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Co-design, Social
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Progress - Interactive website

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In Sweden, 1.3 million inhabitants support or care for a relative or significant other on a regular basis. One in four older people (65+) and a third of adults in paid work (45-64 years) are family carers providing practical help with activities of daily living, supervision, social stimulation and company, help with contacting authorities, financial support and assistance, and personal care. ‘Ageing in place’ policies and targeting of home help services for those older people most in need has meant that family carers increasingly bear the brunt of care. It is recognized that as caring responsibilities increase in intensity there is a corresponding negative effect on family carers’ mental and physical health. There is a growing awareness of the need to provide timely support to family carers and to recognize and actively involve them with the patient as partners and ‘co-experts’ in the care process. However, many existing carer support services lack evidence as to their efficacy and there are calls for more individualized, flexible services that better meet the needs of family carers at different points in time. The use of ICT to provide more responsive support for family carers of older people is increasingly being recognised as a potential solution with the ultimate goal of enabling ‘ageing in place’ (Magnusson & Hanson, 2012).

Within the current INNOVAGE project (2013-2015), a general web platform for carers of older people in Europe is being developed led by the Italian Ageing Centre in collaboration with Eurocarers. The patform will be piloted tested in Sweden (by the Swedish Family Care Competence Centre- SFCCC), Germany and Italy. It is intended that the prototype will then be culturally adapted and pilot tested in an additional 24 member states. Following completion of the project, responsibility for updating and running the web platform will rest with national members of Eurocarers. In Sweden, the SFCCC will be responsible for updating national content and running the web platform for family carers in Sweden. Based on our previous research in the field, we know that family carers often ask for specific information tailored to their own caregiving situation. Thus, building on the INNOVAGE general web platform we will develop disease-specific modules together with family carers, older people with chronic HF and with representatives from the patient organisation.

Aim: To ultimately enable the older person with HF to live at home for longer with the support of their family carers and in partnership with health and social care professionals.

Method: The project will be carried out in two stages. Stage I will consist of development and feasibility testing followed by Stage II: a RCT. The first stage will occur during the first three years of the project and involve five phases: an exploration of users’ needs, development, verification, field testing, and refinement. A co-design methodology will be adopted, building on the ACTION design model in which family carers and older people together with researchers are involved in the entire design process. During the second stage, an RCT will be carried out in which family carers are randomly allocated to the developed tailored website support; the Innovage website support and standard support services (control).

Impact: Given the vital role played by family carers in the support of frail older relatives living at home, it is essential that there are effective and responsive support services available to meet their needs for information, education and support to enable those carers who wish to continue caring to do so.
In the RCT study, we will study if there is a positive impact on the following variables within the tailored website support compared to the general innovage web-support and the control group: preparedness for caregiving, components of the difficulties, satisfactions and management strategies, perceived social support and needs assessor known to the family carers.

What is new: This project marks a paradigm shift in that family carers are seen as active partners in care and the intervention is intended to help them become co-experts with regard to their caring situation together with the older person and in collaboration with health and social care professionals