Adult daughters providing post-stroke care to a parent: a qualitative study of the impact that role overload has on lifestyle, participation and family relationships

Bastawrous, Marina; Gignac, Monique A. M.; Kapral, Moira K.; Cameron, Jill I.

doi:10.1177/0269215514552035

Cited by 40 publications

(67 citation statements)

References 28 publications

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“…Like in previous studies, we found that the caregiving role leads to high levels of caregiver burden [36,37]. When reflecting on the time prior to the intervention, caregivers demonstrated strained relationships, decreased participation in valued activities and reduced physical activity [21]. Interestingly, caregivers who did not attend the MY-OT intervention saw little to no change in caregiver burden or positive aspects of caregiving.…”

Section: Discussionsupporting

confidence: 80%

“…The ZBI is a 22-item questionnaire on which caregivers provide ratings (0-4, "never" to "almost always") about their perceptions of burden in their caregiving relationship. Total potential scores range from 0-88, with the following interpretations: little or no burden (0-20), mild to moderate burden (21)(22)(23)(24)(25)(26)(27)(28)(29)(30)(31)(32)(33)(34)(35)(36)(37)(38)(39)(40), moderate to severe burden (41-60), severe burden (61-88). Items generally address the ideas of personal strain and role strain related to the impact of caregiving in the caregiver's daily life [30].…”

Section: Quantitative Data Collectionmentioning

confidence: 99%

“…Preliminary research shows that within the caregiver dyad, self-management can contribute to both the caregiver and care recipient's sense of self-efficacy, improved quality of life, and engagement in daily activities [19,20]. Occupational therapy (OT) has been shown to improve caregivers' management of their multiple roles and participation in valued activities [21,22] through self-management and group therapy interventions across environments [23]. Specifically, an OT-led group format can provide group cohesiveness, instil hope, and promote interpersonal learning [24].…”

Section: Introductionmentioning

confidence: 99%

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A Multi-modal Intervention after Stroke: The Caregiver Experience

Hinsey¹,

Atler²,

Fruhauf³

et al. 2018

OBM Integr Complement Med

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Background: A fall prevention intervention was delivered to people with chronic stroke (Merged Yoga and Occupational Therapy intervention-MY-OT). All caregivers were invited to also attend the 8-week intervention and were included in these analyses. Methods:The aim of this study was to examine changes in caregiver burden, positive aspects of caring, and caregiver's experiences after participating in the MY-OT intervention. This was a secondary data analyses and the purpose of this mixed-methods study was to quantitatively assess changes in caregiver burden (Zarit Burden Interview) and positive aspects of caregiving (Positive Aspects of Caregiving scale) and qualitatively explore the experience of the caregivers who attended the intervention. Focus groups and individual interviews with the caregivers were completed, transcribed, and reviewed. Qualitative data were analysed to identify emergent themes that described the caregiver experience. Results: The average age of nine caregivers was 64.86 years old and most caregivers were female (66%). Caregivers who attended the MY-OT intervention (n=6) demonstrated less caregiver burden (47% decrease) and more positive aspects of caregiving (26% increase) than those who did not attend (n=3). Four qualitative themes emerged and included: positive changes in daily life; being in the present; new learning opportunities for the dyad and individual; and building a sense of community. Conclusions:In this small sample of caregivers, yoga and occupational therapy appeared helpful in reducing caregiver burden, increasing positive aspects of caregiving, and contributing to positive experiences over all. Future research studies should be developed to include the caregiver and address the caregiver dyad.

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Section: Discussionsupporting

confidence: 80%

Section: Quantitative Data Collectionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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A Multi-modal Intervention after Stroke: The Caregiver Experience

Hinsey¹,

Atler²,

Fruhauf³

et al. 2018

OBM Integr Complement Med

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“…These adjustments impacted various aspects of life, from everyday routines, participation in occupations, and personal time. Examples of these adjustments included changes to the physical household environment, (Silva‐Smith, ), work schedules (Barbic, Mayo, White, & Bartlett, ; Silva‐Smith, ) living arrangements, (Bastawrous, Gignac, Kapral, & Cameron, 2; Coombs, ) and everyday routines (Silva‐Smith, ).…”

Section: Resultsmentioning

confidence: 99%

“…In addition, caregivers reported changes to their abilities to participate in meaningful activities. Many described having to reduce involvement in leisure activities, such as exercising, (Bastawrous et al, ; Cao et al, ; Silva‐Smith, ), playing sports (Barbic et al, ; Bastawrous et al, ; Silva‐Smith, ) and travelling (Bäckström & Sundin, ; Barbic et al, ; Cao et al, ; Johnson, ; Silva‐Smith, ). Others discussed limited interactions with family and friends, (Buschenfeld et al, ; El Masry et al, ; Green & King, ; Saban & Hogan, ; Chow & Tiwari, ), often leading to feelings of social isolation (Buschenfeld et al, ; Kitzmüller, Häggström, Asplund, & Gilje, ; Chow & Tiwari, ).…”

Section: Resultsmentioning

confidence: 99%

“Caregiving is a full‐time job” impacting stroke caregivers' health and well‐being: A qualitative meta‐synthesis

Kokorelias

Santos

et al. 2019

Health Soc Care Community

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Family caregivers contribute to the sustainability of healthcare systems. Stroke is a leading cause of adult disability and many people with stroke rely on caregiver support to return home and remain in the community. Research has demonstrated the importance of caregivers, but suggests that caregiving can have adverse consequences. Despite the body of qualitative stroke literature, there is little clarity about how to incorporate these findings into clinical practice. This review aimed to characterise stroke caregivers' experiences and the impact of these experiences on their health and well‐being. We conducted a qualitative meta‐synthesis. Four electronic databases were searched to identify original qualitative research examining stroke caregivers' experiences. In total, 4,481 citations were found, with 39 studies remaining after removing duplicates and applying inclusion and exclusions criteria. Articles were appraised for quality using the Critical Appraisal Skills Programme (CASP), coded using NVivo software, and analysed through thematic synthesis. One overarching theme, ‘caregiving is a full‐time job’ was identified, encompassing four sub‐themes: (a) restructured life, (b) altered relationships, (c) physical challenges, and (d) psychosocial challenges. Community and institution‐based clinicians should be aware of the physical and psychosocial consequences of caregiving and provide appropriate supports, such as education and respite, to optimise caregiver health and well‐being. Future research may build upon this study to identify caregivers in most need of support and the types of support needed across a broad range of health conditions.

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mHealth applications to support caregiver needs and engagement during stroke recovery: A content review

Lobo

Frølich

Kensing

et al. 2020

Research in Nursing & Health

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Caregiving in stroke results in severe physical, psychological, and social impacts on the caregiver. Over the past few years, researchers have explored the use of mHealth technologies to support healthcare-related activities due to their ability to provide real-time care at any given place or time. The purpose of this content review is to investigate mHealth apps in supporting stroke caregiving engagement based on three aspects: motivation, value, and satisfaction. We searched app stores and repositories for apps related to stroke caregiving published up to September 2020. Extracted apps were reviewed and filtered using inclusion criteria, and then downloaded onto compatible devices to determine eligibility. Results were compared with evidence-based frameworks to identify the ability of these apps in engaging and supporting the caregiver. Forty-seven apps were included in this review that enabled caregivers to support their needs, such as adjustment to new roles and relationships, involvement in care and caring for oneself using several different functionalities. These functionalities include information resources, risk assessment, remote monitoring, data sharing, reminders and so on. However, no single app was identified that focuses on all aspects of stroke caregiving. We also identified several challenges faced by users through their reviews and the factors associated with value and satisfaction. Our findings can add to the knowledge of existing mHealth technologies and their functionalities to support stroke caregiving needs, and the importance of considering user engagement in the design. They can be used by developers and researchers looking to design better mHealth apps for stroke caregiving.

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Adult daughters providing post-stroke care to a parent: a qualitative study of the impact that role overload has on lifestyle, participation and family relationships

Cited by 40 publications

References 28 publications

A Multi-modal Intervention after Stroke: The Caregiver Experience

A Multi-modal Intervention after Stroke: The Caregiver Experience

“Caregiving is a full‐time job” impacting stroke caregivers' health and well‐being: A qualitative meta‐synthesis

mHealth applications to support caregiver needs and engagement during stroke recovery: A content review

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