Searching for evidence:

Transcription

1 Brussels Sept Workshop on Social Experimentation and home care Sept 2011, Brussels Searching for evidence: Assessing the impact of initiatives using Information and Communication Technologies (ICTs) to support family carers of older people. James Stewart Clara Centeno Joint Research Centre (JRC) Institute for Prospective Technological Studies The European Commission s Research-Based Policy Support Organisation

2 Institute for Prospective Technological Studies Brussels Sept IPTS: Part of Joint Research Centre of the EC: 7 Research Institutes across Europe Mission: to provide customerdriven support to the EU policymaking process by developing science-based responses to policy challenges that have both a socioeconomic as well as a scientific/technological dimension

3 Policy and Research Brussels Sept Policy Challenges ICTs for Social Inclusion Support the use and development of ICTs for participation in society, employment, etc; MAINSTREAMING INTO-> Future of Long Term Care for the Elderly Provision of Health, Social Care, Social Welfare in the medium to long term in response to demographic, economic and social change Europe 2020 strategies Ageing in place policies Reconciliation of work and care) Intergenerational solidarity Social and economic inclusion of: Informal caregivers Privately paid assistants Disabled older people Digital Inclusion Workshop themes Innovation in Home Care Methods for evaluating experiments

4 Brussels Sept Family carers (and increasingly, unqualified, often illegal, family paid care assistants), provide 80% of LTC to dependent older people in Europe Carers can carry a heavy burden : Poverty and unemployment Isolation both physical and social Physical and psychological stress Lack of skills in caregiving (leading to poor caregiving) Lack of knowledge of LTC services Not helped by Limited support by care services, and limited uptake respite care, counselling, support groups, formal care support, training etc Many carers do not recognise themselves as carers. Sidelined or ignored by professional care and health services Not part of mainstream Long Term Care Policy

5 Analytical caution Brussels Sept Analysis of support for carers is inseparable from analysis of the Long Term Care for dependent elderly people. Individual services to support carers cannot be analysed in isolation (However it practically they are often separate) Support for carers=better carer for dependents Many carers need support regardless

6 Trends in Long Term Care (LTC) Brussels Sept Life expectancy Budget constraints Changing family Structures Mobility Ageing Quality of care Demand for care Caregivers supply Proposed ways forward Labor force Women at work Difficult conditions of work/life Privatisation of care services New-family care Low-cost, motivated migrant care workers Joined-up care services Telecare Professionalistion of care assistants Improved health of older people Independent Living (Ambient) Assisted Living Robots New living arrangements etc ICTs involved in many of these developments

7 ICTs to help carers Brussels Sept ICTs for: How do these affect/involve family carer(s)? Independent Living for older people Technology systems to allow elderly dependents to stay at home without continual formal or informal care support, thus relieving pressure on care-giver. It may allow caregiver to leave recipient alone, or help them in caregiving. Smart homes AAL Telecare E-health Internet Information and Learning Tools that give access to information and training about caregiving, health and care issues for the dependent older persons, information and training about coping with caring; training for life - language, other work skills, accreditation of skills etc; Care Coordination Tools for coordinating formal sector and informal and family employed carers. Allows organisation of respite, sharing information on recipient's and carers needs etc. Online training, assessment Web information TV-based Phone support Personal support and social integration These provide a means of social, emotional & peer support, leisure, relief from isolation and chances for participation in work, civil society etc. Telework Internet for social networking, shopping, Organisational government IT services Social Networking over internet etc Phone-based systems

8 Brussels Sept Opportunities to: Opportunities and barriers for ICT in support of informal caregivers Support dependent older people Carers needs overlooked or bracketed Lack of knowledge & awareness Barriers ICT in LTC policies Support Quality of Care Fragmentation Unclear responsibilities Lack of coordination Lack of Awareness LTC Organist ions Support Carers Quality of Life Facilitate Participation in the economy and society Support Family-employed migrant care-givers Lack of awareness ICT access and skills Privacy/security fears Users of ICT ICT access restrictions at work Lack of adapted content Language barrier Residence status -> barrier/incentive migrant specific

9 Research Brussels Sept Exploratory research due to scarcity of data Countries analyzed: UK/ England CIRCLE (Centre for International Research on Care, Labour and Equalities) University of Leeds, Prof. Sue Yeandle, Gary Fry Germany Italy Spain Association of Senior Citizens Organisations (BAGSO), Dr.Heidrun Mollenkopf Istituto per la Ricerca Sociale (IRS), Sergio Pasquinelli Consultores Euroamericanos Asociados (CEA) and Innnovation Institute for Citizen Welfare (i2bc) Kluzer et al. (2010). Long-term Care Challenges in an Ageing Society: The Role of ICT and Migrants Results from a study on England, Germany, Italy and Spain.

10 Carers Direct Helpline (UK) Brussels Sept Phone Helpline (+ & mail) Language Line, a conferencing facility for instant translation by a trained interpreter. Text Relay/Typetalk service for deaf, deafblind, hard of hearing and speech-impaired. Support for Carers Quality of Life Support for Family-employed migrant care-givers Facilitating Participation in the economy and society Support for Quality of care

11 Online Training & Courses (UK) Brussels Sept Support for Quality of care Facilitating Participation in the economy and society Support for Quality of care Caring with Confidence National initiative seeking to provide training to carers over 3 years Local group sessions Workbooks for self-study Online study sessions Content/courses for BME carers City & Guilds Learning for Living Online Learning Programme for carers: (1) Learning resource (2) nationally recognised (level 2) qualification: Certificate in Personal Development & Learning for Unpaid Carers since 2004, around 700 participants

12 Cuidadoras en Red Brussels Sept Social Network for Carers since Nov 2008; connected to Carers of Pizarra (Malaga) 162 users; 13 groups (09/2010) Most frequent activities: Messaging, (micro)blogging, video sharing Support for Family-employed migrant care-givers Support for Carers Quality of Life Support for Quality of care Facilitating Participation in the economy and society Preliminary findings (12/2009) 100% gained or improved basic digital skills 43% have gained more advanced ICT skills social relations between carers and with younger family members improved

13 Need for more evidence Brussels Sept We need more, and better evidence to support policy decision making Impact on individual carers and dependents Impact if widely available and used Impact on Quality of Care Cost based evidence Potential and requirements for transferability and scaling Potential for meeting Policy Challenges

14 New study: 2011 CARICT Brussels Sept Towards Systematic and scientific evidence collection to inform policy Stimulate Impact assessment of initiatives to support informal carers: family and nonprofessional assistants (often migrants) putting numbers on stories ICT-based solutions for caregivers: assessing their impact on the sustainability of long-term care in an ageing Europe Policy Questions Can ICTs help support the creation of sufficient motivated and skilled informal carers? Can ICT-enabled services improve the quality of care, quality of life of caregivers, and effectiveness and efficiency of care given? CARICT

15 Consortium partners: Brussels Sept Funders JRC-IPTS and DG INFSO Principal Contractors: European Centre for Social Welfare Policy and Research in Vienna CIRCLE (Centre for International Research on Care, Labour and Equalities) - University of Leeds (England, UK) INRCA (National Institute of Health and Science on Aging), Italy Institute of Sociology, Academy of Sciences, Budapest, Hungary Swedish National Family Care Competence Centre, Sweden Eurocarers

16 Follow-Up Study on ICT based solutions for caregivers Brussels Sept Mapping & Analysis of 52 initiatives which promote the improvement of caring through ICT in 12 European countries Development of multi-level Impact Assessment Methodology measuring and assessing in quality terms the outputs and outcomes of ICT initiatives to support informal caregivers and family paid assistants Impact Analysis of 12 initiatives employing and evaluating the impact assessment methodology Scenario development and dissemination Using new data and dependency scenarios

17 UK France Sweden Slovenia Leeds City Council Telecare Cyber France My Joice TV Red button telecare Service Carers UK online forum: Salveo ACTION My healthcare personal reminder HFT (formerly Home Farm Trust) Maison Vill'age Family Care Support Portal Italy (Anhörigstödsportalen) Book Your Own Breaks Forum aidants GAPET CAMPUS Telecare Scotland Web-napperon IPPI & AMIGO E-CARE Just Checking Open and distance learning Hungary C.A.S.A. (Care Assistants Search Agency) Nottingham Community Housing Association May Mapped Initiatives By Country Germany Skype care Ring Project (Transferring supports for caregivers) Ireland SEKIS Emergency alarm T-Seniority Project Fold Group Pflege Wiki MOHANET Spain Try It Vitaphone Életvonal 24 Andalusian Telecare Service Emergency Response Ltd SOPHIA Body Guard Un cuidador, dos vidas (A caregiver, Two lives) Austria PAUL Czech Republic Ser Cuidador (Being a caregiver) Hilfswerk Notruf Alzheimer Blog Seniors' Telephone Crisis Helpline (Zivot 90) Alzheimer Website Finland Careion Emergency Care Tele-gerontologia n@tzwerk pflege Vivago Watch Bonus: Employers for Carers (UK) Plattform für pflegende A hö i The CaringTV (Hyvinvointi TV)

18 Selection Criteria Brussels Sept Maturity: The large majority of initiatives (46 out of 52) are in operational status Types of ICT used: Four main types of ICTs Support functions of ICT initiative support to care recipient; support to quality of care through the carer; support to carer s quality of life; participation; migrant-related function. Care recipient s dependency scenario: different needs of older dependent persons Presence of impact assessment: Initiatives were favoured if impact assessments had been conducted previously. Main objective: Functional functions of ICT-based services as well as to the conceptual framework of the project (see section 3.1): upgrading care quality; cost containment; transferring costs; empowering older people to live independently Interestingness

19 Outline findings from 50 cases Brussels Sept Many initiatives local and undocumented, which makes mapping difficult. While limited in some areas, Needs and benefits are driving innovation by people at all levels Heterogeneity of experimentation: Lots of NGO and private-led initiatives, with mixed funding, from public and out-off pocket contributions. Transformatory projects public in LTC service; Carer-focused websites Little systematic evidence of impacts at any level Some evidence for how success can be scaled or transferred to other contexts Few set up to scientifically prove their benefit real life social experimentation, not lab experiments

20 (Some) Features of success Brussels Sept EVALUATION User-friendliness Acceptance Awareness Data protection (Face-to-face) Training Integration with existing LTC structures Political willingness Successful extension from pilot to mainstream Technical functioning (Low) user co-payments Digital literacy (Local) Collaboration (Public) Financing mechanisms Considering cultural factors Recognition of family caregivers MICRO LEVEL Carers & care recipients MESO LEVEL Social environment & public services MACRO LEVEL Social system & Care policies CARICT - Assessing the impact of ICT-based solutions for caregivers

21 Barriers to development Brussels Sept Lack of collaboration (between formally qualified & informal carers; with local policymakers; between providers & health care sector) Lack of training and resources e.g. for local health care staff Cultural barriers (prejudices, fears about older people and ICTs) Fragmented policies for carers Kick-start funding - what comes after? CARICT - Assessing the impact of ICT-based solutions for caregivers

22 On-going work Brussels Sept More detailed analysis of 12 interesting and diverse examples Explore important themes in innovation e.g. Role of champions and innovation intermediaries Influence of different types of users Social learning processes Shifts in expertise as innovation established Integration and transformation of existing practices and structures Focus on evidence in the innovation process Type of evidence produced in practice (scientific, business, practice; demonstrations; arguments, numbers; stories) Role of this evidence in development of the service Methods used to develop this evidence.

23 Assessment Methodology Brussels Sept Can we stimulate the systematic evaluation of benefits and impact in this type of sociotechnical experiment? Awareness of the internal and external benefits of evaluation. Need accessible methodological tools CARICT produced a so-far inaccessible tool to be continued (too ambitious, please give generously) Need a toolkit, based on standard tools, (questionnaires etc): has to be flexible to accommodate the wide variety of types of services, not just ICT based. People have to know about it

24 Socio-technical Innovation Brussels Sept We need input for drawing out policy lessons, and research needs: Please get in touch!!

25 Role for carer organisations Brussels Sept Digital Inclusion policies are good for carers, but much more is needed Carers have specific as well as general needs: Customised training and support Made available in the right form in the right place Supported by services sensitive to carers needs. This needs strong input by organisations that know carers best

26 How can you help? Brussels Sept Your experiences benefits and challenges of ICT-based services What do different carers actually need in relation to current ICTs? What are the challenges in making effective use of ICTs to support carers? We need better dissemination: Can Eurocarers play a lead role in using, shaping, and disseminating evidence

27 ICT for LTC of the elderly Brussels Sept th century ICT: communication, broadcasting: Telephone, Radio, TV, music, alarms, disability specific devices Internet Age ICTs for 21 st century lives Personal ICTs Internet access, PC, mobile, ipad, , online community, social networking, on-demand media, provides entertainment, information, self-organisation IT for organisations and networks IT systems to improve efficiency, organisation, provide information, training, coordination, transparency with staff and customers Assisted Living technologies: smart, adapted devices and home provide help and safety those with physical and mental disability Telecare: allow state, 3rd sector, volunteers and family to provide, organise and share care responsibilities; Telehealth/ ehealth improve health of older people and avoid dependence

28 ICTs to help carers Brussels Sept ICTs for: Independent Living for older people Technology systems to allow elderly dependents to stay at home without continual formal or informal care support, thus relieving pressure on care-giver. It may allow caregiver to leave recipient alone, or help them in caregiving. Information and Learning Tools that give access to information and training about caregiving, health and care issues for the dependent older persons, information and training about coping with caring; training for life - language, other work skills, accreditation of skills etc; Care Coordination Tools for coordinating formal sector and informal and family employed carers. Allows organisation of respite, sharing information on recipient's and carers needs etc. Personal support and social integration These provide a means of social, emotional & peer support, leisure, relief from isolation and chances for participation in work, civil society etc.

29 Five Types of ICT-supported services that help carers Brussels Sept Support for dependent older person Support for Quality of care Support for Carers Quality of Life Facilitating Participation in the economy and society Specific support for Family-employed migrant care-givers Service for dependent older people, with the aim of improving their care, or changing the conditions of care An service that aims at improving or changing the conditions of care of the dependent older person by supporting or assisting the informal carer providing care at home, and improving the quality of care given: Service to support the carer themselves in their personal and emotional life, and in the case of family-employed care workers, to enable them to balance their work with other aspects of their life.. Service that enabling carers of all types to participate in aspects of life: Reconciliation of family and work; everyday activities such as banking, shopping; development non-care skills; enable informal carers to take part in active communities lobbying Initiatives that are aimed at the particular issues facing family-employed migrant care workers of all statuses. language learning; cultural integration, translations of skills training; combating isolation.

30 Challenges Brussels Sept Macro Policy Makers Meso Organistions Little knowledge in practice and policy circles LTC at a frontier of different uncoordinated policy and practice areas Barriers for evidence placed very high in centralised care systems Divergent national and political inheritance and pathways Local implementations hidden Innovation is User-led and NGO/private sector-led ignored by state provision Social Care and Health Care services poorly linked and coordinated Little market for products and service outside established (alarms etc) Carers disregarded in design of high-tech solutions Technology management experience low in Social Care Organistions Professionals under pressure and without expertise Basic training and support for ICT not funded Micro Carers in Everyday life Uptake of any support service low One-size does not fit all Informal carers often have low ICT skills, access and use Lack of training and support to use general or specific ICTs Suspicion that it is about machines replacing people Worries over privacy, safety etc Specific Barriers to Migrant care assistants

31 Potential Policy Options Brussels Sept ICT in LTC policies Policy makers need for knowledge evidence and analysis Awareness raising: - carers needs - ICT opportunities - ICT impact Integration of ICT in LTC policy and LTC in ICT policy ICT in LTC organistion Care organisation needs Employer needs Suppliers Research policy: Caregivers in design of ICT for LTC Awareness raising: -ICT opportunities - ICT impact Organisational implications Resources and skilling Users of ICT Carer awareness Access and skills Privacy/security fears Digital inclusion measures (e.g. training): targeted and focused Privacy & trust-building solutions

32 MAPPED INITIATIVES BY TYPE OF CARE REGIME AND COUNTRY Brussels Sept MAPPED INITIATIVES BY TYPE OF CARE REGIME AND COUNTRY Care regime Country Mapped initiatives Ireland 3 Anglo-Saxon (liberal) Continental (corporatist) Scandinavian (Nordic) Mediterranean Eastern European United Kingdom 7 Overall number per care regime 10 Austria 4 France 6 Germany 6 Overall number per care regime 16 Sweden 5 Denmark 3 Overall number per care regime 8 Italy 5 Spain 4 Overall number per care regime 9 Hungary 5 Czech Republic 2 Slovenia 2 Overall number per care regime 9 Total 52

33 Workshop Brussels Sept What experiences have you of ICT services in these 5 categories? What are the benefits, do they improve on alternatives, complement them, how integral is ICT to carer support now? What barriers are their to adoption? What about setting up and running services using ICTs? Do we have the expertise and budgets in IT? How important are user-led projects, and consumer products? Should we wait for integrated carer support services by public and private providers? What about family employed assistants?

34 ICTs in ltc: a challenge to everyone Brussels Sept How are ICTs changing the possibilities, costs and expectations of LTC Macro Analysis for policy makers Responsibility for provision of LTC for the elderly, and allocation of finance (family, state, private, employers; gender) Recognition of care responsibilities in citizen s lives Information Society: Investments and policy in ICT infrastructure and human capabilities Meso Organisations Micro Carers in Everyday life On-the ground organisation of care and health service provision On-the ground organistion of employment and services Investment and Innovation in ICT-based solutions, human skills etc Everyday caregiving and receiving experience and conditions Quality of life and Quality of care Local and individual use, benefits, problems and integration of ICTs in everyday life Dynamic picture at all levels, with different national inheritance and pathways, and challenges such as demographic and cultural change

35 ICTs in social inclusion and exclusion. Brussels Sept ICT use has become a basic part of life and citizenship. Many benefits of use. Communication Information Community/family Access to employment Commercial services (shopping, banking, services), Learning/Training Government services Leisure and everyday life Personalised/accessible/ interactive/mobile Non-use of ICTs creates new obstacles to participation in society Barriers to use Personal capabilities and motivation Personal and community socioeconomic barriers (cost, no workplace access, no local expertise etc) Poor/irrelevant design of services and devices Technical, Policy and Commercial barriers to supply/access General and Specific benefits for informal carers, but ICTs still not accessible to many carers Informal Carers and care assistants often fit profile of those who have none or low use of ICTs such as the internet due to following factors: low income; older age groups; lack of experience in labour market using ICTs; low educational attainment No clear market or policies to support ICT for informal carers.

36 Brussels Sept Critical Conditions Work load & time schedule (often 24/7) Limited knowledge of LTC services Lack of information/coordination on care situation Limited experiences & skills Emotional stress & social isolation The needs of informal caregivers Needs Improved working conditions; stress relieve Information Communication, coordination Training Social, emotional & peer support Home Care worker Healthcare Care professionals organisations Doctors & hospitals Cared Person legal & political framework Health insurance Public authorities Informal Caregiver Carer Informal associations Caregiver Voluntary Social networks groups family family friends Vocational training On the job training First aid qualification

37 The opportunities offered by ICT Brussels Sept Critical Conditions Work load & time schedule (often 24/7) Limited knowledge of LTC services Lack of information/coordination on care situation Limited experiences & skills Emotional stress & social isolation Needs Improved working conditions; stress relieve Information Communication, coordination Training Social, emotional & peer support Home Care worker Healthcare Care professionals organisations Doctors & hospitals Cared Person ehealth solutions, e.g. social alarms, telecare, assist. tech. Mobile phones, e- mail, internet, GPS Informal Caregiver Online information, phone helplines Online social networks, phones, skype, Informal Caregiver legal & political framework Health insurance Carer associations Voluntary groups Social networks Public authorities Migrants: multilingual information, iconbased devices, translation services family Online training, phone helplines, online courses & training guides family friends Vocational training On the job training First aid qualification

38 ICTs for carers: Evidence? Brussels Sept Why ICTs to support carers? What are the uses And benefits of ICTs for those in position of providing Informal care, and how these can be improved and made more widely available? Anecdotal, local and initial evidence positive (10 years) Millions spent on development of technology-based systems social and skills dimensions often lost carers not on agenda. Policy Makers need evidence of benefits to put/maintain ICT for carers on agenda, shape policy, support continued investment in training, Programmes, technologies and services.