Reducing social isolation for adults with chronic communication disabilities

项目摘要 社会孤立是导致健康状况、生活质量甚至生存率下降的主要因素。成人 沟通障碍是社会孤立的高风险，因为沟通障碍使其 他们很难与他人互动。许多成年人的沟通障碍是慢性的，因此， 使人们能够恢复日常活动的典型的交流能力是不可行的。 出于这个原因，有沟通障碍的人依赖于环境中的住宿来帮助他们。 他们仍然积极参与。沟通本质上涉及人与人之间的互动。因此 最关键的环境适应（或障碍）是人的行为-沟通伙伴 - 与之互动的人。“感知社会支持”一词通常用于指 人们感到在生病或残疾时他们可以得到帮助。我们之前的研究已经确定， 在一般医疗保健领域中定义和测量的感知社会支持不足以 获取沟通的社会支持，如身体，态度和行为障碍所形成的， 环境此外，通常可能提供这种支持的家庭成员可能会受到阻碍，因为 他们是如何通过增加沟通障碍本身（第三方残疾）的影响， 照顾负担和情感联系的丧失。定性研究表明，沟通伙伴是 在保持沟通障碍者在工作、家庭和社交活动中的积极性方面具有很大的影响力。 然而，很少有人知道：1）的程度和性质的感知社会支持的沟通，以及如何 这影响了沟通障碍者的生活参与，2）家庭在多大程度上 体验第三方残疾，以及这如何影响有沟通能力的人的社会参与 残疾，以及3）这些现象在不同沟通障碍中的相似程度。 语言病理学家被要求提供以患者为中心的生物心理社会护理， 造成沟通障碍。然而，我们对社会角色的理解存在重大差距， 生活参与中的环境因素使临床医生缺乏经验基础或临床工具， 满足客户的社会环境需求。这项研究的长期目标是帮助人们 沟通障碍者及其家庭通过以下方式减少社会孤立并参与实现生活参与 改善对病人的环境适应/社会支持以及对家庭的相互支持。的 本研究的目的是探讨社会支持知觉的假设， 沟通是一种独特的结构，它有助于生活参与，而不是一般的概念， 医疗保健中的社会支持。这项研究还将探讨第三方残疾如何有助于 减少沟通参与。包括的人群是那些有语言或声音障碍的人 帕金森氏病、喉肌张力障碍、喉切除术和口咽癌。

PROJECT ABSTRACT Social isolation is a major contributor to poorer health outcomes, quality of life, and even survival. Adults with communication disabilities are at a high risk for social isolation because communication impairments make it difficult for them to interact with others. Many communication disorders in adults are chronic, thus restoring typical communication abilities to enable people to resume usual participation in daily activities is not feasible. For that reason, people with communication disabilities depend on accommodations in the environment to help them remain active and engaged. Communication inherently involves interactions among people. Thus, the most critical environmental accommodation (or barrier) is the behavior of people – the communication partners - with whom the person interacts. The term ‘perceived social support’ is often used to refer to the help that people feel they have available to them in times of illness or disability. Our prior research has identified that perceived social support, as defined and measured in general healthcare domains, is not adequate for capturing social support for communication as shaped by physical, attitudinal, and behavioral barriers in the environment. Furthermore, family members who might usually provide such support may be hindered because of how they are impacted by the communication disability themselves (third-party disability) through increased care burden and loss of emotional connections. Qualitative research suggests that communication partners are highly influential in keeping people with communication disabilities active in work, home, and social activities. However, little is known about: 1) the extent and nature of perceived social support for communication and how this influences life participation for people with communication disabilities, 2) the extent to which families experience third-party disability and how this impacts social participation for people with communication disabilities, and 3) the extent to which these phenomena are similar across different communication disorders. Speech-language pathologists are called to provide patient-centered, biopsychosocial care addressing all contributors to communication disability. However, the significant gap in our understanding of the role of socio- environmental factors in life participation has left clinicians with sparse empirical foundations or clinical tools for addressing the socio-environmental needs of clients. The long-term goal of this research is to help people with communication disabilities and their families reduce social isolation and engage in fulfilling life participation by improving environmental accommodations / social support for patients and reciprocal support for families. The aims of this survey-methods study are to explore the hypothesis that perceived social support for communication is a unique construct that contributes to life participation separately from the general concept of perceived social support used in healthcare. This study will also explore how third-party disability contributes to reduced communicative participation. The populations included are those with speech or voice impairments due to Parkinson’s disease, laryngeal dystonia, laryngectomy, and oral-pharyngeal cancer.