while the persons with Huntington's disease focused on the effort and concentration demanded to communicate. They described the change they perceived in their communicative ability in terms of loss. All participants thought that an emotional load had a negative impact on communication. Furthermore, individuals with Huntington's disease stressed that other people's speed of communication had a negative impact, while family members and carers stressed that things such as personality changes in persons with Huntington's disease and lack of eye contact with them influenced communication negatively. All participants acknowledged the need for increased participation in social life in order to enhance communication.
CONCLUSIONS & IMPLICATIONS: In brief, persons with Huntington's disease expressed a need for a richer social life and more (adjusting) conversation partners, family members expressed a need for more support and professional carers wanted more information about Huntington's disease. The triangular perspective utilized in the present study completed the picture of the communicative consequences of Huntington's disease. In particular, it became clear, that the insights of persons with Huntington's disease can and has to be included in communicative assessments and plans for intervention.
由于亨廷顿舞蹈症引起的认知、情感和运动症状，交际互动常常受到极大影响。目前还没有研究从亨廷顿舞蹈症患者的角度报告过这方面的主观感受。
从亨廷顿舞蹈症患者、家庭成员和专业护理人员三方代表的三角视角探讨交流受亨廷顿舞蹈症影响的定性方面。
11 名亨廷顿舞蹈症患者、7 名家庭成员和 10 名护理人员在焦点小组或个别访谈中，使用半结构化访谈指南进行了访谈。访谈记录被逐字转录，并使用主题内容分析进行分析，产生了一些与交流相关的自由编码。描述相关现象的代码被合并为类别。对类别进行分析和再分析，产生了三个主要主题，这三个主题适用于三个组别的参与者。
发现的主题包括：交流发生了变化；对交流产生负面影响的因素；对交流产生积极影响的因素。这三个组别的亚类别有所不同。所有参与者似乎都承认交流的可变性和缺乏主动性。没有亨廷顿舞蹈症的人关注言语、语言理解、对话缺乏深度和需要调整的方面，而亨廷顿舞蹈症患者则关注交流所需的努力和注意力。他们用丧失来描述自己感知到的交流能力的变化。所有参与者都认为情绪负担对交流有负面影响。此外，亨廷顿舞蹈症患者强调其他人的交流速度对交流有负面影响，而家庭成员和护理人员则强调亨廷顿舞蹈症患者的个性变化和与他们缺乏眼神接触等因素对交流有负面影响。所有参与者都承认需要更多地参与社会生活以增强交流。
简而言之，亨廷顿舞蹈症患者表示需要更丰富的社交生活和更多（调整）的对话伙伴，家庭成员表示需要更多的支持，专业护理人员希望获得更多关于亨廷顿舞蹈症的信息。本研究中使用的三角视角完善了亨廷顿舞蹈症交际后果的全貌。特别是，清楚的是，亨廷顿舞蹈症患者的观点可以并且必须纳入交际评估和干预计划。
