Methodology
The EUROFAMCARE project consists of several major parts. National Surveys (NASUR) and
a Trans-European Survey Report (TEUSURE) operate on the micro-level
of concrete experiences of family care. Data collection and analysis are done empirically.
National Background Reports (NABARE) and a Pan-European Background Report (PEUBARE) cover
the macro-level of national and European policies and their implications. Data collection is predominantly
done through secondary analyses.
Both the micro-level and the macro-level activities feed into a research action on the
meso-level, i.e. the level of regional particularities, local interaction and interdependency
between families and services, local authorities etc. (REACT). The
study is complemented by a Socio-economic Evaluation (ECO) and a
European Policy Analysis.
NASUR = National In-Depth Surveys in six core countries (Germany, Greece, Italy, Poland, Sweden and United Kingdom)
Target Group:
-
In each core country, up to 1,000 family carers are visited at
home and interviewed face to face using a common
assessment tool, amounting to a total of 6,000 cases.
-
Cared for persons must be 65 years and older and in need of at least 4 hours of
personal care or support per week.
-
In order to incorporate regional differences in each of the participating
countries, sampling is undertaken in at least three different sites, representing
rural and urban areas.
-
Differences in gender, ethnic groups, religious communities, age groups, economic
status and states of educational level are being accounted for.
-
In addition, professional care service providers are asked about their views and experience
with family care in telephone interviews and/or postal questionnaires, using semi-structured interview guides.
Instruments used in the national surveys (complete or in parts):
a) Assessing the needs and well-being of the dependent elderly:
- BISID
- Proxy Dementia Scale
b) Health and quality of life of the caregivers, characteristics and support
needs of the caregivers:
- COPE Index
- WHO-FIVE Well-Being Scale
c) Assessing current knowledge, usage, experience and acceptability of
available support services by the caregivers, estimated through indicators
assessing the following dimensions:
- Service knowledge and preferences
- Possibilities of getting support
- Frequency of service use
- Satisfaction with service use
- Acceptability of service
- Social Validity Scale
d) Assessing direct and indirect costs resulting from the elderly person's dependency
and care:
- Expenditure of public bodies on long-term care (total and per capita) according to type of care
- Rates for professional services
- Expenditure of families for professional services
- Expenditure by family carers for support care services (migrant carers, cleaners, neighbours)
- (Shadow) costs for family care (estimates)
e) Assessing characteristics and objectives of services:
- Questionnaire for telephone and/or postal interviews with service providers
Data analysis
- Data is analysed on a national and a European level.
- A combined analysis of quantitative and qualitative data is conducted on the national level, contained in the respective NASURs.
- For the analyses on the European level, the meta-analysis approach is applied in order to compare cross-national data sets of the total 6,000 cases and to achieve a pan-European interpretation of results on the various social, behavioural and psychological levels.
- Through integration of triangulation strategies, comparisons can be made between different countries and different cultures.
- Basis for the meta-analysis is the definition of independent variables concerned with all types of support (not) received by the caregivers from service providers and other formal and informal sources of support, dependent variables related to the situation of the caregiver that measure the burden of care, and moderator variables that explain the situation of the caregiver or carer and influence the effectiveness of each support measure, thus reducing the care burden.
Related Workpackages: WP1, WP2,
WP3, WP4, WP5,
WP6, WP7, WP8.
TEUSURE = Trans-European Surveys Report
- Is based on the national surveys
- Offers a European perspective
- Describes a set of good practice examples
- Gives a typology of family care situations showing regional differences and commonalities, best and worst cases
- Results described in the TEUSURE inform respective national data sets to add necessary in-depth information (qualitative data).
Related Workpackages: WP8.
NABARE = National Background Report
- Contains secondary data analysis and/or information gathered from expert-interviews and/or focus groups, drawing from a network of service providers and expert witnesses, public and private service providers, elderly and caregivers' organisations, health and social care authorities etc.
- Compiled in 23 European countries including the six core countries
- Structured in order to be comparable to other NABAREs (according to a Standardised Evaluation Protocol (STEP))
- Reviews existing information on available support services (characteristics and coverage) and existing knowledge on the main support needs of caregivers and the cared for elderly
- Provides information about the state of family care and its support in the respective countries, addressing variations in availability and use relating to different regions, ethnic groups, religions, "social classes" etc. If possible, further information is given concerning aspects of efficacy and efficiency.
Related Workpackages: WP10, WP11, WP13.
PEUBARE = Pan-European Background Report
- Synopsis based on NABAREs
- Written by members of the core group
- Contains and compares current information concerning the situation of European family carers' (non-)support and (non-)expertise in the years 2003/4 with respect to the variety of different social, health and welfare systems
- Will be published in a printed and electronic version
Related Workpackages: WP14.
ECO = Socio-Economic Evaluation
- Uses data from the national background reports and from the six national in-depth surveys
- Estimation of direct and indirect costs of care including public and private spending (private costs are calculated as expenses on professional services, time spent on care evaluated by a shadow wage and loss of income through reduction in work participation).
- Cost-effectiveness analyses (CEA): correlate the potential of support measures to improve the situation of the caregiver to the respective expenses. Allow to identify those measures with the best ratio of improvement for money.
- Cost-utility analyses (CUA): take fiscal effects of support measures on long term care financing institutions into account. Are based on a) an estimation of the reduction of the risk of institutionalisation (which results in savings in the public purse), b) a calculation of the fiscal consequences of home care as compared to nursing home care (for all public financing systems) and c) a calculation of the net savings for each support measure as the savings resulting from a reduction in nursing home care minus the expenditure for the respective support measure.
- CUAs can only be done on condition that the amount and quality of data about services used and on offer meet statistical requirements. Given the high non-usage of professional services in some countries it has to be assumed that CUAs may not be feasible.
Related Workpackages: WP9.
- Includes the perspective of European decision-makers. Their experiences with regard to opportunities and barriers for the support of family care are cross-checked with national findings and experiences.
- A set of benchmarks is identified to monitor the development of any implementation and to assess the quality of interventions.
Related Workpackages: WP12.
REACT = Research Action
- Intends to stimulate a change management process
- Takes the form of a qualitative consultation with a network of service providers and privileged witnesses, public and private service providers, elderly and caregivers' organisations, health and social care authorities etc.
- Informs the network about the main results emerging from the NASURs
- Collects and evaluates interpretations of NASURs' results by service providers, elderly and caregivers' organisations as well as other health and social care authorities,
- Promotes and clearly identifies concrete steps for improving the current system of support services and policy measures
- Intends to stimulate participants to support the European Carers Day
- Aims at recruitment of participants for the European Conference
Related Workpackages: WP15, WP16.
German
Italian