Human rights and care homes for older people: a typology of approaches from academic literature as a starting point for activist scholarship in human rights and institutional care

Green, Caroline Emmer De Albuquerque; Tinker, Anthea; Manthorpe, Jill

doi:10.1080/13642987.2021.1961753

Cited by 6 publications

(2 citation statements)

References 29 publications

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“…While arrangements varied between countries, restrictions were often extensive and prolonged (Barber et al, 2022). The extent of these restrictions, relative to those in wider society, has drawn fresh attention to rights-based approaches to care, in which care home residents are viewed not just as passive recipients of care but as active rights-holders (Emmer De Albuquerque Green et al, 2022) with the concept of autonomy fundamental to such approaches.…”

Section: Introductionmentioning

confidence: 99%

Family carers’ experiences of care home visiting restrictions during the COVID-19 pandemic: a relational autonomy perspective

Dixon,

Stubbs

2024

Ageing and Society

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Care home residents were vulnerable to severe effects from Covid-19 infection and experienced high mortality, especially early in the pandemic. In response, many countries introduced visiting restrictions to limit transmission. These often proved extensive and prolonged, drawing fresh attention to issues of autonomy and human rights in long-term care. We conducted in-depth interviews with 27 family carers in England with relatives living in a care home during the pandemic. Adopting a relational autonomy lens, conceptualised using the capability approach, we examined how family carers considered their relatives’ capabilities to have been impacted by visiting restrictions and how relational support could be strengthened. Family carers were concerned for their relative’s fundamental capabilities, including physical health, emotional well-being, and feeling connected to significant others. Capability deprivations were associated with family separation, ‘adapted’ visits that were inappropriate for their relative’s needs, and lack of opportunity for family carers’ to provide emotional support, help staff identify their relative’s emotional and physical needs, monitor care standards or advocate for their relative. Optimising relational support during a public health emergency requires effective collaboration between care homes and family carers. Specific measures include (1) ensuring there is clarity, a sense of shared purpose, clear accountability and confidence in visiting restrictions, (2) providing family carers regular, personalised updates about their relative using a range of digital communication tools, (3) allowing choice about visiting arrangements where possible, and ensuring visits are appropriate for residents with dementia and (4) ensuring that family carers feel welcomed, involved and enabled to resume in-person visits at the earliest opportunity. Consultation with care homes, families and residents, and workforce and digital readiness should be prioritised.

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Section: Introductionmentioning

confidence: 99%

Family carers’ experiences of care home visiting restrictions during the COVID-19 pandemic: a relational autonomy perspective

Dixon,

Stubbs

2024

Ageing and Society

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“…Although focused on Australia, the article has broader relevance. The article provides an empirical evidence-base for reparations in many other nations in which people living with dementia also experience human rights violations (see, e.g., De Albuquerque Green et al, 2022; Hardwick et al, 2022). Reparations is an important aspect of responding to calls for a fundamental reimagining of the future of LTC institutions that involves deinstitutionalisation (see, e.g., Kontos et al, 2021; Herron et al, 2021; Quinn and Campbell, 2020) and growing recognition in United Nations and regional international human rights systems of the need for equal access to justice and remedies for people with disability and older people (see, e.g., Committee on the Rights of Persons with Disabilities, 2022; Devandas-Aguilar, 2020; Mahler, 2022; Quinn and Doron, 2021; Ruškus, 2023).…”

Section: Introductionmentioning

confidence: 99%

Reparations for people living with dementia: Recognition, accountability, change, now!

Steele,

Swaffer,

Siciliano

et al. 2023

Dementia

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There is a significant and longstanding problem of harm to people living with dementia in long term care institutions (‘LTC institutions’, referred to by others as ‘care homes’, ‘nursing homes’, ‘long term care’, ‘residential aged care facilities’), along with a failure to redress the harm or hold people accountable for this harm. This article reports on an Australian project that found reparations must be a response to harm to people living with dementia in residential aged care. Using a disability human rights methodology, focus groups were conducted with people living with dementia, care partners and family members, advocates and lawyers to explore perspectives on why and how to redress harm to people living with dementia in Australian LTC institutions. Researchers found four key themes provide the basis for the necessity and design of a reparative approach to redress – recognition, accountability, change, now. The article calls for further attention to reparations in dementia scholarship, with a particular focus on the role that can be played in the delivery of reparations by the LTC industry, dementia practitioners, and dementia scholars. Ultimately, this article provides a new understanding of responses to violence, abuse, neglect and other harms experienced by people living with dementia in LTC institutions, which centres justice, rights, and transformative change.

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Addressing healthcare vulnerabilities in nursing homes

Komorowski,

Demmer,

Auer

et al. 2024

Wien Klin Wochenschr

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Summary Background Current demographic changes bear challenges for national care systems due to higher life expectancy of older citizens. Largely cut off from society, nursing home residents are at risk for violence, neglect, and other potential human rights violations. This study aimed to investigate healthcare vulnerabilities in nursing homes and evaluate the Austrian National Preventive Mechanism (NPM). Methods Between 2017 and 2019, 55 monitoring visits were conducted in 32 nursing homes. Study outcomes from two Austrian provinces included data on infrastructure, occupancy, staffing, resident’s demographics and medical conditions, as well as measures related to the functioning of the NPM. Results Accessibility with mobility aids was sufficient in 87%, but assistance for persons with visual or hearing impairments solely in 20–40% of the institutions. An understaffing with nursing assistants (−5.2 full-time equivalents in Carinthia) and home helpers (−1.6 in Carinthia and Styria) was present. Less than 20% of the personnel received advanced training related to dementia and neuropsychiatric care. While 50% of the residents were diagnosed with a psychiatric disorder, approximately 36% received support from an appointed legal guardian. Of the monitoring visits 58.1% were conducted due to anonymous complaints and urgent referrals. The median processing times of the NPM and the provincial governments exceeded 250 days. Conclusion Human rights monitoring reveals critical aspects in nursing home care, including insufficient accessibility, understaffing and inadequate training. Although the authorities’ handling times hinder prompt responses, the NPM may foster systemic improvements and accountability within nursing homes.

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Human rights and care homes for older people: a typology of approaches from academic literature as a starting point for activist scholarship in human rights and institutional care

Cited by 6 publications

References 29 publications

Family carers’ experiences of care home visiting restrictions during the COVID-19 pandemic: a relational autonomy perspective

Family carers’ experiences of care home visiting restrictions during the COVID-19 pandemic: a relational autonomy perspective

Reparations for people living with dementia: Recognition, accountability, change, now!

Addressing healthcare vulnerabilities in nursing homes

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