LTCcovid Country Profiles

Responses to 1.11. 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, 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.

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. “My Aged Care” is the single point of entry for Australian government subsidized care. It is a virtual service, without face-to-face assistance, and it was found to decrease user satisfaction due to less personalized support. Overall, a report by Royal Commission published in 2021 noted that users of aged care found the experience of seeking out services to be time-consuming, overwhelming, and intimidating.

Last updated: December 22nd, 2021   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: November 6th, 2021


Focussing on Ontario, a published article 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 aging, disability, and death that make possible the abandonment of the frail elderly.

Source:

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: November 30th, 2021   Contributors: William Byrd  |  


All municipalities partner with voluntary organizations to roll out community programmes to engage and reach out to older people (source: https://www.euro.who.int/__data/assets/pdf_file/0004/160519/e96442.pdf) .

Non-profit actors play mainly a role in advocacy (rather than in providing services), although some are active in nursing home care (Danish Deaconess Foundation and OK Foundation) while others are taking a lead role in organizing self-support and peer-support activities in the community (DaneAge Association and Danish Alzheimer Association). The DaneAge Association, a voluntary association with more than 825 000 members, has the most prominent role among civil society organizations. The DaneAge Association is heavily involved in advocating the rights and well-being of older people and is recognized as a stable partner in the political dialogue, whilst many volunteers are themselves 65 years or older. The Elders Help Elders network, a partnership among six older people organizations, is one of the most visible initiatives organizing older people volunteers for supporting other older people throughout Denmark. Most volunteering activities through the network focus on visiting services, mobility support, shopping, practical assistance in the home, sharing meals, exercise, walking, biking and telephone security services. Non-profit organizations also play a crucial role in organizing volunteers in nursing home, hospices and hospitals (https://www.euro.who.int/en/health-topics/Life-stages/healthy-ageing/publications/2019/denmark-country-case-study-on-the-integrated-delivery-of-long-term-care-2019).

Citizens can complain to their municipality if they are not satisfied with the quality of their LTC offer and the package of services they receive. If a citizen complains about a decision the municipality must review the decision and if the municipality does not change the decision their complaint must be sent to a National Board of Complaints  (source: Publications catalogue – Employment, Social Affairs & Inclusion – European Commission (europa.eu).

Last updated: November 9th, 2021


LTC users living at home have choice in a 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 Charta emphasises people’s choice regarding where to live, care and support and their daily routine as well as financial and legal aspects (source: https://www.der-paritaetische.de/fileadmin/user_upload/Schwerpunkte/Mensch-du-hast-recht/doc/VT2018_WS-Selbstbestimmung-Pflege_ThorstenMittag.pdf; https://www.pkv.de/wissen/pflegeversicherung/so-funktioniert-die-pflegeversicherung/). The task force on LTC recognises the importance of self-determination among people with LTC needs during COVID-19 (source: https://sozialministerium.baden-wuerttemberg.de/fileadmin/redaktion/m-sm/intern/downloads/Downloads_Gesundheitsschutz/Corona_Positionspapier-TF-Langzeitpflege-EGH_Selbstbestimmung-Teilhabe_20201204.pdf).

Last updated: September 2nd, 2021


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: September 2nd, 2021


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.

With regards choice, for people whose application for access to services to the Local Health Authority is successful (see question 1.03), 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.

Sources:

Bolcato M, Trabucco Aurilio M, Di Mizio G, Piccioni A, Feola A, Bonsignore A, Tettamanti C, Ciliberti R, Rodriguez D, Aprile A. 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 report. Country provides Vol. 2. Joint report prepared by the Social Protection Committee (SPC) and the European Commission (DG Empl).

Last updated: November 23rd, 2021   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. (source: What can England learn from the long-term care system in Japan? ).

Last updated: November 25th, 2021


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 (source: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3181203/ and https://ltccovid.org/wp-content/uploads/2020/11/COVID-19-Long-Term-Care-situation-in-the-Netherlands-_-the-second-wave-25-November-2020-2.pdf).

Last updated: September 2nd, 2021


Ensuring choice for service users is an important part of the Swedish system, which is partly driving marketisation of services (sources: https://ec.europa.eu/info/sites/info/files/file_import/joint-report_se_en_2.pdf; https://rd.springer.com/chapter/10.1007/978-1-4614-4502-9_3).

Last updated: November 23rd, 2021


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: December 5th, 2021   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, Jorge 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, Stefania Ilinca, Margrieta Langins, Shoshana Lauter, Kai Leichsenring, Elizabeth Lemmon, Klara Lorenz-Dant, Lee-Fay Low, Joanna Marczak, Elisabetta Notarnicola, Cian O’DonovanCamille Oung, Disha Patel, 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, 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.