MGH Institute of Health Professions, Department of Communication Sciences and Disorders, Boston, MA, USA.
Washington University School of Medicine, Program in Occupational Therapy, St. Louis, MO, USA.
Int J Lang Commun Disord. 2020 May;55(3):373-386. doi: 10.1111/1460-6984.12524. Epub 2020 Feb 13.
Achieving activity participation goals is a key factor in quality of life (QOL) for people with aphasia (PWA), but expressing participation goals can be difficult for many of them. Proxy reports by caregivers may not accurately reflect the interests and participation goals of PWA, and discrepancies in these goals between PWA and their caregivers may affect QOL, based on the assumption that caregivers' awareness of their loved ones' unique participation goals may be important to increasing PWA activity participation.
To examine everyday activities valued by PWA using the Life Interests and Values (LIV) Cards; to measure congruence between PWA and their caregivers on life participation goals; and to measure how congruence of PWA-caregiver participation goals related to QOL.
METHODS & PROCEDURES: A convenience sample of 25 PWA completed the LIV Card assessment and the Stroke Aphasia Quality of Life Scale-39 to assess participation goals and QOL. Participation goals were also evaluated with respect to age, time post-onset and aphasia severity. A total of 12 caregivers were administered the LIV Cards to calculate agreement between PWA-proxy activity reports and the relationship between agreement and QOL.
OUTCOMES & RESULTS: PWA endorsed wanting to participate more in a wide range of activities, with common interests in walking/running, going to the beach and eating out, among others. PWA-caregiver activity agreement was fair to moderate with point-to-point agreement averaging 70%. However, no relationship between degree of congruence in PWA-proxy pairs and QOL was found.
CONCLUSIONS & IMPLICATIONS: PWA have a variety of activity participation goals that can be integrated into intervention plans. Dependence on proxy respondents should be reduced as much as possible to support self-determination for PWA. What this paper adds What is already known on the subject Achieving activity participation goals is a key factor in QOL for PWA, but communicating about participation goals can be difficult for many of them. Because proxy reports by caregivers may not accurately reflect the interests and participation goals of PWA, this study examined how both PWA and their caregivers responded to an aphasia-friendly assessment for determining participation goals, and then compared level of agreement about these goals to QOL. Because activity participation is known to be an important factor in QOL, the reason for investigating how agreement relates to QOL is that caregivers' awareness of their loved ones' unique participation goals likely facilitates increased participation by PWA in their ongoing desired activities. The relationship between PWA-caregiver agreement regarding participation goals and QOL in PWA had not yet been investigated before this study. What this paper adds to existing knowledge This study adds additional as well as confirmatory information to the existing literature about life participation goals of community-dwelling individuals with chronic aphasia. Top activities endorsed by a group of 25 PWA are reported within four activity domains (home and community activities, creative and relaxing activities, physical activities, and social activities). Results indicated that agreement between PWA and their caregiver proxies on PWA's most desired activities was < 50%. However, the level of agreement between caregivers and proxies on participation goals was not significantly related to QOL in this sample. What are the potential or actual clinical implications of this work? PWA have a variety of participation goals that can be integrated into intervention plans to be carried out with clinicians, caregivers and family members. The use of proxy respondents when determining participation goals should be reduced as much as possible to support self-determination for PWA. Use of the LIV Cards, a picture-based sorting-task assessment, reduces the need for proxy responders and guesswork about the specific participation goals of PWA.
对于失语症患者（PWA）来说，实现活动参与目标是生活质量（QOL）的关键因素，但他们中的许多人很难表达参与目标。照顾者的代理报告可能无法准确反映 PWA 的兴趣和参与目标，而且 PWA 和他们的照顾者之间的这些目标存在差异可能会影响 QOL，这是基于照顾者对其亲人独特参与目标的认识可能对增加 PWA 的活动参与很重要的假设。
使用生活兴趣和价值观（LIV）卡评估 PWA 重视的日常活动；测量 PWA 和他们的照顾者在生活参与目标上的一致性；并衡量 PWA-照顾者参与目标的一致性与 QOL 的关系。
25 名 PWA 完成了 LIV 卡评估和中风失语症生活质量量表-39，以评估参与目标和 QOL。还评估了参与目标与年龄、发病后时间和失语症严重程度的关系。共有 12 名照顾者接受了 LIV 卡评估，以计算 PWA-代理活动报告之间的一致性，以及一致性与 QOL 之间的关系。
PWA 表示希望更多地参与各种活动，包括散步/跑步、去海滩和外出就餐等常见活动。PWA-照顾者活动的一致性为中等至良好，平均点对点点一致性为 70%。然而，没有发现 PWA-代理对之间的一致性程度与 QOL 之间存在关系。
PWA 有各种各样的活动参与目标，可以纳入干预计划。应尽可能减少对代理应答者的依赖，以支持 PWA 的自决。本文的贡献是什么这是已经知道的主题在 PWA 中，实现活动参与目标是 QOL 的关键因素，但许多人很难表达参与目标。由于照顾者的代理报告可能无法准确反映 PWA 的兴趣和参与目标，因此本研究检查了 PWA 和他们的照顾者如何对失语症友好的评估来确定参与目标，然后比较了这些目标的一致性与 QOL。由于活动参与是 QOL 的一个重要因素，因此研究一致性与 QOL 之间的关系的原因是，照顾者对其亲人独特参与目标的认识可能会促进 PWA 更多地参与他们正在进行的愿望活动。之前这项研究没有调查 PWA 照顾者对参与目标的一致性与 PWA 之间的关系。本文在现有的文献中增加了有关社区居住的慢性失语症患者生活参与目标的补充和确认信息。报告了一组 25 名 PWA 最希望参与的活动，这些活动分为四个活动领域（家庭和社区活动、创造性和放松活动、体育活动和社会活动）。结果表明，PWA 和他们的照顾者代理之间在 PWA 最希望的活动上的一致性<50%。然而，在这个样本中，照顾者和代理之间的参与目标一致性与 QOL 没有显著关系。这项工作有什么潜在或实际的临床意义？PWA 有各种各样的参与目标，可以纳入与临床医生、照顾者和家庭成员一起进行的干预计划。在确定参与目标时，应尽可能减少对代理应答者的使用，以支持 PWA 的自决。使用 LIV 卡，一种基于图片的分类任务评估，减少了对代理应答者的需求和对 PWA 具体参与目标的猜测。
