Italian National Institute of Health and Science on Aging INNOVAGE WP3 DEVELOPMENT OF A WEB PLATFORM FOR INFORMAL CARERS SUMMARY OF ACTIVITIES FOR WP3 DISCUSSION GROUP INNOVAGE STAKEHOLDER FORUM 2 RIGA (LATVIA), 25 TH SEPTEMBER 2014 Chair: Giovanni Lamura (INRCA) Rapporteur: Areti Efthymiou (Eurocarers) WP3 leader: INRCA Principal investigator: Giovanni Lamura, Ph.D., g.lamura@inrca.it Project manager: Francesco Barbabell, Ph.D., f.barbabella@inrca.it WP3 partner: Eurocarers Project manager: Areti Efthymiou, M.Psy., areti@eurocarers.org
Key aspects of INNOVAGE WP3... The Italian National Institute of Health and Science on Ageing (INRCA) and Eurocarers are developing a web platform addressing informal carers needs, which will be implemented in the EU-27, with both common contents and national-specific ones. The final aim is to make available at both European and national level a set of web services supporting informal carers in different areas, such as: information; training on care provision; physical and psychological health; social participation; reconciliation of unpaid care and paid work; support and respite care. Additional national contents addressing employers of working carers and care professionals will be developed and implemented in selected EU countries, in order to promote a more adequate recognition of informal care among these target groups. What we have done so far... The characteristics of the web platform have been defining during the initial phase (February-June 2013), according to the results of a comprehensive consultation process with end-users and stakeholders. The platform to be tested includes both an information resources area and an interactive services area. This latter one is composed by different tools: internal social network (similar to Facebook), private messages, chat, videochat, and forum. The technical development of the prototype of the web platform for three countries (Italy, Germany and Sweden) and the preparation of contents for the pilot test were the key-tasks in the following period (July 2013-March 2014). A detailed structure of contents (i.e. site map) was agreed for the three countries in order to standardise the production of contents of national relevance (e.g. care and support services available, benefits from the state, contacts of user organisations) which were brand new and written by project staff. Furthermore, some contents were considered cross-national for their nature (e.g. descriptions of common impairments in older age, coping strategies) and retrieved from reliable external sources and websites, which agreed to contribute to the project. In addition, a study protocol was produced for defining how to test the package of web-based support services and for collecting first evidence of their usability and, to some extent, effectiveness on dimensions like quality of life, perceived social support, self-perception of carer s role. Each country was expected to test a different mix of services for a period of 12-17 weeks. The recruitment process was finalised through a convenience sample approach, also complemented by a snowball approach. In the end, around 130 users were involved overall. Appropriate guidelines were prepared for researchers responsible of managing interactive services at national level, on the basis of guidelines and indications by international associations of health professionals dealing with web-based counselling and support services. A detailed guide was given to users before starting the pilot for understanding how the platform is structured and how to use each interactive service. Pilot tests in Italy, Germany and Sweden ended by July 2014. Researchers have been managing the interactive services by replying to users and stimulating their participation both through web tools (e-mails, private messages, social network etc.) and other ones (phone calls, SMSs etc.). Intermediate feedback has been being gathered continuously both for addressing eventual technical issues and for improving features and contents of the platform. A constant monitoring of accesses and visits through appropriate software allowed to have a realtime understanding of the individual and collective use of the platform. What we are doing now... A mix of quantitative and qualitative data is being gathered after the end of pilot tests for evaluating the prototype. Focus groups were just organised in the different countries (with around 6-7 users per country) for getting the feedback of most active users. A final assessment report will be produced, indicating both results achieved and possible/suggested improvements. Results will be discussed and validated through an expert meeting with external researchers and stakeholders to be held on 28-29 October 2014. On the basis of results from the assessment, the platform will be refined and improved. 2
By December 2014, the prototype is expected to be finally improved and ready for implementation in 27 EU countries through both the translation of common contents and the development of national contents, as well as the initiation of national sets of interactive services. The platform will become publicly available in Spring 2015 and a wide dissemination process will take place at international, national and local level in all involved countries, in order to spread out the word on the service and train carers and stakeholders in taking the best advantage from it. Details about implementation in 27 EU countries After the pilot study, the web platform for informal carers will be implemented in 27 EU Member States, whereas national contents for care professionals and employers of working carers in paid employment will be implemented in 10 EU countries. Main tasks of the carers organisations will be: a) the development of national information, focusing on care and support services, financial and legal information. Development of national contents is estimated to be finalized by the end of November 2014. A personalised approach will be followed for each country, since health care and social welfare systems are quite differentiated in Europe; b) the dissemination and training of the web platform in 2015. Core tasks of dissemination will take place in Spring 2015. A multiplier approach will be adopted with EU events, national and local events. EU events will include training of the carers organizations representatives in order to be prepared for disseminating the web platform to national and local level. Dissemination tasks will be also tailored to specific needs of each country and organization involved. Dissemination in the first half of the project has included a number of activities and more specifically the tasks were focused on Eurocarers member organizations involvement and collaboration/exchange of good practices with similar projects. During the first year of the project, Eurocarers member organisations have been informed about the implementation of INNOVAGE project and the role that will play in the development and dissemination phase. Different media and communication channels have been used for this purpose (e.g. Eurocarers newsletters, Eurocarers AGM & Conference, e-mail communication, Facebook page, brochures). Additionally, INNOVAGE core team has participated in relevant conferences disseminating activities, core aims and preliminary results: ForItAAL 2013, AAL Forum 2013 and 2014, CareNet Final Conference 2014, Alzheimer Europe Conference 2013 and 2014, ISBA Conference 2014, Eurocarers Conferences 2013 and 2014. Dissemination activities targeting wider audience and relevant stakeholders will be continued in the second half of the project, focusing on national events in 2015. 3
APPENDIX 1 SOME SCREENSHOTS OF THE INNOVAGE WEBPLATFORM HOME PAGE CARING FOR THE ELDERLY section 4
HELP YOURSELF section COPING WITH CAREGIVING menu 5
EXAMPLE OF NATIONAL CONTENTS IN ITALIAN Care and support services: Home care services 6
APPENDIX 2 NETWORK OF NATIONAL NON-PROFIT ORGANISATIONS COUNTRY ORGANISATION Austria European Centre for Social Welfare Policy and Research (European Centre) Belgium Thomas More Kempen vzw (Thomas More) Bulgaria Alzheimer Association in Bulgaria Cyprus Cyprus Alzheimer Association Czech Republic Gerontologické centrum Denmark Carers Association Denmark Estonia Estonian Carers Finland The Central Association of Carers in Finland France Association Francaise des Aidants Germany Wir pflegen Greece Athens Association of Alzheimer's Disease and Related Disorders Hungary Magyar Máltai Szeretetszolgálat Egyesület - Hungarian Maltese Charity Service (MMSZ) Ireland Care Alliance Ireland Italy Italian National Institute on Health and Science of Ageing Latvia Apvienība Apeirons Lithuania Lithuanian Multiple Sclerosis Union Luxembourg RBS-Center fir Altersfroen (RBS) Malta SoS Malta Netherlands VILANS Poland European Care Foundation (EFO) Portugal Jose Alves (will collaborate with Santa Casa da Misericordia) Romania Ana Aslan International Foundation (AAIF) Slovakia Civic Association for Sustainable development of Regions in Slovakia (CASDRDS) Slovenia Slovenian Federation of pensioners organisations (ZDUS) Spain Confederación Española de Asociaciones de Familiares de Personas con Alzheimer y otras demencias (CEAFA) (tbc) Sweden National Family Care Competence Centre UK CARERS UK UK - Scotland VOCAL 7