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ICT-enabled services for carers and care: pathways and actors in the development of services for Long Term Care


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Presentation at the University of Edinburgh July 2012 of IPTS studies on ICT-enabled services to support informal care of the elderly,in the context of Long Term Care policy. The presentation reports …

Presentation at the University of Edinburgh July 2012 of IPTS studies on ICT-enabled services to support informal care of the elderly,in the context of Long Term Care policy. The presentation reports on the empirical evidence and analysis of expereinces supporting informal carers for the elderly across Europe, and discussing challenges for policy: supporting innovation and knowledge transfer

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  • Benefits calculations Newhaven Research (2011) The Telecare Development Programme in Scotland 2006-11 Three-quarters of all carers reviewed felt ‘less stressed’. Telecare offers the carer ‘peace of mind’ about the well-being and safety of the person they cared for. Telecare helped some carers participate in paid employment. Most carers felt that telecare complemented their caring role rather than reducing or replacing caring tasks. (University of Leeds Qualitative impact assessment)
  • Language Line translation We use Language Line, a telephone translation and interpreting service that has access to more than 100 languages. This three-way conferencing facility enables our helpline advisers to communicate through a trained interpreter, making Carers Direct accessible to many people whose first language isn't English. Text Relay and Typetalk Deaf, deafblind, hard of hearing and speech-impaired people can use the Text Relay/Typetalk service to contact the helpline. Typetalk operates by connecting a textphone/minicom user with a telephone user through a relay assistant, who types speech into text and speaks any written text. To use Typetalk, simply type a prefix before the telephone number to activate it (18001 from a textphone, 18002 from a telephone and 18000 for emergency numbers). Typetalk users are then connected to a relay assistant to start their call. Calls are charged at a standard rate throughout the UK. There is no additional charge for using Typetalk. For more information regarding this service, please contact 0800 7311 888 or visit the Text Relay website.
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    • 1. ICT-enabled services for carers and care: pathwaysand actors in the development of services for Long Term CareJames Stewart, Stephanie Carretero, & Clara CentenoJoint Research Centre (JRC)Institute for Prospective Technological StudiesThe European Commission’s Research-Based Policy Support Organisation
    • 2. Joint Research CentreThe European Commission’s in-house science service Serving society Stimulating innovation Supporting legislation
    • 3. IPTS: Part of Joint ResearchCentre of the EC: 7 ResearchInstitutes across EuropeMission: “to provide customer-driven support to the EU policy-making process by developingscience-based responses topolicy challenges that have botha socio-economic as well as ascientific/technologicaldimension”
    • 4. Innovation in Long Term CareLong Term Care is a major policy challenge in the face of aging population (demographic aging) and other social and cultural changes.Strong national differences in organisation of care, and status of care for the elderly (state services, insurance, family, volunteers etc)Care provided by Family, and a heterogeneous set of care services: health and social care, state, private and third sector. Existing organisation and techniques considered insufficient.Support to the elderly, and to family carers is organised locally and poorly fundedDiverse and distributed experimentation across Europe – “ socialOctober 25, 2012 4 innovation”
    • 5. Policy to support ChangePolicy questions Research How can the European 1. Identify effective ICT-enabledCommission support innovation servicesthat produces effective Describe services and theiroutcomes: various impacts 1. Positive outcomes for elderly 2. Advise on the Transferability, and carers (verifiable with Replicability and Scalability of evidence) these ‘promising’ services 2. more effective and efficient Explore the organisational, policy provision of services and technological innovation 3. stimulation of economic processes and practices in place development in Europe in relation to ICTs, Long Term Care and informal carersOctober 25, 2012 5
    • 6. Making the users visible and givingthem a voiceFamily and other informal carers invisible in social and health care systemUsers in design of ICTs systems for LTC are the “the elderly”, health care professionalsHow are carers becoming ‘users’ in development of ICT-enabled services for long term care?October 25, 2012 6
    • 7. Aims:Provide some evidence, and assessment tools to give:• Policy makers evidence to allocate resources effectively• Care and carer organisations resource to learn and develop resources to support carers• Support the systematic inclusion of carers interests and concerns in the development of ICT-enabled services such as telecare, AALOctober 25, 2012 7
    • 8. Proportion of population aged 80 or more, EU-27 (% of total population)
    • 9. Trends in Long Term Care(LTC) Changing family Structures Life expectancy Mobility Labor force Ageing Demand Caregiver for care s Women at work supply Quality of care Difficult conditions of work/life ICTs involved in many of these developments
    • 10. Family Carers Existing Support for family carers consists of financialFamily carers and unqualified, measures and servicesoften illegal , family paid care Not helped byassistants provide 50-90% of • Limited support by careLTC to dependent older people services, and limited uptake ofin European states respite care, counselling, support groups, formal careCarers carry a heavy burden : support, training etc• Poverty and unemployment • Many carers do not recognise• Isolation both physical and social themselves as carers.• Physical and psychological stress • Sidelined or ignored by• Lack of skills in caregiving professional care and health (leading to poor caregiving) services• Lack of knowledge of LTC • Formal care => stress on services family • Not part of mainstream Long Term Care Policy
    • 11. Best Practice: Scotland?Scotland is a leader in fields such as:• Telecare• Joined-up health and care services• Inclusion of family carers in telecare• Support for carers, and political profile of carers• Focus on family carers in chronic illness• Involvement of care organisations in innovation projectsBut in general the discourse in future-looking eHealth, LTC policy often seems to ignore or downplay role of informal carers for dependent elderly.
    • 12. IPTS research on ICT for domiciliary care Exploratory research on ICT for carers (2008-09) Potential of ICT for informal CARICT (2011) care: need of more evidence- 1) how ICT can support the creation of a based data on impact, sufficient number of available (motivated) scalability and and skilled informal caregivers and family business models employed care workers? 2) how technology-enabled services can allow above caregivers to: Funded by DGINFSO and - better engage with care recipient, JRC - improve their quality of life and Research team: - improve quality and efficiency of care? IPTS and European Centre
    • 13. Research Methodology12 Countries: UK, IE – AU, FR, DE – SE, FI - IT, ES – HU, CZ, SIEuropean Center for Social Welfare policy and Research + 4 National research organisations: CIRCLE (UK), INRCA (IT), Institute of Sociology of Academy of Sciences (HU), Swedish National Family Care Competence Centre, and Eurocarers Geographical coverage Beyond pilot statusResearch methods:1) Mapping of initiatives in 12 MS through a literature review Types of ICT:2) Development of an Multi-Level Impact Assessment Methodology (QT, QL) Independent living, Information and learning,3) In depth analysis of innovation processes and impact through interviews Personal support and social with initiative coordinators and documents analysis integration for carers, and4) Expert (June 2011) and policy (Nov 2011) validation workshops care coordinationEVALUATION OF:Cross analysis of impact, success factors, drivers and challenges
    • 14. ICTs to help carers Online training,ICTs for: assessment Web information TV-based Information Phone support and Learning Independent Personal support Living and social for older people integration TeleworkSmart homes Internet forAAL Care Coordination socialTelecare networking,Ehealth shopping,Internet Organisation ITgovernment Social Networking over internet services etc Phone-based systems
    • 15. CARICT (52) initiatives in 12 countries MAPPED INITIATIVES BY TYPE OF CARE REGIME AND COUNTRY Care regime Country Mapped initiatives Ireland 3 United Kingdom 7 Anglo-Saxon (liberal) Overall number per 10 care regime Austria 4 France 6 Continental Germany 6 (corporatist) Overall number per 16 care regime Sweden 5 Finland 3 Scandinavian (Nordic) Overall number per 8 care regime Italy 5 Spain 4 Mediterranean Overall number per care regime 9 Hungary 5 Czech Republic 2 Slovenia Eastern European 2 Overall number per care regime 9 Total 52
    • 16. UK France Sweden SloveniaLeeds City Council Telecare Cyber France My Joice TV Red button telecareServiceCarers UK online forum: Salveo ACTION My healthcare personal reminderHFT (formerly Home Farm Trust) Maison Village Family Care Support Portal Italy (Anhörigstödsportalen)Book Your Own Breaks Forum aidants GAPET CAMPUSTelecare Scotland Web-napperon IPPI & AMIGO E-CAREJust Checking Open and distance learning Hungary C.A.S.A. (Care Assistants Search Agency)Nottingham Community Housing Germany Skype care Ring Project (TransferringAssociation supports for caregivers)Ireland SEKIS Emergency alarm T-Seniority ProjectFold Group Pflege Wiki MOHANET SpainTry It Vitaphone Életvonal 24 Andalusian Telecare ServiceEmergency 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 Tele-gerontologia Helpline (Zivot 90)Alzheimer Website Finland Careion Emergency Caren@tzwerk pflege Vivago WatchPlattform für pflegende Angehörige The CaringTV (Hyvinvointi TV)
    • 17. Name (Start year) Service description Care support meansACTION SE University Spin-off provides technical system, training and support to Elderly spousal carers can use Web-based training support, video(1998) municipal care services, who use service to facilitate quality home care. phone links to a social care call centre, to communicate with network of families and specialised practitionersCAMPUS IT Care organisation develops and provides training material to local Set of online and DVD-based training material for informal carers(2004) municipalities and individuals. to improve caring skills and life chances for family and carers and migrant care assistantsCARING FOR OTHERS Canad Multi-service health service organisation programme verified by research 10 weekly group training sessions via internet video to high burden(2000) a and standardised and documented to be licenced to other care providing housebound carers, with follow-up video support group, and online organisations trying to reach housebound carers. information.CUIDADORAS En RED ES University/voluntary-led initiative with local ICT- centres in rural areas to Training courses on ICT-skills to improve access to information and(2008) support carers in Andalucia. social support, primarily for female family carers and care assistants. Online community.E-CARE IT Regional and local health and care planning and coordination platform Care planning and coordination with multiple agencies, families(2005) run by a private company, but involving large range of public and private and volunteers; provides call centres, telealarms, tele-health, video organisations. conferencing, online information, tele-freindingIPPI +AMIGO SE Services sold by private company to local care authorities and some TV based communication system for older people to communication(2004) individuals in Sweden to help them meet mandatory care requirements. with care services and family, (including teenagers) with call centre Exploring market in Asia. for relatives to update and coordinate care.EMERGENCY ALARM HU Service provided by large NGO in welfare services to local authorities and Social alarm over GSM, with call centre staffed primarily by(1994) other care providing organisations (e.g. churches) in urban and rural volunteers, facilitating home care. areas.JUST CHECKING UK Private company provides technology, service and training via Electronic Monitoring of movements of people with early-stage(2003) subscription to local care commissioners in the UK dementia sufferers living at home helps professionals and family better understand care needs, building trust, and facilitating independent living and home care.PLATFORM FOR AU A central government funded and operated service to provide information Information web site & hot line in two languages about caring,CARING FAMILY to carers national wide building on existing counselling hotline. 92000 services etc. website visits in 2010MEMBERS(2006)REACH I/II USA Research driven project (RTC) to determine scientifically design and test Integrated service supported by nurses, online, video and telephone(experimental effective multi-component support interventions for carers across a range including therapy, advice, a bulletin board and training aimed at of US locations. reducing burden and depression in family carers, to support carers1995, 2001) of dementia sufferersSOPHIA DE Initiative by housing company to support tenant to remain in their homes, Multiple types of Social alarm, and a call centre to support(2005) in cooperation with local care services and a service provider company identification of older persons needs, and provide phone based operating in a number of regions. End users pay for 2 different service social support to older people and carers by volunteers. packages. 3500 users in Germany in 2011.TELECARE SCOTLAND UK National programme to develop telecare to support home care in care Social alarm and home-care sensors to support local care services(2006-2011) now regions across Scotland, involving central change team, local authorities, and family members care for older people in the community. private technology suppliers and carer support associations. Incorporatedmainstream service into NHS24 service in 2012.
    • 18. SOPHIA (DE)SOziale Personenbetreuung – Hilfen Im AlltagAfter State funded R&D phase (1.5m EURO) SOPHIA founded in 2005 by CUP 2000 in partnership with Northern Bavarian housing company (THS Wohnen GmbH) and operates in five German statesService to elderly with limited mobility with low-moderate care needPackage of telecare,safety wristband with monitoring function, GPS monitoring, PC-TV terminal to service centre.SOPHIA Franken involves about 100 staff inc 85 volunteers in service centres who are “godparents” of the usersDevelopment of a platform of services to older peopleCo-payment financing, with basic insurance cover.Reduced demands and stress on family members who often live at a distance
    • 19. Independent livingTELECARE SCOTLAND +NHS 24 • One of a range of national initiatives to improve health and care services (JIT, with 70m GBP budget; 20m investment in on Telecare) • Replacement of institutional care with housing including various sensors and alarms, and mobile care staff. • Part of a range of ICT-based services to dependents and carers • Partnership with carer organisations and local authorities • Service rolled out over 17 regions and now integrated into ‘NHS24’service (new change funding programme on aging in place) .• Considerable innovation and learning over 5 year period. • 2007 onwards, over 43,000 people accessed a telecare service, with more than 30,000 still receiving one in March 2011 • The value of benefits arising from telecare expenditure from 2006 -2011 approx. £79m. Most savings split between avoidance of care home admissions, and avoiding hospital inpatient stays.
    • 20. Carers Information and help Plattform für pflegende Angehörige, Central government funded website to support carers with over 60000 users a year. AustriaCarers UK run a carers web and phone support service Total charity budget 3.5m GBP from donations and consultancy
    • 21. Online Training & Courses(England) Caring with Confidence National (NHS) City & Guilds – Learning for Living initiative seeking to provide training to Online Learning Programme for carers: 10.000 carers over 3 years (1) Learning resource Linked to national Carers Direct help line (2) nationally recognised (level 2) (cost 2.7m GBP) qualification: ‘Certificate in Personal Development & Learning for Unpaid → Local group sessions Carers’ → Workbooks for self-study → Online study sessions → Content/courses for BME since 2004, around 700 participants in 2009 carers
    • 22. Personal support and social integration Skypecare - HungaryPilot use of Skype on a PC for frail older people at home to talk to distant relativesInitiated by a University, Care charity and small business Av. 84 year-old frail, non-IT users, using home care service, with distant relatives and weak social networkReluctance by support by large firms and young social workers.Adaptation of technology and support of volunteers, specially young people, family and formal carers made service possibleEnthusiasm, connection with distant family, introduction to new technology improved wellbeing and autonomy of older people, reducing need for careBuilds intergenerational solidarity
    • 23. Care coordinationMany services to enable families friends and volunteers to share and coordinate caring responsibilities i.e. private social networking tools for families of dependent people:• ShareCARE – Netherlands• Caring Bridge,Carecentral, SharetheCare, Lotsa Helping Hands - USA• Low cost or free to end users (0-30 euros/month)
    • 24. Impact analysis (micro level)Services Impacts on Informal Carer Impacts of Older Person - hours of care + independent living & delay - eliminates the need for constant presence dependencyICT for Independent + peace of mind + health statusLiving - anxiety + perception of safetyOlder person + health-related quality of life + compliance in treatmentAlso for carers + reconciliation of care and work and family + improved relation carer-older + supports participation of other actors in care person (family, volunteers) + strengthen and develop social - burden of carerICT for networks + supports participation of other members of thecommunication + promotes self-support family (in part. Young)Older person - isolation + promotes volunteering + health status + accessibility to trainingICT for Information + caring skills and digital competence& Learning + Quality of care + employabilityInformal carer + sense of security + promotes development of informal socialICTs for Personal networks of carers that provide emotional and + Quality of careSupport & Social professional support + Quality of lifeIntegration - isolation + Improved relation carer-olderInformal carer - stress person + Quality of life
    • 25. Savings at meso-macro level Savings in Social care Savings in Health care 1- reduces the need for support of 3- reduces hospital admissions formal care both to the carer and to (because carer can provide better care the older person and is in better health) Services supporting 2- delays institutional care of older the informal carer person, because carer "can cope" Examples: 1,2 : ACTION (SE): 10.000€ per family/year 1- delays institutional care of older 5- reduces hospital admissions person 6- reduces length of hospital stays 2- reduces number of care visits 3- reduces overnight care stays 4- improves quality and effectiveness of formal care Services supporting Examples: Older person 1: Emergency Alarm (HU): Also for carers - reduces 40% institutionalisation; - home care 7 * cheaper than institutional (hard to substantiate) Examples: 1, 5, 6: Telecare Scotland (UK): estimated savings of 70m GBP (over 3 years), for 20m GBP investment (best of evidence, but still constested)
    • 26. Positive impact on health of informalcarers and the care systemICT – based services for domiciliary care :• Increase the quality of life for older people and carers,• Increase the access to qualified long- term care,• Allow the integration of health and social care services, empowering carers, to ensure adequate informal long – term care, and• Help to generate direct savings that contribute to the sustainability of the system.• Plenty of innovation and experimentation: universities, entrepreneurs, carer support organisations, health and social care organisations, telecare provider• Little transferable ‘legitimate’ evidence of impact• The third sector and volunteers are acquiring a main role for the sustainability of these services.
    • 27. Organisational, policy andtechnological innovation processes and practicesOctober 25, 2012 27
    • 28. Drivers of development of ICT services1. Improve quality of care and quality of life of older people on part of professionals and families;.2. Empowerment of older people to live at home and independently for longer.and of carers to look after family members without excessive burden3. the search for efficiency and effectiveness improvements in social and health care, being mostly motivated by:  Shift from expensive, and often low quality institutional care to home care for the elderly.  Improve the working conditions of care professionals.  Integrate different aspects of the health and social care service to provide more effective and efficient services.4. the need to realise systematic cost savings, mainly to reduce the costs of formal institutional support, especially medical and institutional care that supports home care.October 25, 2012 28
    • 29. BarriersTo demonstrate the value of ICT in the provision of long-term care.1. The acquisition of digital competences and skills and the access and use of ICT infrastructures.2. Value comes from systemic change, which is often unrealised3. Recognition of the role of the informal carers4. Scepticism, negative attitude and lack of knowledge5. Providing convincing scientific evidence6. The creation of an efficient, well functioning business model7. initiatives are being run by small scale innovation players, making extensive deployment difficult: The fragmentation of care services acts as a barrier to these new organisations trying to enter the marketOctober 25, 2012 29
    • 30. 3.- SUCCESS FACTORS1. The involvement of end-users, which includes carers, elderly people and formal care staff, in the design of services, complemented by training in digital and care services competences;2. The progressive integration of the ICT based service inside the existing or traditional social and health care system;3. The cooperation among stakeholders; being especially relevant the engagement of non-profit organisations4. The promotion of the involvement of different kind of stakeholders acting as intermediaries in development of ICT based services for informal carers.5. The exploitation of existing ICT and digital inclusion infrastructure,6. The development of policies that support decisions makers and providers at multiple levels and functions.7. The policy role is central for the success of the transferability
    • 31. Carer as “users” in the innovationprocess: role of carer organisationsNovel type of user representative in Europe. • UK and Ireland, Scandinavia leads development • Policy campaigning, local and national service provision. • Put family carers on political agendaCarers organisations taking an active role in innovation, but are poorly resourced and lack capacity to engage in technological innovationIn best cases Carers organisations take on key roles in innovation and knowledge transfer.How can/has capacity of these organisations be/been developed? 31
    • 32. Transferability and scalability ofservices in a fragmented environmentThe potential to develop a practice or service that is available in one locality into other locations1. Scaling a service e.g. local area to national (infrastructure)2. Knowledge transfer between local areas • ‘best practice’ • Knowledge transfer mechanisms • Reinvention Which path is best? How to combine scaling of common resources – e.g. infrastructure and common technical components, with local configuration and reinvention? How to ensure continued local experimentation v. consolidation ?October 25, 2012 32
    • 33. 3 Mechanisms and intermediary agents 1 Transfer of experience from one locality to another by intermediariesKey Agents small firms, third sector organisations.Little scaling, continual re evaluation and careful redeployment in each location.Policy rolea) Demand support: national or regional care programmes that legitimise ICTs as solutions, coordinate exchange of best practice, and provide change fundsb) Supply side: support small scale independent providers; encourage partnerships and takeovers by large providersOctober 25, 2012 33
    • 34. 2. Services could spread out over several nearby care areas, by a mix of policy and private intermediaries; mainly home care providers that already operate across a number of localities.Scaling, with continual improvement3.- Regional (National) health and care services led intra- regional transfer and capability building Regional/national Policy leadership important (cost) Heterogenous players to be aligned A mix of scaling and knowledge transfer.October 25, 2012 34
    • 35. ACTION-emerged from EU project. Local transfer, municipality by municipality; small company cannot do international transfer;JUST CHECKING: service that can be customised and sold to different care commissioners, by a private company, municipality by municipality; Partnership with large telecare operator supports for effective access to customers.HUNGARIAN EMERGENCY ALARM : national NGO develops service and offers it to local public authorities and care providers. Enables transfer of innovations across local areas. Local municipalities free to buy services. Similar services available in many countries.CUIDADORAS EN RED: service operates in several regions. Expertise primarily with local organisers.CAMPUS: EU funding originally; proposals to internationalise; local transfer between Italian regions and some internationalisation in progress.E-CARE: mature services, with well documented and developed computer systems and protocols: transferred between local care regions, using policy frameworks and private company; Supply firm prevented by law from international development; participation in European projects.TELECARE SCOTLAND: Coordinated national programme of improvement, local benchmarking. Extensive documentation and best practice. October 25, 2012 35
    • 36. Questions What tools has STS to deal with questionof scalability v. transferability?How can these be use to advise policy andother intermediaries?October 25, 2012 36
    • 37. Policy RecommendationsPolicy leadership to put in place the right combination of complementary, pre-existing, support and funding programmes for stakeholders1. To raise awareness2. To continue supporting research, experimentation and innovation3. To support the exchange of good practices, the collection of evidence and the transferability4. To support a European market of ICT based services for informal carers and elderly people5. To recognise the role and to support the value of the participation of the third sector and of volunteering in the provision of ICT based service for informal careOctober 25, 2012 37
    • 38. IPTS available reports • Long term care challenges in an Ageing Society: The role of ICT and Migrants – Results from a study on England, Germany, Italy and Spain (2010), integrates the results of four national reports Interim CARCIT reports CARICT: Analysis and Mapping of 52 ICT-based initiatives for caregivers, Deliverable 2.3 (2011) CARICT: Final report containing case-by-case detailed description and analysis of selected 12 Good practices (2012) Forthcoming Final Policy Report (4Q 2012) Can technology – based services support long-term care challenges in home care? Authors : Analysis of evidence from social innovation good practices across the EU CARICT Project Summary Report (Stephanie Carretero, James Stewart, Clara Centeno, Francesco Barbadella, Giovanni Lamura, Andrea Schmidt)
    • 39. Thank you very much for your attention! James.stewart@ec.europa.eu
    • 40. Impact Assessment MethodologyMicro, meso and macro levels
    • 41. Impact Assessment Methodology - Dimens Dimension Micro Meso Macro E.g. Number of carers reconciliation between E.g. Possibility to balance well E.g. Efficiency at work that balance care & 1. care and work care & work activities work activitiesQuality of Life E.g. Positive social contacts & E.g. Reduction in family E.g. Increased social social life of Informal relationships conflicts cohesion & inclusion Carer other dimensions of E.g. Psychophysical health & life quality of life (health, E.g. Number of non-stressed carers satisfaction leisure etc.) 2. E.g. Psychophysical health and E.g. Number of non-stressed carers Quality of Life of Paid Assistant independence level E.g. Number of reported E.g. Target number of 3. E.g. Physical level; Psychological cases of abuse/neglect by dependent older people Quality of Life of Care Recipient level; Independence level family members supported 4. E.g. Improvement of caregiving activities by direct (e.g. training) or indirect (e.g. Quality of Care provided by decreasing burden of carer) factors Informal Carer and Paid Assistant E.g. Care efficiency (in terms of E.g. Efficiency and E.g. Efficiency and 5. quality and cost containment) Sustainability for Social Sustainability for care Care Efficiency & Sustainability and sustainability for care Protection and Care providers recipients and families systems E.g. Resources of Care E.g. Marketability of ICT 6. E.g. Acceptability by carer and system to support ICT devices (from ICT device Acceptability care recipient devices (e.g. public producer point of view) investments in ICT) E.g. Availability of services E.g. Availability of 7. E.g. Accessibility of initiative (from care provider point services (from system Infrastructure & Accessibility by carers of view) point of view)