Balance and preference in activity participation for informal caregivers of people with aphasia: A questionnaire study

Haley, Katarina L.; Jacks, Adam; Morrison, Blaise; Richardson, Jessica D.

doi:10.1080/02687038.2019.1659936

Cited by 5 publications

(5 citation statements)

References 54 publications

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“…These results represent the care partners' primary or most frequent friendship activities and communication methods; however, they might not reflect their preferred ways of interacting with friends. Haley et al (2019) found discrepancies between the social activities that 70 care partners of PWA were currently doing and what they wanted to be doing. "Having coffee/tea with friends" was a desired activity for more than 70% of their participants, demonstrating that many care partners want more leisure time with friends.…”

Section: Care Partners' Perspectives On Friendship Over Timementioning

confidence: 99%

“…Haley et al (2019) reported that care partners of PWA were less integrated in their communities and participated in fewer social and leisure activities than their age-matched controls. The reduced life participation experienced by care partners of PWA is likely a consequence of a substantial reduction of time with others (Johansson et al, 2022).…”

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confidence: 98%

“…Disparities in stroke care (e.g., access to services, type and timing of treatment provided), which disproportionately affect racial minorities (Ikeme et al, 2022;Jacobs & Ellis, 2022), also can increase caregiving demands and negatively impact health outcomes for both the stroke/brain injury survivor and their care partner. Haley et al (2019) reported that care partners of PWA were less integrated in their communities and participated in fewer social and leisure activities than their age-matched controls. The reduced life participation experienced by care partners of PWA is likely a consequence of a substantial reduction of time with others (Johansson et al, 2022).…”

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confidence: 98%

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Caregiving and Friendship

Madden

Therrien

Bislick

et al. 2023

Topics in Language Disorders

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Friendship is an essential component of quality of life. The ongoing lifestyle changes and strain typically experienced by care partners of people with aphasia (PWA) can impact their social network, with friendships being particularly vulnerable to change. This study aimed to understand the impact of caregiving on care partners' friendships over time from the perspective of care partners of PWA. An online survey addressing care partners' demographics, care recipients' demographics, and care partners' perceptions of their friendships over time (before caregiving and during the acute and chronic stages of caregiving) was codesigned with three care partner stakeholders and then distributed to other individuals who care for a person with aphasia. Survey responses from 35 care partners of PWA who completed the survey were analyzed using quantitative and qualitative methods. Most participants reported their friendships were different in both the acute and chronic stages of caregiving compared with before caregiving. Overall, perceived friendship satisfaction and support decreased over time. Qualitative analysis revealed five main factors that could either facilitate or hinder care partner friendships, including role changes, personal characteristics, friendship initiation, friendship interactions, and outside influences. This work highlights that caring for a loved one with aphasia negatively impacts friendships for many care partners, and these friendship changes are often long-lasting. More resources for managing the impact of aphasia on care partners' social lives are needed, which, in turn, might improve the friendships and well-being of both the care partner and their loved one with aphasia.

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Section: Care Partners' Perspectives On Friendship Over Timementioning

confidence: 99%

mentioning

confidence: 98%

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confidence: 98%

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Caregiving and Friendship

Madden

Therrien

Bislick

et al. 2023

Topics in Language Disorders

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“…A preliminary search for existing systematic reviews and/or scoping reviews on the topic found that within the UK there are limited research syntheses available on this topic, although there is more research in this area in the US and Canada (14)(15)(16)(17)(18)(19)(20)(21)(22). A protocol has been published for a UK scoping review looking at PA in people with young-onset dementia and their carers (23), although at the time of writing the full review has not been published.…”

Section: Introductionmentioning

confidence: 99%

A Systematic Review on the Prevalence of Physical Activity, and Barriers and Facilitators to Physical Activity, in Informal Carers in the United Kingdom

Horne¹,

Kentzer²,

Smıth³

et al. 2021

Journal of Physical Activity and Health

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Background: It is estimated that 17% of the UK adult population are informal carers, usually for a family member, with a majority reporting that they are not able to engage in physical activity as much as they would like. The aim of this review is to provide a greater understanding of the prevalence of, and barriers and facilitators to, physical activity of informal carers in the United Kingdom. Methods: A systematic review of relevant databases and grey literature was undertaken, following Preferred Reporting Items for Systematic Reviews and Meta-Analysis guidance, from its inception until July 17, 2020. Results: Barriers to physical activity include increasing aging, not wanting to leave the caree alone, the caree being unable to take part in activities, health conditions, fatigue, lack of time, and difficulties in changing the routine for the caree. Facilitators include an appreciation of the benefits of engaging in exercise, previous participation in activities, group activities with similar people, and having some free time. Conclusions: Due to the paucity of research into the prevalence of, and barriers and facilitators to, physical activity in informal carers in the United Kingdom, this systematic review highlights the need for further research, focusing primarily on the physical activity of informal carers caring for individuals with a range of conditions. A further systematic review exploring these issues internationally is warranted.

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“…2 Regardless of etiology, aphasia negatively impacts the quality of life of individuals living with it and of those who are closest to them. [3][4][5][6][7] Persons with stable aphasia (PWSAs) or with primary progressive aphasia (PWPPAs) can benefit from intervention, though the most effective approaches, and how to optimally match approaches to individuals with varied symptomatology, remain unknown. Current recommendations state that PWSAs and PWPPAs should engage in skilled and functional speech-language assessment and treatment, which can include a variety of settings, schedules, and techniques.…”

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confidence: 99%

Can Script Training Improve Narrative and Conversation in Aphasia across Etiology?

2019

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Script training is an effective treatment of stable (e.g., stroke-induced) and progressive aphasia of varying severities and subtypes. The theoretical underpinnings of script training are discussed and include fluency-inducing conditions, speech shadowing, principles of neuroplasticity, and automatization. Script training outcomes are reviewed, with a focus on discourse in persons with stable aphasia (PWSAs) and in persons with primary progressive aphasia (PWPPAs). PWSAs and PWPPAs are able to acquire and maintain short scripted monologues or conversational dialogues, with some evidence of generalization to untrained topics and settings. Advances in both technology and access have enriched script training protocols, so they now range from no-tech written script approaches to high-tech audiovisual support and avatars. Advances in audio and/or visual support promote large amounts of practice of less errorful whole-message language processing during a fluent language inducing condition. With enough practice, users decrease reliance on supports and independently produce scripted content. Script training can be delivered in a variety of settings (individual, group, telepractice), lends itself well to homework programs, and is in accordance with the principles of neuroplasticity for neurorehabilitation. Incorporating script training into therapy programming is advantageous throughout aphasia recovery following brain injuries such as stroke. It is also beneficial for persons with progressive disease for prophylaxis, remediation, and compensation. Recommendations for implementing script training in clinical practice and future research directions are presented.

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Balance and preference in activity participation for informal caregivers of people with aphasia: A questionnaire study

Cited by 5 publications

References 54 publications

Caregiving and Friendship

Caregiving and Friendship

A Systematic Review on the Prevalence of Physical Activity, and Barriers and Facilitators to Physical Activity, in Informal Carers in the United Kingdom

Can Script Training Improve Narrative and Conversation in Aphasia across Etiology?

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