To collect qualitative and quantitative data in 1,000 family care settings on health, health behaviour, process of care, health care utilisation, burden of care, costs etc. in different sites of the six core group countries.
Depending on the circumstances of the individual countries different health care institutions and sites such as General Practitioners and / or Primary Health Care centres or suitable care providers will screen their patients in order to identify dependent elderly persons cared by family members. In the rural areas of some countries like Greece or Sweden, other ways of identifying and contacting carers may be used. GPs or other health care providers will arrange the contact between the interviewers and the families. The interviewers visit the family carers and the elderly persons cared for at home. On the basis of the joint family care assessment protocol resulting from the pilot (WP 3) they will collect data about the dependent person's Activities of Daily Living, his or her Cognitive Status, Satisfaction with Care providers (not with the family carer!) and depressive symptoms.
Mainly family carers will be interviewed, especially if the dependent person is cognitively impaired. The family carers are asked about their roles as family carers (workload, burden, positive and negative aspects etc.) using the COPE-Index and CAMI plus a care burden inventory. They are asked to describe their experience with and opinion about any services providing support for the families. Additionally, information about their wishes and ideas about possible support measures will be collected as well as information about the direct costs (money for care products, transport, care services etc.) and indirect costs (loss of income, loss of pension claims etc.) related to the care for their elderly family members. The interviewed carers are informed that there will be a short follow-up interview by phone one year later (WP 9) and asked to participate. If they agree, their telephone numbers are collected.
If care providers are involved, the family carers are asked for their names and addresses and whether they should have any objections against contacting them in order to collect the providers' perspectives and experiences via telephone. The interviewers will use a semi-structured interview guide, and this will take approximately twenty to forty minutes.
They will send the completed questionnaires to the national centres for data entry (WP 6).
German
Italian