Life activity choices by people with aphasia: repeated interviews and proxy agreement

Haley, Katarina L.; Womack, Jennifer L.; Harmon, Tyson G.; McCulloch, Karen; Faldowski, Richard A.

doi:10.1080/02687038.2018.1506087

Cited by 13 publications

(7 citation statements)

References 49 publications

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“…Like the results reported by Haley et al . (2019), PWA selected the highest percentage of activities in the social activity category (50.2%), but physical (49.6%) activities were close behind. Individual variations in desired activities were expected and support the use of the LIV Cards in developing personally salient and functional goals for aphasia therapy.…”

Section: Discussionmentioning

confidence: 94%

“…It is noteworthy that the top activities in our study—those endorsed by at least 75% of our participants—were also endorsed by at least 60% of the participants in Haley et al . (2019). The most frequently endorsed activities from PWA in this study were walking/running and going to the beach, endorsed by 22 of the 25 participants.…”

Section: Discussionmentioning

confidence: 99%

“…2013) and 69% in their later study (Haley et al . 2019) for activities PWA wanted to do more. Further, agreement percentages were also like those of Haley and Wangerman (2012) comparing LIV Card reports for people without aphasia and their close friends or family members.…”

Section: Discussionmentioning

confidence: 99%

“…The desired activities selected by the PWA can then provide a framework for rehabilitation goals to promote autonomy and increase participation (Haley et al . 2010, 2019).…”

Section: Introductionmentioning

confidence: 99%

“…A similar congruence rate (69%) was found by Haley et al . (2019). They describe this level of agreement as ‘moderate to low’, reflecting a need to explore further the congruence between PWA and proxy respondents’ reports and how it may affect QOL for PWA.…”

Section: Introductionmentioning

confidence: 99%

See 4 more Smart Citations

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

Nicholas

Jennelle

Connor

et al. 2020

Intl J Lang & Comm Disor

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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 to existing knowledger 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? r 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.

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Section: Discussionmentioning

confidence: 94%

Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

“…The desired activities selected by the PWA can then provide a framework for rehabilitation goals to promote autonomy and increase participation (Haley et al . 2010, 2019).…”

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

See 3 more Smart Citations

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

Nicholas

Jennelle

Connor

et al. 2020

Intl J Lang & Comm Disor

View full text Add to dashboard Cite

show abstract

Communication Partner Training (CPT) to Improve Conversation, Communication, and Mental Health

Pais,

Jagoe

2023

Spoken Discourse Impairments in the Neurogenic Populations

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Exploring the Perspectives of Parents of Individuals with Autism from Low-Resourced Communities to Inform Family Navigator Programs

et al. 2023

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Family navigator programs are becoming increasingly common among families of children with autism. Yet, it is unclear how family navigators are developed; by exploring the input of families of children with autism, such programs can be responsive to family needs. In this study, 12 parents of autistic children from low-resourced communities were interviewed to inform the development of a family navigator program. Findings demonstrated that programs need to prepare navigators to address barriers such as limited knowledge and difficulty accepting an autism diagnosis. Programs should teach navigators to use strategies with families including educating families about services and connecting families with peer support. Program content should reflect direct services, government services, and advocacy strategies. Implications are discussed.

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Life activity choices by people with aphasia: repeated interviews and proxy agreement

Cited by 13 publications

References 49 publications

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

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

Communication Partner Training (CPT) to Improve Conversation, Communication, and Mental Health

Exploring the Perspectives of Parents of Individuals with Autism from Low-Resourced Communities to Inform Family Navigator Programs

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