Words Matter: The Language of Family Caregiving

Stall, Nathan M.; Campbell, Angus; Reddy, Madhuri; Rochon, Paula A.

doi:10.1111/jgs.15988

Cited by 37 publications

(47 citation statements)

References 12 publications

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“…Importantly, although the term family caregiver is widely used, it is important to recognize that approximately 15% of all caregivers are not related to their care recipients, including some who may be privately hired. 7 The importance of identifying family caregivers is that they are not accessing the nursing home primarily for social reasons, but rather to provide services and care such as assistance with feeding, medical decision-making, and management of responsive behaviors among residents living with dementia. 13 Although the definition of family caregiver has been operationalized in various ways, in a resident-centered and caregiver-partnered long-term care system, residents must have the sole authority and autonomy to determine who is essential to support them in their care; substitute decision-makers should make this determination for incapable residents.…”

Section: Guiding Principles and Planning Assumptions About Visitor Policies And Accessmentioning

confidence: 99%

Finding the Right Balance: An Evidence-Informed Guidance Document to Support the Re-Opening of Canadian Nursing Homes to Family Caregivers and Visitors during the Coronavirus Disease 2019 Pandemic

Stall

Johnstone

McGeer

et al. 2020

Journal of the American Medical Directors Association

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During the first few months of the COVID-19 pandemic, Canadian nursing homes implemented strict no-visitor policies to reduce the risk of introducing COVID-19 in these settings. There are now growing concerns that the risks associated with restricted access to family caregivers and visitors have started to outweigh the potential benefits associated with preventing COVID-19 infections. Many residents have sustained severe and potentially irreversible physical, functional, cognitive, and mental health declines. As Canada emerges from its first wave of the pandemic, nursing homes across the country have cautiously started to reopen these settings, yet there is broad criticism that emerging visitor policies are overly restrictive, inequitable and potentially harmful. We reviewed the nursing home visitor policies for Canada’s ten provinces and three territories as well as international policies and reports on the topic to develop evidence-informed, data-driven and expert-reviewed guidance for the re-opening of Canadian nursing homes to family caregivers and visitors.

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Section: Guiding Principles and Planning Assumptions About Visitor Policies And Accessmentioning

confidence: 99%

Finding the Right Balance: An Evidence-Informed Guidance Document to Support the Re-Opening of Canadian Nursing Homes to Family Caregivers and Visitors during the Coronavirus Disease 2019 Pandemic

Stall

Johnstone

McGeer

et al. 2020

Journal of the American Medical Directors Association

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“…Family caregiving was defined in the questionnaire as "providing unpaid care for a person in the close environment, excluding care for healthy children". This could include family members, as well as friends or neighbors (23), but we prefer to use the term family caregiver throughout the manuscript as this covers the large majority of caregivers.…”

Section: Measurementsmentioning

confidence: 99%

Associations of combining paid work and family care with gender-specific differences in depressive symptoms among older workers and the role of work characteristics

Bijnsdorp¹,

Beek²,

Groenou³

et al. 2022

Scand J Work Environ Health

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Associations of combining paid work and family care with gender-specific differences in depressive symptoms among older workers and the role of work characteristics by Bijnsdorp FM, van der Beek AJ, Broese van Groenou MI, Proper KI, van den Heuvel SG, Boot CRL Hybrid mixed-models disentangled between-and within-person effects of providing family care on depressive symptoms in older employees. Starting family care increased depressive symptoms over time for employed women and men (within effect). No gender differences in associations of providing family care with mental health were found (between effect). Work resources may protect mental health of older working caregivers.

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“…32 Some have argued that the term 'family caregiver' should be preferred over 'informal caregiver' on the ground that caregivers may find the latter invalidating and belittling. 33 Although we acknowledge the importance of terminology around this complex issue, this umbrella review will use the term 'informal caregiving' to explicitly include nonfamilial caregivers in its scope. Older care receivers will be defined by chronological age or as having an agerelated disease or syndrome such as dementia, cancer, stroke, Parkinson's disease, heart failure, multimorbidity and/or frailty.…”

Section: Open Accessmentioning

confidence: 99%

Effectiveness of interventions to address the negative health outcomes of informal caregiving to older adults: protocol for an umbrella review

et al. 2021

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IntroductionInformal (unpaid) caregivers play an essential role in caring for older people, whose care needs are often not fully met by formal services. While providing informal care may be a positive experience, it can also exert a considerable strain on caregivers’ physical and mental health. How to best support the needs of informal caregivers remains largely debated. This umbrella review (review of systematic reviews) aims to evaluate (1) whether effective interventions can mitigate the negative health outcomes of informal caregiving, (2) whether certain types of interventions are more effective than others, (3) whether effectiveness of interventions depends on caregiver/receiver, context or implementation characteristics and (4) how these interventions are perceived in terms of acceptability, feasibility and added value.Methods and analysisWe will include systematic reviews of primary studies focusing on the effectiveness of interventions (public or private, unifaceted or multifaceted, delivered by health or social care professionals or volunteers) aimed at reducing the impact of caregiving on caregivers’ physical or mental health. This will also include quantitative and qualitative syntheses of implementation studies. The literature search will include the following databases: Medline, CINAHL, PsycINFO and Web of Science. A key informant-guided search of grey literature will be performed. Quality appraisal will be conducted with the AMSTAR-2 checklist for quantitative reviews and with an ad hoc checklist for qualitative syntheses. Narrative and tabular summaries of extracted data will be produced, and framework synthesis will be employed for weaving together evidence from quantitative studies in effectiveness reviews with findings on implementation from qualitative studies.Ethics and disseminationThis umbrella review will use data from secondary sources and will not involve interactions with study participants; it is thus exempt from ethical approval. Results will be presented at international conferences and will be published in a peer-reviewed journal.PROSPERO registration numberCRD42021252841.

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Words Matter: The Language of Family Caregiving

Cited by 37 publications

References 12 publications

Finding the Right Balance: An Evidence-Informed Guidance Document to Support the Re-Opening of Canadian Nursing Homes to Family Caregivers and Visitors during the Coronavirus Disease 2019 Pandemic

Finding the Right Balance: An Evidence-Informed Guidance Document to Support the Re-Opening of Canadian Nursing Homes to Family Caregivers and Visitors during the Coronavirus Disease 2019 Pandemic

Associations of combining paid work and family care with gender-specific differences in depressive symptoms among older workers and the role of work characteristics

Effectiveness of interventions to address the negative health outcomes of informal caregiving to older adults: protocol for an umbrella review

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