Introduction

Informal carers provide unpaid care, as well as practical and psychological support to dependent family members or friends. A carers' life is influenced gradually in different ways experiencing physical, psychological and financial burden.

In recent years, their role has been recognised worldwide, but still there are countries where legislation does not support carers. Moreover, in many EU member states very few contents and services for informal carers are currently available on-line: it is clear that the potential of the web is not yet exploited in all countries.

Indeed, a specific social innovation within the INNOVAGE project aims at developing a multilingual web platform addressing the most relevant informal carers’ needs, to be implemented in all 27 EU member states with both common and national-specific services. The platform includes not only contents related to caregiving activities and coping strategies, but also interactive tools allowing informal carers and other target groups (i.e. care professionals and employers of working carers) to communicate, share their experiences and support each other.

INRCA, the Italian National Institute of Health and Science on Aging, and EUROCARERS,a non-profit organisation with an EU scope of supporting carers, are the main partners for the development, implementation and dissemination oftheweb platform.

The dissemination plan of the web platform initiates early in the lifetime of the project with the motivation of Eurocarers member organisations network. Users feedback is requested in all stages of development and design, investigating carers' needs, user-friendliness, graphic design,contents development, sustainability and other dimensions.

As part of the disssemination activities, the web platform will be disseminated in all EU member states. Presentation and training of the web platform to carers, care professionals and employers is part of main dissemination plan. Scheduled activities include EU and national events with representatives of Eurocarers member organisations, users and relevant stakeholders.

For regular progress updates, please see the presentations from each of the INNOVAGE Forums:

Methodology

The overall goal of this social innovation is to develop a web platform for family carers of dependent older people, which will be implemented for all 27 EU member states with both common contents and national-specific ones, as well as interactive tools managed at national level. The following user needs will be addressed through the platform: information; social inclusion; reconciliation of unpaid care and paid work; and training on care provision. Furthermore, additional national-specific contents addressing issues dealing with the role of employers of working carers (reconciliation issue), as well as the role of care professionals (integration between formal and informal care), will be developed and implemented in certain EU countries.

The main output should be the online publication of the web platform into the Eurocarers website after an adequate development, refinement and evaluation process that will guarantee its quality of contents and usability, according to an iterative involvement of users and experts in the field in all phases.

Activities are divided in three main tasks:

  • Task 1 – Definition of Protocol of Action (PACT) (December 2012-February 2013): this preliminary activity concerns the finalisation of a common protocol between partners (INRCA and Eurocarers) that clarifies in detail all aspects of project activities, including roles, responsibilities and schedule.
  • Task 2 – Development and pilots (January 2013-August 2014): this activity concerns the development of the web platform and the field work for testing it with users in three EU countries (i.e. Italy, Germany and Sweden). After a preliminary review of good practices (i.e. successful web-based support services for carers), two main phases are planned:
    • design and development: the web platform will be designed and developed according to accessibility and usability criteria, taking into account needs of target groups. A continous involvement of users (e.g. user tests, rapid prototyping) is guaranteed. Contents will be developed according to the most relevant and significant needs emerged from consultation process with users and stakeholders;
    • pilot tests: the prototype of the platform will be tested in three sites with samples of users. All the pilots will be evaluated through a one group pretest-posttest design assessing different outcomes, like impact on users’ self-efficacy, social isolation and acceptance of the web tools.
  • Task 3 – Implementation (September 2014-March 2015): this activity concerns the final online publication of the web platform, becoming publicly accessible to users. After eventual revisions according to the results of the evaluation, there will be a translation of common contents for informal carers (piloted in the previous task) and a development of national contents for informal carers (in all countries), employers and care professionals (in some countries).

An additional task will deal with the dissemination and training among users and stakeholders, explaining how to use the platform and carrying out an awareness campaign. The main outcome of the WP6-task 3 should be the wide dissemination and training of the web platform among informal carers, employers and care professionals across Europe through a detailed user involvement process.

The following activities will be carried on in parallel between March 2015 and November 2015:

  • Presentation and training for informal carers: this activity concerns the dissemination of the web platform among informal carers of all 27 EU member states and their training on how to better use the platform. This activity will include: (a) one EU-event with 27 representatives of Eurocarers member organisations from each member state; (b) 27 national events, each with 15 (regional or organisational) representatives.Other (c) local events are possible in each country (ideally 15 ones per country, each with 20 local carers), but depending on contextual availability.
  • Presentation and training for employers: this activity concerns the dissemination of the web platform among employers of 10 EU member states and their training on how to better use the platform. This activity will include: (a) one EU event with representatives of national stakeholders from 10 member states (b) 10 national events, each involving 10 representatives of employer organisations per country.
  • Presentation and training for care professionals: this activity concerns the dissemination of the web platform among care professionals of 10 EU member states and their training on how to better use the platform. This activity will include: (a) one EU event with representatives of national stakeholders from 10 member states; (b) 10 national events, each involving 10 representatives of care professional organisations per country.

Additionally, main aim ofEU events is to train representatives of Eurocarers organisations on how to use the web platform, how to disseminate it to its EU Member State, by providing information on the way that national events will be organised.

Main aims of national events of dissemination plan are to train representatives, stakeholders and users in the use of the web platform, to raise awareness on caring issues of older people and to provide information on the organisation of local events.

Finally, main aims of local events are to organise workshops with main users: carers, employers and care professionals, to provide training in the use of the web platform and receive feedback from main users.

The implementation of (top down) dissemination in three levels: a) EU level, b) national level and c) local level provides large-scale dissemination covering all target populations.

Findings

On 6 and 7 May 2015, InformCare, the first EU-wide online support portal for informal carers, was launched in Brussels.   InformCare is a joint initiative between Eurocarers and the Italian National Institute of Health and Science on Aging, and is one of the major outputs of the INNOVAGE project.

Developed over a 2 and a half year period, InformCare offers five areas of support for carers, in national languages for all EU27 countries.   Four main information sections deal with ‘Caring for the elderly’, ‘Your own needs’, ‘Support by the state’, ‘Get help’. These sections have specifically been designed and developed to address carers' needs, doubts and concerns, as well as providing links to additional local support and resources available in the carers' own country 

This is supported by a set of interactive services which provide a meeting point for carers.  Provision varies in each country, but carers will have access to one or more of: a dedicated social network, a forum and private messages, chat and video chat rooms. These tools all have the goal of enabling carers to easily get support from each other as well as from dedicated staff in their country.

In addition there are sections giving information about informal carers to care professionals and employers in ten countries.  

To access InformCare in your own language please visit http://eurocarers.org/InformCare and to find out more, please visit the Eurocarers YouTube channel, where a short introductory InformCare movie is available in 23 languages.

For more information about the launch event, please click here.

 

International Carers Conference - 6th September 2015

The InformCare platform hosted a seminar at the International Carers Conference in Gothenburg, Sweden in September 2015.    Five speakers provided an overview of the platform:

  • Francesco Barbabella, National Institute of Health and Science on Aging, Italy and Areti Efthymiou, Eurocarers: The impact of web-based services in supporting family carers of older people: results from a multicentre pilot study
  • Benjamin Salzmann, Wir Pflegen e.V., Germany: Pilot study of the German innovAge internet platform for carers: discussing usefulness and virtual social support
  • Frida Andreasson and Elizabeth Hanson, Swedish Family Care Competence Centre: Online support for carers. Using a social forum and social network as a means of developing the role of informal caregiving
  • Arianna Poli, National Institute of Health and Science on Aging, Italy: The Innovage-Eurocarers web platform supporting family carers of older people with dementia: results from an Italian pilot study

A video of the seminar and all presentations is available on the conference website.

 

Annual updates

Yearly reports, and final summary of findings, are downloadable below

2013
2014
2015
Summary of findings

 

Funded by the European Commission's Seventh Framework Programme
FP7-HEALTH-2012-INNOVATION-1/No 306058

©Copyright INNOVAGE 2013