LTCcovid Country Profiles

Responses to 1.12. Personalisation, user voice, choice and satisfaction

The LTCcovid International Living report is a “wiki-style” report addressing 68 questions on characteristics of Long-Term Care (LTC) systems, impacts of COVID-19 on LTC, measures adopted to mitigate these impacts and new reforms countries are adopting to address structural problems in LTC systems and to improved preparedness for future events. It is compiled and updated voluntarily by experts on LTC all over the world. Members of the Social Care COVID-19 Resilience and Recovery project are moderating the entries and editing as needed.

The report can be read by question/topic (below) or by country: COVID-19 and Long-Term Care country profiles.


To cite this report (please note the date in which it was consulted as the contents changes over time):

Comas-Herrera A, Marczak J, Byrd W, Lorenz-Dant K, Patel D, Pharoah D (eds.) and LTCcovid contributors. LTCcovid International living report on COVID-19 and Long-Term Care. LTCcovid, Care Policy & Evaluation Centre, London School of Economics and Political Science. https://doi.org/10.21953/lse.mlre15e0u6s6

Copyright is with the LTCCovid and Care Policy and Evaluation Centre, LSE.


 

Overview

The COVID-19 pandemic has highlighted that most countries have weak mechanisms to ensure that people who use long-term care services have a say on decisions that affect their life, and to guarantee their rights.

The UN Convention on the Rights of Persons with Disabilities states that people have a right to family and relationships.

There are important differences between countries in the extent to which people can choose the type of care and support they use, how and by whom it is delivered.

My Aged Care is the single point of entry for government subsidised care in Australia, operating through a phone line and website. It provides information about the different types of care available, an assessment of needs, provides referrals and support to find service providers and information on the fees people are likely to face.

People who use aged care may choose between different types of aged care services, including care within their own home, community, or in residential aged care settings. Home Care Packages allow people to choose the care bundle that they require, along with their preferred providers and services.

The Royal Commission report found that users of aged-care found the experience of seeking services to be “time-consuming, overwhelming, frightening and intimidating” (Royal Commission 2021, p. 65) and argues that the current My Aged Care system does not provide the personalised information and support that is required for people to be able to make decisions about their own care.

References:

Royal Commission into Aged Care Quality and Safety (2020) Aged care and COVID-19: a special report. Commonwealth of Australia. https://agedcare.royalcommission.gov.au/sites/default/files/2020-12/aged-care-and-covid-19-a-special-report.pdf 

Last updated: February 11th, 2022   Contributors: Joanna Marczak  |  


Individuals receiving LTC may choose between privately or public owned LTC facilities, day services, home support, assisted living, etc. which are all publicly subsidized (source: https://www2.gov.bc.ca/gov/content/health/accessing-health-care/home-community-care/care-options-and-cost). A survey by the Angus Reid Institute found that two-thirds of Canadians (66%) would like the government to take over – or nationalize – LTCFs in order to increase the health and safety outcomes for people requiring long-term care (source: http://angusreid.org/covid19-long-term-care/).

Last updated: February 11th, 2022


Focussing on Ontario, an article by Bardone (2021) traces the antecedents of the COVID-19 crisis in long-term care and documents experiences of frontline staff and family members of residents during the pandemic. They argue that the marginalization of both residents and workers in Ontario’s long-term care system over two decades has eroded possibilities for recognition of their personhood. They also question broader societal attitudes toward ageing, disability, and death that make possible the abandonment of frail older people.

References:

Badone, E. (2021). From Cruddiness to Catastrophe: COVID-19 and Long-term Care in Ontario. Medical Anthropology: Cross Cultural Studies in Health and Illness40(5), 389–403. https://doi.org/10.1080/01459740.2021.1927023

Last updated: February 11th, 2022   Contributors: William Byrd  |  


Municipalities partner with voluntary organizations to roll out community programmes to engage and reach out to older people (Olejaz et al. 2012).

Non-profit actors play mainly a role in advocacy rather than in providing services, although some provide nursing home care (Danish Deaconess Foundation and OK Foundation) while others organize self-support and peer-support activities (DaneAge Association and Danish Alzheimer Association). The DaneAge Association, a voluntary organisation with more than 825 000 members, has the most prominent role among civil society organizations and is involved in advocating the rights and well-being of older people, whilst many volunteers are themselves 65 years or older. The Elders Help Elders network, a partnership among six organizations, is one of the most visible initiatives organizing volunteers with a focus on visiting services, mobility support, shopping, practical assistance in the home, sharing meals and exercise. Non-profit organizations also play an important role in organizing volunteers in nursing homes, hospices and hospitals (WHO, 2019).

Individuals can complain to their municipality if they are not satisfied with the quality of local LTC offer and the services they receive. When a complaint is made,  the municipality must review the decision and if the decision is not changed, their complaint must be sent by municipality to a National Board of Complaints (European Commission, 2021).

References:

European Commission (2021)  2021 Long-Term Care Report Trends, challenges and opportunities in an ageing society. Luxembourg: Publications Office of the European Union,

Olejaz, M.,  Nielsen, A., Rudkjøbing, A., Okkels Birk, H., Krasnik, A., Hernández-Quevedo, C. (2012) Denmark: Health System Review. WHO European Observatory

WHO (2019), ‘Denmark: Country case study on the integrated delivery of long-term care’. Accessed at: https://www.euro.who.int/2019/denmark-country-case-study-on-the-integrated-delivery-of-long-term-care-2019).

 

Last updated: February 11th, 2022


Choice

People who use LTC at home have choice in the sense that once their care needs are assessed they can choose whether they prefer financial or in-kind support. This is embedded in the principles of the LTC insurance, which aims to support people in living a self-determined and independent life. The Care Charter emphasises people’s choice regarding where to live, care and support and their daily routine as well as financial and legal aspects (Der paritätische Gesamtverband, 2018; PKV, n.d.).

In Baden-Württemberg, the task force on LTC recognises the importance of self-determination among people with LTC needs during COVID-19 (Task Force Langzeitpflege und Eingliederungshilfe, n.d.).

References

Der paritätische Gesamtverband (2018) Workshop: Recht auf Selbstbestimmung – auch in Abhängigkeitsverhältnissen. Selbstbestimmung ermöglichen – Was heißt das für Träger in der Pflege? Available at: https://www.der-paritaetische.de/fileadmin/user_upload/Schwerpunkte/Mensch-du-hast-recht/doc/VT2018_WS-Selbstbestimmung-Pflege_ThorstenMittag.pdf (Accessed 31 January 2022).

PKV (n.d.) So funktioniert die Pflegeversicherung. Available at: https://www.pkv.de/wissen/pflegeversicherung/so-funktioniert-die-pflegeversicherung/ (Accessed 31 January 2022).

Task Force Langzeitpflege und Eingliederungshilfe (n.d.) Positionspapier der Task Force Langzeitpflege und Eingliederungshilfe „Selbstbestimmung und soziale Teilhabe trotz Corona gewährleisten“  Available at: https://sozialministerium.baden-wuerttemberg.de/fileadmin/redaktion/m-sm/intern/downloads/Downloads_Gesundheitsschutz/Corona_Positionspapier-TF-Langzeitpflege-EGH_Selbstbestimmung-Teilhabe_20201204.pdf (Accessed 31 January 2022).

Last updated: February 12th, 2022   Contributors: Klara Lorenz-Dant  |  Thomas Fischer  |  Kerstin Hämel  |  


Choice of LTC service is highly dependent on financial means and ability to acquire private LTC services. Eligibility with NII to receive state-funded services is dependent on certain proofs of retirement, disability, need, lack of income.

Last updated: February 11th, 2022


During the pandemic, the right of care home residents to emotional support and social interaction was recognised in a legal document for the first time (Bolcato et al., 2021).

With regards choice, for people whose application for access to services to the Local Health Authority is successful, there is the possibility to choose the provider that they prefer (if the providers have capacity). Social services are normally activated directly by the family. There is no national mechanism to measure satisfaction with care services (European Commission, 2021).

References: 

Bolcato M, Trabucco Aurilio M, Di Mizio G, Piccioni A, Feola A, Bonsignore A, Tettamanti C, Ciliberti R, Rodriguez D, Aprile A. (2021) The Difficult Balance between Ensuring the Right of Nursing Home Residents to Communication and Their Safety. International Journal of Environmental Research and Public Health. 2021; 18(5):2484. https://doi.org/10.3390/ijerph18052484

European Commission (2021). ‘2021 Long Term Care in the EU’ Joint report prepared by the Social Protection Committee (SPC) and the European Commission (DG Empl). Retrieved from: Publications catalogue – Employment, Social Affairs & Inclusion

Last updated: February 4th, 2022   Contributors: Eleonora Perobelli  |  Elisabetta Notarnicola  |  Adelina Comas-Herrera  |  


Once an individual is found to have needs, they are assigned a notional budget to spend on care. In theory, they can choose between competing providers, assisted by a care manager. However the care managers are mostly employed by providers. There are safeguards in place to prevent them referring all their clients to one providers but they are weak and do not fully address the conflict of interest (Curry et al. 2018).

References:

Curry, N., Castle-Clarke, S. Hemmings, N. (2018). ‘What can England learn from the long-term care system in Japan?’ Nuffield Trust Research Report. Retrieved from: https://www.nuffieldtrust.org.uk/research/what-can-england-learn-from-the-long-term-care-system-in-japan

Last updated: February 10th, 2022


In the Netherlands all care homes are required, by law, to have “client councils” that have the right to participate in decisions that affect their daily lives. The members of the councils are residents or their representatives, and the councils have the right to participate in the strategic management of the care homes. They need to be consulted about organisational issues and have a right to consent to decisions that affect the residents’ daily lives. They also have the right to provide advice (Zuidgeest et al. 2011; Kruse at al. 2020).

References: 

Zuidgeest, M. et al. (2011). Legal rights of client councils and their role in policy of long-term care organisations in the Netherlands. BMC Health Service Research  doi: 10.1186/1472-6963-11-215

Kruse, F., van Tol, Vrinzen, C., van der Woerd, O., Jeurissen, P. (2020). The impact of COVID-19 on long-term care in the Netherlands: the second wave. LTCcovid report 

Last updated: February 1st, 2022


LTC Quality and Choice

The Swedish long-term care (LTC) system has been increasingly marketized over the past three decades. This has partly been driven by a want to ensure better choice for users (Meagher & Szebehely, 2013).

Swedish care services are decentralized. As they are organised and managed at a municipal level, there is a lack of standardisation of needs assessment and care processes. This means that there is some variation across local governments in the quality of services provided (source: OECD).

Predictors of Patient Satisfaction

A 2019 study by Spangler et al. investigated aspects of nursing homes in Sweden that are most associated with resident satisfaction. The most important predictor was (smaller) nursing home size (although this may be in part due to the fact that that there is less staff turnover in smaller nursing homes), followed by the activities (both physical and social) on offer to residents. Individualised care was also a factor.

References:

Meagher G., Szebehely M. (2013) Long-Term Care in Sweden: Trends, Actors, and Consequences. In: Ranci C., Pavolini E. (eds) Reforms in Long-Term Care Policies in Europe. Springer, New York, NY. https://doi.org/10.1007/978-1-4614-4502-9_3

Spangler, D., Blomqvist, P., Lindberg, Y. et al. Small is beautiful? Explaining resident satisfaction in Swedish nursing home care. BMC Health Serv Res 19, 886 (2019). https://doi.org/10.1186/s12913-019-4694-9

Last updated: February 12th, 2022


In Scotland 80% of the care workforce work for organisations represented by Scottish Care; a membership-based organization that provides support, training and advocates for the predominantly private workforce.

Last updated: February 10th, 2022   Contributors: Jenni Burton  |  David Bell  |  Elizabeth Lemmon  |  David Henderson  |  


A 2020 study by Dung et al. investigated the quality of life in care homes in Vietnam; measured as a subjective assessment of mental and social well-being. Participants came from public, religion-run, and private nursing homes. Results from the study showed that nursing home residents in Vietnam generally had a moderate level of quality of life; a finding similar to studies conducted in other Asian settings such as Hong Kong and Korea. Findings from the study suggest that the services provided at private and public nursing homes are of similar quality; no significant differences in quality of life were found between the two.

References:

Dung, V., Thi Mai Lan, N., Thu Trang, V., Xuan Cu, T., Minh Thien, L., Sy Thu, N., Dinh Man, P., Minh Long, D., Trong Ngo, P., & Minh Nguyet, L. (2020). Quality of life of older adults in nursing homes in Vietnam: Https://Doi.Org/10.1177/2055102920954710, 7(2).

Last updated: January 3rd, 2022   Contributors: Daisy Pharoah  |  


Contributors to the LTCcovid Living International Report, so far:

this list is regularly updated to reflect contributions to the report, if you’d like to contribute please email a.comas@lse.ac.uk

Elisa Aguzzoli, Liat Ayalon, David Bell, Shuli Brammli-Greenberg, Erica BreuerJorge Browne Salas, Jenni Burton, William Byrd, Sara CharlesworthAdelina Comas-Herrera, Natasha Curry, Gemma Drou, Stefanie Ettelt, Maria-Aurora Fenech, Thomas Fischer, Nerina Girasol, Chris Hatton, Kerstin HämelNina Hemmings, David Henderson, Kathryn Hinsliff-Smith, Iva Holmerova, Stefania Ilinca, Hongsoo Kim, Margrieta Langins, Shoshana Lauter, Kai Leichsenring, Elizabeth Lemmon, Klara Lorenz-Dant, Lee-Fay Low, Joanna Marczak, Elisabetta Notarnicola, Cian O’DonovanCamille Oung, Disha Patel, Martina Paulikova, Eleonora Perobelli, Daisy Pharoah, Stacey Rand, Tine Rostgaard, Olafur H. Samuelsson, Maximilien Salcher-Konrad, Benjamin Schlaepfer, Cheng Shi, Cassandra Simmons, Andrea E. SchmidtAgnieszka Sowa-Kofta, Wendy Taylor, Thordis Hulda Tomasdottir, Sharona Tsadok-Rosenbluth, Sara Ulla Diez, Lisa van Tol, Patrick Alexander Wachholz, Jae Yoon Yi, Jessica J. Yu

This report has built on previous LTCcovid country reports and is supported by the Social Care COVID-19 Resilience and Recovery project, which is funded by the National Institute for Health Research (NIHR) Policy Research Programme (NIHR202333) and by the International Long-Term Care Policy Network and the Care Policy and Evaluation Centre at the London School of Economics and Political Science. The views expressed in this publication are those of the author(s) and not necessarily those of the funders.