LTCcovid Country Profiles

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

Australia

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  |  

British Columbia (Canada)

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

Ontario (Canada)

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 Illness, 40(5), 389–403. https://doi.org/10.1080/01459740.2021.1927023

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

Denmark

Overall, the aim is for LTC services to be individualised and person-centred. Not least the introduction of reablement has put focus on the need for providing care according to the person’s individual preferences and for her participation in the design of care. However, this goes hand in hand with a prioritisation of the most frail and the provision of personal care over cleaning services.

Users are given a voice in regards to the choice of provider, but mainly as a right to enter and exit service provision. Individuals can also voice a complaint 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).

Users also have a direct voice in the user satisfaction surveys which the municipalities organise, although infrequently and with mainly overall questions. In these user satisfaction surveys, there is little difference between for-profit and public providers. There are no systematic surveys conducted on quality of care, for instance using ASCOT.

The user’s voice is also heard through the non-profit actors who play a main role in advocacy. 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. Another important association is the Danish Alzheimer Association.

Non-profit organizations also play an important role in organizing volunteers in nursing homes, hospices, hospitals and in the home (WHO, 2019). The traditional division of work between public and private providers has changed in regards to the involvement of voluntary organisations and actors also. In general, voluntary services are considered supplementary to the otherwise extensively public welfare system but their importance has grown, not least in the provision of social contact services. Eg. 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. In Denmark, there is in general both high support for and high participation in voluntary activities. The high proportion of people active in voluntary work is not least due to the culture of associations; in Denmark there is a relatively large number of small associations where people become involved offering non-paid assistance and by definition thus voluntary work. A national survey of involvement in voluntary activities from 2013 showed that 35 % of the population was active and especially the older cohorts have over time become more active (Fridberg og Henriksen, 2014). Older people often participate in volunteer activities focussed on other older people, such as visiting services for lonely older people. In this way, volunteering is an important social activity which supplements the public services, but which also has a preventive effect in maintaining activity levels among the older volunteers themselves. It Is not uncommon for older people offering voluntary services to report an increase in quality of life and health, which shows that the outcome is not only for the users of the services but also for those providing them (Ældremobilisering, 2012).

References:

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

Fridberg, T. and Henriksen L.S. (2014) Udviklingen i frivilligt arbejde 2004-2012. København: SFI. https://www.vive.dk/media/pure/5209/276950

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).

Ældremobilisering (2012) Ældre hjælper Ældre – En gevinst for samfundet og delta-gerne. København: Ældremobilisering.

Last updated: June 28th, 2023

France

The French care system has been described as complex to navigate, with consequences on user choice and satisfaction as a result with poor access to information and complex procedures to access care.  

A government-commissioned report 2019 found a generally negative view of the care sector in relation to ageing, with those living in care homes reporting a poor quality of life and a gap between the cost of care and the quality of care received (source). The report finds that long-term care in France has too much focus on illness and medical care rather than care that supports people to live independent and fulfilling lives. 40% of French citizens with a relative potentially in need of residential care believe the move to a home will be done against the relative’s wishes; 80% of French citizens consider that entering residential or nursing care means losing choice and independence. 

Last updated: October 22nd, 2024   Contributors: Alis Sopadzhiyan  |  Camille Oung  |  

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  |  

Israel

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

Italy

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  |  

Japan

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

Netherlands

In the Dutch long-term care system, the rights of clients have been strengthened by legislation. The ‘Participation by clients of Care Institutions Act (WMCZ)’ mandated every care organization to have a client advisory council: whose members are recruited from the users of the care organization and who will represent them. Care organisations assist client councils by providing resources such as office space, meeting rooms, budget, etc. More specifically, client councils have the legal rights to have meetings with management about organisations’ policy, to receive information, to request an investigation into mismanagement, to be consulted, and to consent. The right to be consulted permits client councils to give their advice regarding issues on changing the aim and policy of the organisation, merger with another organisation, and financial matters, but the management can disregard the advice provided by councils. The right to consent means that client councils have to approve plans concerning issues that affect the daily living of clients (e.g. in relation to diet, safety, recreation and leisure, hygiene, the quality of healthcare for clients, changes to the complaints procedure. The care organisation management cannot perform changes regarding these issues without approval from a relevant client council (Zuidgeest et al. 2011).  In 2019 the earlier WMCZ act was replaced by the act ‘WMCZ 2018’, which aimed to expand the rights for client councils to truly participate in organisational decisions regarding matters that influence the clients’ daily lives. Client councils have the right to consent to these decisions as well as the right to provide solicited and unsolicited advice (Kruse et 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: January 6th, 2023

Sweden

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

Scotland (UK)

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  |  

Vietnam

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  |