When one is sick and two need help: Caregivers’ perspectives on the negative consequences of caring

Ormel, Ilja; Law, Susan; Abbott, Courtney; Yaffe⃰, Mark J.; Saint-Cyr, Marc; Kuluski, Kerry; Josephson, Debbie; Macaulay, Ann C.

doi:10.35680/2372-0247.1179

Cited by 7 publications

(16 citation statements)

References 15 publications

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“… 45 The all-encompassing nature of caring responsibilities resulted in some caregivers of older adults with MCC being house-bound and isolated, as supported by previous literature. 46 Cognitive decline among older adults, often associated with MCC, necessitated extensive care provision and thereby contributed to caregivers’ experience of social isolation. The literature indicates that dementia caregivers are at risk for chronic stress and social isolation and that these risks also contribute to increased risk for physical and mental illness.…”

Section: Discussionmentioning

confidence: 99%

“…Consistent with previous research, caregivers spoke of the struggles to manage caregiving in combination with high workplace expectations, suggesting the need for caregiver friendly workplaces. 46 Caregivers also expressed frustration in having greatly restricted social lives and few opportunities for social participation in their communities. Caregiver needs for support, social connection and recognition of contributions identified in this study are closely related to three key areas of the World Health Organization Global Age-Friendly Cities initiative, specifically social participation, respect and social inclusion, and community support and health services.…”

Section: Discussionmentioning

confidence: 99%

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The complexity of caregiving for community-living older adults with multiple chronic conditions: A qualitative study

et al. 2020

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Background: Older adults with multiple chronic conditions (MCC) rely heavily on caregivers for assistance with care. However, we know little about their psychosocial experiences and their needs for support in managing MCC. The purpose of this study was to explore the experiences of caregivers of older adults living in the community with MCC. Methods: This qualitative study was a secondary analysis of previously collected data from caregivers in Ontario and Alberta, Canada. Participants included caregivers of older adults (65 years and older) with three or more chronic conditions. Data were collected through in-depth, semi-structured interviews. Interview transcripts were coded and analyzed using Thorne’s interpretive description approach. Results: Most of the 47 caregiver participants were female (76.6%), aged 65 years of age or older (61.7%), married (87.2%) and were spouses to the care recipient (68.1%). Caregivers’ experiences of caring for community-living older adults with MCC were complex and included: (a) dealing with the demands of caregiving; (b) prioritizing chronic conditions; (c) living with my own health limitations; (d) feeling socially isolated and constrained; (e) remaining committed to caring; and (f) reaping the rewards of caregiving. Conclusions: Healthcare providers can play key roles in supporting caregivers of older adults with MCC by providing education and support on managing MCC, actively engaging them in goal setting and care planning, and linking them to appropriate community health and social support services. Communities can create environments that support caregivers in areas such as social participation, social inclusion, and community support and health services.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

The complexity of caregiving for community-living older adults with multiple chronic conditions: A qualitative study

et al. 2020

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“…chronic condition of the care recipient, years of caregiving). The original study including the methods have been published [ 6 ].…”

Section: Methodsmentioning

confidence: 99%

“Caregiving is like on the job training but nobody has the manual”: Canadian caregivers’ perceptions of their roles within the healthcare system

et al. 2021

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Background Stepping into the role of an unpaid caregiver to offer help is often considered a natural expectation of family members or friends. In Canada, such contributions are substantial in terms of healthcare provision but this comes at a considerable cost to the caregivers in both health and economic terms. Methods In this study, we conducted a secondary analysis of a collection of qualitative interviews with 39 caregivers of people with chronic physical illness to assess how they described their particular roles in caring for a loved one. We used a model of caregiving roles, originally proposed by Twigg in 1989, as a guide for our analysis, which specified three predominant roles for caregivers – as a resource, as a co-worker, and as a co-client. Results The caregivers in this collection spoke about their roles in ways that aligned well with these roles, but they also described tasks and activities that fit best with a fourth role of ‘care-coordinator’, which required that they assume an oversight role in coordinating care across institutions, care providers and often advocate for care in line with their expectations. For each of these types of roles, we have highlighted the limitations and challenges they described in their interviews. Conclusions We argue that a deeper understanding of the different roles that caregivers assume, as well as their challenges, can contribute to the design and implementation of policies and services that would support their contributions and choices as integral members of the care team. We provide some examples of system-level policies and programs from different jurisdictions developed in recognition of the need to sustain caregivers in their role and respond to such limitations.

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“…In conclusion, despite some policy movement in certain jurisdictions [46], caregivers continue to feel invisible and lack appropriate support for their multiple roles [6,47]. Their welfare, tied closely to the overall success of healthcare systems to provide adequate care for all, should be a concern for policies and programs worldwide [20,48].…”

Section: Discussionmentioning

confidence: 99%

“…chronic condition of the care recipient, years of caregiving). The original study including the methods have been published [6] and are brie y reviewed here.…”

Section: Methodsmentioning

confidence: 99%

“Caregiving is like on the job training but nobody has the manual”: Canadian caregivers’ perceptions of their roles within the healthcare system

Law

Ormel

Babinski

et al. 2020

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Background Stepping into the role of an unpaid caregiver to offer help for a family member or friend is often considered a natural expectation of partners or family members. In Canada, the contributions of caregivers are substantial in healthcare provision but this comes at a considerable cost to the caregivers in both health and economic terms. Methods In this study, we conducted a secondary analysis of a collection of qualitative interviews with 39 caregivers of people with chronic physical illness to assess how they described their particular roles in caring for a loved one. We used a model of caregiving roles, originally proposed by Twigg in 1989, as a guide for our analysis, which specified three predominant roles for caregivers – as a resource, as a co-worker, and as a co-client. Results The caregivers in this collection spoke about their roles in ways that aligned well with these roles, but they also described tasks and activities that fit best with a fourth role of ‘care-coordinator’, which required that they assume an oversight role in coordinating care across institutions, care providers and often advocate for care in line with their expectations. For each of these types of roles, we have highlighted the limitations and challenges they described in their interviews. Conclusions We provide some examples of system-level policy and programs from different jurisdictions developed in recognition of the need to sustain caregivers in their role and respond to such limitations. We argue that a deeper understanding of the different roles that caregivers assume, as well as their challenges, can contribute to the design and implementation of policies and services that would support their contributions and choices as integral members of the care team.

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When one is sick and two need help: Caregivers’ perspectives on the negative consequences of caring

Cited by 7 publications

References 15 publications

The complexity of caregiving for community-living older adults with multiple chronic conditions: A qualitative study

The complexity of caregiving for community-living older adults with multiple chronic conditions: A qualitative study

“Caregiving is like on the job training but nobody has the manual”: Canadian caregivers’ perceptions of their roles within the healthcare system

“Caregiving is like on the job training but nobody has the manual”: Canadian caregivers’ perceptions of their roles within the healthcare system

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