Restricted Participation in Stroke Caregivers: Who Is at Risk?

Grigorovich, Alisa; Forde, Samantha; Levinson, D.; Bastawrous, Marina; Cheung, Angela M.; Cameron, Jill I.

doi:10.1016/j.apmr.2015.03.004

Cited by 29 publications

(40 citation statements)

References 60 publications

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“…These findings are consistent with concerns regarding safety found in previous studies with powered wheelchairs (Frank et al, 2010; Roberts et al, 2012) and the notion that, despite provision of assistive technologies, caregiver responsibility and stress remains (Mortenson et al, 2012). Furthermore, the PM-CATOM items that represent overall burden (Part 2) suggest that these caregivers experienced limited recreational and leisure activities, providing support for the idea that caregiver burden impacts participation in meaningful activities (Grigorovich et al, 2015). For example, caregivers’ perceptions of their leisure time has been shown to be significantly, negatively associated with burden, after controlling for the carers’ functional status and other caregiver sociodemographic variables (Losada et al, 2010).…”

Section: Discussionmentioning

confidence: 94%

“…According to Darragh and colleagues (2015), 58% of family caregivers of adults with various chronic physical disabilities reported high levels of emotional stress and 38% reported physical stresses associated with providing help. Caregiver burden has also been shown to reduce the social support of caregivers (Losada et al, 2010), their participation in meaningful activities (Grigorovich et al, 2015), and their life satisfaction (Losada et al, 2010). …”

mentioning

confidence: 99%

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Understanding the Burden Experienced by Caregivers of Older Adults Who Use a Powered Wheelchair: A Cross-Sectional Study

Rushton

Labbé

Demers

et al. 2017

Gerontology and Geriatric Medicine

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Objective: In this study, we aimed to describe the burden of family caregivers providing powered wheelchair-related and overall assistance and test the hypotheses that caregiver burden correlates with participation, wheelchair skills capacity, anxiety, depression, and social support. Methods: Cross-sectional study. Participants included 35 family caregivers of powered wheelchair users. Caregivers were assessed using the Power Mobility Caregiver Assistive Technology Outcome Measure, Late Life Disability Instrument, Wheelchair Skills Test Questionnaire for caregivers, Hospital Anxiety and Depression Scale, and Interpersonal Support Evaluation List–12. Results: The most burdensome powered wheelchair assistance items were providing verbal hints/directions, needing to be nearby, anxiety, and fear that user may be harmed. The most burdensome overall assistance item was feeling limited in recreational/leisure activities. Caregiver burden was significantly correlated with participation limitations, anxiety, depression, and social support. Discussion: Caregivers experience burden for wheelchair-related and overall help, especially psychological burden. Such results have implications for the type of resources required to support family caregivers.

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Section: Discussionmentioning

confidence: 94%

mentioning

confidence: 99%

Understanding the Burden Experienced by Caregivers of Older Adults Who Use a Powered Wheelchair: A Cross-Sectional Study

Rushton

Labbé

Demers

et al. 2017

Gerontology and Geriatric Medicine

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“…Given the difficulties experienced by younger carers in the caring role, there is a need to target younger adult carers in terms of both uncovering the specific support needs of this group and developing specific intervention to address these needs (Grigorovich et al, 2015). Additionally, younger carers reported more criticism from the person with an ABI than older carers.…”

Section: Discussionmentioning

confidence: 99%

“…In terms of healthrelated quality of life (HRQoL) needs, Carlozzi et al (2015), in a qualitative study, reported that the principal aspects of HRQoL affected by caring for an individual with brain injury were social health (42% of responses), emotional health (34%), physical health (11%), cognitive health (3%), and feelings or expectations of future losses (9%). ABI carers consistently show an increased incidence of clinically relevant distress, particularly depression and anxiety (Douglas & Spellacy, 2000;Ennis, Rosenbloom, Canzian, & Topolovec-Vranic, 2013;Gillen, Tennen, Affleck, & Steinpreis, 1998;Kreutzer, Rapport, et al, 2009;Kreutzer, Stejskal, et al, 2009;Sch€ onberger, Ponsford, Olver, & Ponsford, 2010), which may adversely affect broader aspects of their quality of life and participation (e.g., Grigorovich, Forde, Levinson, Cheung, & Cameron, 2015). ABI carers consistently show an increased incidence of clinically relevant distress, particularly depression and anxiety (Douglas & Spellacy, 2000;Ennis, Rosenbloom, Canzian, & Topolovec-Vranic, 2013;Gillen, Tennen, Affleck, & Steinpreis, 1998;Kreutzer, Rapport, et al, 2009;Kreutzer, Stejskal, et al, 2009;Sch€ onberger, Ponsford, Olver, & Ponsford, 2010), which may adversely affect broader aspects of their quality of life and participation (e.g., Grigorovich, Forde, Levinson, Cheung, & Cameron, 2015).…”

Section: What Does This Study Add?mentioning

confidence: 99%

“…Similar results utilizing different measures of quality of life and burden have also been reported in quantitative cross-sectional studies (Bakas, Austin, Jessup, Williams, & Oberst, 2004;Bartolo et al, 2010;Miyashita et al, 2009). ABI carers consistently show an increased incidence of clinically relevant distress, particularly depression and anxiety (Douglas & Spellacy, 2000;Ennis, Rosenbloom, Canzian, & Topolovec-Vranic, 2013;Gillen, Tennen, Affleck, & Steinpreis, 1998;Kreutzer, Rapport, et al, 2009;Kreutzer, Stejskal, et al, 2009;Sch€ onberger, Ponsford, Olver, & Ponsford, 2010), which may adversely affect broader aspects of their quality of life and participation (e.g., Grigorovich, Forde, Levinson, Cheung, & Cameron, 2015).…”

Section: What Does This Study Add?mentioning

confidence: 99%

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A structured multicomponent group programme for carers of people with acquired brain injury: Effects on perceived criticism, strain, and psychological distress

Fortune

Rogan

Richards

2015

British J Health Psychol

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What is already known on this subject? A number of studies have suggested that carers of people with acquired brain injury (ABI) experience greater levels of carer burden and mental health difficulties than carers of other patient groups. Previous interventional studies on ABI are few, and such studies have diverged in the extent to which they have been oriented towards education, psychological support, or management of behavioural difficulties, making results somewhat difficult to apply in community health settings with this potential client group. What does this study add? We develop, describe, and evaluate a brief structured multicomponent carers' training and support programme for carers of people with ABI. Not all outcomes were affected positively by the intervention. While the intervention successfully reduced carer strain and critical comments, distress did not significantly reduce compared to people in a waiting list control group. Carers who were spouses/partners and carers who were parents exhibited comparable levels of strain, distress, and perceived criticism. Younger carers reported significantly higher levels of distress and carer strain at induction to the programme. The positive effects of the programme were maintained for at least 3 months, suggesting that it may have initial validity for improving some of the negative aspects of the carer experience.

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Long‐term cost of spouses’ informal support for dependent midlife stroke survivors

et al. 2017

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ObjectivesStroke is a major global disease that requires extensive care and support from society and relatives. The aim of this study was to identify and quantify the long‐term informal support and to estimate the annual cost of informal support provided by spouses to their stroke surviving partner.MethodData were based on the 7‐year follow‐up of the Sahlgrenska Academy Study on Ischemic Stroke. One‐third of the spouses stated that they provided support to their stroke surviving partner. The magnitude of the support was assessed with a study‐specific time‐diary and was estimated for independent and dependent stroke survivors based on the scores of the modified Rankin Scale. To deal with skewed data, a two‐part econometric model was used to estimate the annual cost of informal support.ResultCohabitant dyads of 221 stroke survivors aged <70 at stroke onset were included in the study. Spouses of independent stroke survivors (n = 188) provided on average 0.15 hr/day of practical support and 0.48 hr/day of being available. Corresponding figures for spouses of dependent stroke survivors (n = 33) were 5.00 regarding practical support and 9.51 regarding being available. The mean annual cost of informal support provided for independent stroke survivors was estimated at €991 and €25,127 for dependent stroke survivor.ConclusionThe opportunity cost of informal support provided to dependent midlife stroke survivors is of a major magnitude many years after stroke onset and should be considered in economic evaluations of health care.

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Restricted Participation in Stroke Caregivers: Who Is at Risk?

Cited by 29 publications

References 60 publications

Understanding the Burden Experienced by Caregivers of Older Adults Who Use a Powered Wheelchair: A Cross-Sectional Study

Understanding the Burden Experienced by Caregivers of Older Adults Who Use a Powered Wheelchair: A Cross-Sectional Study

A structured multicomponent group programme for carers of people with acquired brain injury: Effects on perceived criticism, strain, and psychological distress

Long‐term cost of spouses’ informal support for dependent midlife stroke survivors

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