Do caregiver proxy reports and congruence of client-proxy activity participation goals relate to quality of life in people with aphasia?

BACKGROUND 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. AIMS 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.