ACTION

Sweden

The key “selling” point of the EU ACTION proposal was to maintain or enhance the independence and everyday quality of life of older people, with chronic long-standing conditions, and of the quality of life of their informal carers. Moreover the service focuses on the call centre care practitioners’ job satisfaction and on the care quality provided to older people in municipalities. This latter is carried out in partnership with care recipients and their carers to empower them at home rather than arriving late to a crisis and taking over the situation. Modern, easily accessible ICT was an innovative medium for securing these overall aims.

The 1997 policy drivers were mainly demographic changes: an ageing population, limited availability of young adults willing to care for dependent older people; increased informal carers (most often unpaid family members) of dependent aged relatives, ageing in place and older peoples’ e-inclusion. The latter two are even more relevant, as finite economic resources led to an increased interest in community care and “ageing in place” policies focusing on families’ role to support their frail older relatives. At the same time in the mid-nineties, EU policies began to be interested in older and functionally limited peoples’ active inclusion in the new information society, because of the rapid use of internet in workplaces, in social and in private life.

ACTION was set up by a consortium of researchers, care providers and voluntary organisations from the University of Sheffield, UK together with universities in Northern Ireland, Coimbra, Portugal and the University of Borås, Sweden. The project was funded from the EC’s4. Framework Funding within the TIDE initiative and co-ordinated by the University of Borås.

The original ACTION prototype developed from a collaboration among five European countries that resulted in positive results. So there are favourable conditions to transfer it to other European countries.

 Care Recipients
 Informal carers
 Paid assistants
 Formal carers

Not available

 Independent Living
 Information and learning for carers
 Personal Support and Social Integration for carer
 Care coordination

The services provided through the use of ICTs increase care quality through support to carers, their quality of life, participation, individual and group training for carers and care recipients’ independent living. Services offer user-oriented, easily accessible, ”state-of-the-art” information, education and support to older people and their informal carers by means of the following four and complementary service lines:

1. Information and training programme (multimedia programme)

Current daily caring information and compassion in the following areas: personal transference, incontinence, food and beverages, stroke, dementia, wounds, and palliative caring during terminal stages. The package also contains a training-and-relaxation programme, information on available supports, aids and devices. Another programme for informal carers explains strategies on how to better manage giving advice and sharing experiences with other carers’ who face similar situations

2. The ACTION call centres

A local ACTION call centre is provided in all municipalities who are clients of the service. Call centre personnel are nurses and aid consultants, with a long experience, who introduce families and staff members to the service and support them afterwards.

3. ACTION-station with videophone

This facility allows reading programmes and access to the internet and email. By means of the videophone users speak directly to the staff at the ACTION centres. The videophone also allows users to develop social networks with other users.

4. Training

Continuous training and supervision are provided for all staff and for municipality contacts. Users are instructed on how to use the equipment, read and search for information and training programmes on how to use the videophone, email and the internet. In addition, there is support and assistance for installing ACTION and continuously available statistics on the service use.

Such services are meant to provide:

• An information caring database with drawings, pictures and videoclips on daily caring activities, available services and coping strategies;
• physical and cognitive training and relaxation programmes;
• support and social company from other ACTION users via the integrated videophone system;
• support and advice from skilled call centre care practitioners via the videophone system;
• individual and group computer education on how to use the ICT service;
• comprehensive education, ongoing supervision and certification programme for care practitioners working at ACTION call centres.

A client application installed in an ordinary personal computer and an internet connection.

Users don’t need any prior computer skills as the service is very easy to use. Personnel offers comprehensive education to novice users on how to use ACTION.

Both public and private

Public service funding: Government, Regional, Local Authorities, non-profit public entities

• Public service funding: local Authorities (municipalities).

• Public research funding: national, European and international funds for research, development and implementation of innovative initiatives.

Private out of pocket: users pay the service by themselves

Not available

ACTION consists of two companies: ACTION Caring AB, the research company REACTION Centre AB and Telia Sonera.

ACTION Caring AB is currently owned, in equal parts, by the holding company of University of Boras and REACTION Centre AB. Collaborating partners are the University College of Borås, the municipalities of Borås and Mark, the primary healthcare centres and Södra Älvsborgs Hospital. Apart from the above partners, the project is carried out with the active participation of Chalmers University, the School of Mission and Theology in Stavanger, the Dementia Association (the National Association for the Rights of the Demented in Sweden), the Dementia Associations in Borås and Mark, Stroke (the National Association against Brain-Vessel Illnesses) and the Aphasia Association of Borås.

The provider is the company, ACTION Caring Ltd Sweden. Its service is part of the social care services in several municipalities, so user pays an average fee of €20/month. Users pay for broadband themselves (€20/month) in most municipalities. The company staff is partially employed by the University.

The improvement strategy is based on ongoing research and upgrades to fulfill users’ needs (i.e., older people, their informal carers and all caring or ICT staff ). Thus developments focus on continuous awareness through raising initiatives with municipality staff working with older people and crucially, with assessors who evaluate ACTION users’ and decide allocation of services. A strategic tool is the direct involvement of care managers in the implementation process to gain and maintain decision makers’ support.

The business strategy was developed in co-operation with municipalities and relies on the following: the competence of all staff in health and social care for older people and informal carers, ICT and its implementation, user sensitive design methods, teaching and supervision, R&D, strategies, infrastructure, trading practices and operations. The business model is efficient, well functioning and allows municipalities to know the services costs. It was designed so that ICT departments of municipalities didn’t need to be involved.

The main sustainability barriers have been the negative attitudes and general scepticism of health and social care practitioners, care managers and politicians regarding ICT services for health and social care for older people. Most municipalities do not want to significantly invest in technology care services, so they test out such services on a small number of users making it difficult to build up a critical mass of users to provide evidence to offer the service on a wider level. Moreover there aren’t any clear national, regional and local policies pushing to use ICT health and social care solutions for older people. So national ICT strategies are still focused on health care delivered in hospitals with less emphasis on that provided by the municipalities. Therefore, the likelihood of sustained future funding is uncertain. The service needs a strong business plan as there are no limits, potentially, to increase users thanks to the strong database and consolidated platform for video conferencing.

On the other hand the EU and early Swedish projects highlighted the need to focus equally on caring and enhance the quality of the caring relationship between primary family carers and care recipients. This latter could create positive prospects for future funding.

Municipalities sometimes fund the service with time-limited financial support, such as a development grant and/or governmental stimulus money. As a consequence, income has predominantly depended on the state. This is likely to change, due to the current trend to allow the companies and civil organisations participate in home care and long term care services. Moreover current service users are unwilling to pay for the service, because they think municipalities should fund the initiative.

A key opportunity for sustainability is the cost savings of municipalities by enabling older people to stay at home rather than placing them in a nursing home.

The sustainability plan includes evaluations as a requirement from its fund holder to ensure the usability and acceptability of the service, extend it to other users and prove its effectiveness on individual informal carers and municipalities. So the initial EU project was evaluated by experts and later by ACTION research team for its later implementation in other municipalities.

Despite the lack of sure future public funding, thanks to the overall positive effect on users’ quality of life and on caring families’ service acceptability, as well as on municipal cost-savings, further sustainability changes could turn up to become positive. For this reason also a service change and development is planned to overcome the present gaps.

Therefore, despite all the preceding doubts, the future sustainability and funding of ACTION could improve as the service is judged to be a more effective way of working to remotely provide “non hands-on” care.

Not available

 Authorities
 Private Care Sector
 Health and Social Care Systems
 Third Sector
 Private Companies

Not available

Some volunteer organisations from the University of Sheffield (UK) were members of the consortium which set-up ACTION.

 Informal Carers
 Health Professionals
 Social Care Professionals
 Privately-Hired Care Assistants (inc. Migrant Care Workers)
 Volunteers

Care practitioners and researchers are partly employed by the university and by ACTION Caring Ltd. Sweden. All personnel are experts in health and social care, ICT, teaching and supervision, implementation of ICT services for older people and their family carers, R&D and evaluation within all of these areas.

There are between one to three practitioners directly running the service in each municipality with support from ACTION. Approximately 15 to 25 care recipients and informal carers assist making each information and education program. Moreover some experienced informal carers regularly support ACTION marketing and different R&D projects. Depending on the initiative’s needs, other users can participate for a short time.

Call centre practitioners are responsible for:

-providing information about the service on the municipality’s website and at a carer or senior meeting centre;

-together with other ACTION carers, they provide computer training and general advice, education, certification and ongoing virtual supervision programmes (administered by researchers and expert practitioners) to learn how to use the ICT service.

Moreover, employers of Telia Sonera give their technical contribution.

Volunteers are involved in particular in providing peer support in groups for discussion, practical and emotional help.

11 - 100

100 users

The service web page has also an English version.

Information and communication channels are mainly the online company page with reports and articles, the contact link to all company workers and the section on research that was carried out and is planned.

As far as promotion often service users find out about the ACTION service from care practitioners in their municipalities, from their local carer association or pensioner organisation. Sometimes ACTION Caring Ltd. Sweden advertises and actively contributes to international, national, regional and local care conferences and exhibitions.

The service positively impacts on the quality of life of:

• Informal carers, by helping them to reconcile care and work, improving their social life and health.
• Paid assistants, by improving their social life and health.
• Older people, by improving their health and social relationships.

Another benefit is that the service may increase the level of acceptability of ICTs among older persons and their carers. In this respect, even if the initiative’s helping care staff realises that ICT-based services are useful tools, they often have low opinion of older people's capacity in the usage of technology. Moreover professionals often assume that caring can only be “face to face” (Magnusson et al., 2005; Torp et al., 2008).

The service positively impacts on:

• Private organisations that provide care, by helping to save costs and optimise resources.
• Companies and the labour market, by helping the informal carer to reconcile work and caring tasks, avoiding added costs for substituting/replacing the worker who has to stay at home (Magnusson et al., 2005).

The service could benefit public authorities, the NHS and social care services by allowing cost savings on home caring and hospitalisation, but this aspect was assessed at small scale and its evidence is inconsistent (Magnusson et al., 2005).

Strengths:

1. According to early Swedish and EU evaluation data, the service was successful in helping target users. Informal carers who benefited the most were strongly willing to care for their spouse/partner at home, however they had a small supporting role and most had little prior knowledge of caring. Those gaps were filled by ACTION.
2. The service primarily increases family carers’ and care recipients’ quality of life. At the same time, it empowers municipalities, increases the ICT skills of its staff and helps care recipients and their family carers to manage the situation alone for as long as possible.
3. ACTION fosters a more efficient way of working and allows municipalities to save money and resources.

Weaknesses:

1. Although the service has been evaluated, the small number of users does not allow generalisations of results. Not having changed enough the awareness and attitudes of health and social care practitioners’ and managers’.
2. Action still has to culturally adapt to better fulfil the preferences of older people of different ethnic minorities.

Opportunities:

1. Two recent externally funded projects to fulfill the needs of older adults with acute mental health problems and their informal family carers could give the opportunity to sustain the service.
2. An opportunity could be using ACTION to develop an ICT service for younger adults (18-30) with functional limitations and for their carers.
3. The majority of funded EU projects always have focused exclusively on older people. Now there is a new interest in informal carers due to the current economic climate and the need to contain public care costs in nearly all European states. So the ACTION objective is in line with market needs and could be further sustained if it will be able to fulfill them.

Threats:

1. During the Swedish implementation of projects, the municipalities did not routinely collect sufficiently detailed descriptions of service users;
2. Lack of a clear national mandate on record-keeping of family care support services as municipalities are largely self-governing and don’t highlight the potential effects of more innovative complex and multifaceted services such as ACTION;
3. Similarly, to other family care support services, the timing of ACTION introduction is crucial. According to data it should be installed as early as possible, prior to a crisis and when families are still able to see their caring tasks as a new skill rather than as an additional burden. On the contrary, data suggested not introducing the service too early for spouses/partners of older people with early stage dementia, since they don’t recognise their role as “carers”. So deciding when to use ACTION is critical not to lose potential users.

Challenges:

1. Making possible to integrate access to physicians and health care practitioners by means of the video-phone and remotely monitoring and treating the older person.
2. Convincing decision makers to invest in the service.
3. Making the service flexible enough to accommodate more directly the younger and more computer-literate carers’ needs.

Planned developments are to maintain the service users’ health status allowing contact with physicians and health care practitioners and to remotely monitor clients’ vital signs and treat their chronic conditions. These new outcomes have come directly from service users’ feedback. According to the ACTION coordinators this development can be done in cooperation with other companies, universities and care providers.

A European pilot test of the original ACTION prototype showed good results, creating positive transferability chances to other local European contexts despite its limited present local and regional coverage. It is available in Boras but it is planned to enlarge it to other Nordic and European countries, even if translations and cultural adaptation are needed.

There are currently about 100 users. According to population statistics, there are more than 75,000 potential Swedish clients. However, it is worth trying only if there is a genuine interest and in partnership with a provider that has already implemented the service.

Users’ satisfaction is high. People stop using it, either due to institutionalisation or death of the care recipient.

A significant development was when the Borås municipality included the ACTION initiative in its mainstream services for its older citizens living at home in 2004.

References

Magnusson, L., Hanson, E., & Nolan, M. (2005). The impact of information and communication technology on family carers of older people and professionals in Sweden, Ageing and Society, 25(5), 693-714.

Magnusson, L., & Hanson, E. (2005). Supporting frail older people and their family carers living at home using Information and Communication Technology: A Swedish case study cost analysis, Journal of Advanced Nursing, 51(6), 645-657.

Publications

Bergström, I., Blusi, M. & Höijer, C. (2010). Utvärdering av ACTION Anhörigstöd i glesbygd, Hjälpmedelsinstitutet, Vällingby, Sverige.

Torp, S., Hanson, E., Hauge, S., Ulstein, I., & Magnusson, L. (2008). A pilot study of how information and communication technology may contribute to health promotion amongst older spousal carer. Health and Social Care in the Community, 16(1), 75-85.

Magnusson, L., Hanson, E, Brito, L., et al. (2002) Supporting family carers through the use of information technology - the EU project ACTION. International Journal of Nursing Studies, 39(4), 369-381.

Resources:

www.actioncaring.se

Address:

ACTION
University College of Borås
The Institute of Healthcare
501 90 Borås

 

For Information

Websites: www.actioncaring.se

 

Contact person:

Lennart Magnusson, Managing Director

Phone: 0046-(0)33 174796

Cell phone: 0046 (0)706 302321

E-mail: lennart.magnusson@hb.se

 

Elizabeth Hanson, Scientific leader

Cell Phone: 0046(0)703 614846

E-mail: elizabeth.hanson@hb.se

 

Ulf Grahm, Chairman

Cell Phone: 0046 (0)708 164122

E-mail: ulf.grahm@hb.se

 

Paul Svensson, Responsible for information and implementation

ACTION Caring AB

Phone: 0046(0)33 4354714

Cell Phone: 0046(0)704 551195

E-mail: paul.svensson@hb.se

 

Fredrik Arvevik, Project Manager

ACTION-centralen, Borås Stad

Phone: 0046(0)33 353095

Cell Phone: 0046(0)704 553095

E-mail: fredrik.arvevik@hb.se

 

Helena Heineman, Project assistant

Phone: 0046(0)33 4354782

Cell Phone: 0046(0)73 9061463

E-mail: helena.heineman@hb.se

 

Annica Larsson Skoglund, Project administrator

Phone: 0046(0)33 4354702

Cell Phone: 0046(0)73 2305906

E-mail: annica.larsson-skoglund@hb.se

 

Håkan Olsson, database- and multimedia developer

Phone: 0046(0)33 4354767

Cell Phone: 0046(0)735 099925

E-mail: hakan.olsson@hb.se

 

Denis Sevo, videoconferencedeveloper

Cell Phone: 0046(0)733 602112

E-mail: denis.sevo@hb.se