Extraordinary General Assembly
Brussels, 16 November 2010
Update report on
EUROCARERS research
Giovanni Lamura, EUROCARERS vice-president for research
*: INRCA (Italian National Research Centre on Ageing)
Centre for socio-economic research and elder care
Ancona, Italy
^: European Centre for Social Welfare Policy and
Research, Vienna, Austria
Outline of presentation
1. Research activities
a. Past
b. Current
c. Planned
2. Proposals for the future
1.a Past activities
• 2008: EU-funded report on “Care provision
within families and its socio-economic
impact on care providers” by University of
York (England, UK) and Vilans (NL)
(http://www.york.ac.uk/inst/spru/research/pdf
/EUCarers.pdf)
• Role of EUROCARERS: its network of
research members was contacted to provide
basic information used to prepare the report
(secondary data analysis)
1.b Current activities (1)
•
•
SCA (Swedish based private company in
the field of care products) has granted
EUROCARERS 84.000 Euros to carry
out Europe-wide research on “Quality of
life in caregivers of dependent people
affected by incontinence”
4 EUROCARERS research members
have been involved in the study:
1.b Current activities (2)
• Southern Europe: INRCA (Italian
National Research Centre on Ageing)
(research coordinator)
• Western Europe: Vilans (Netherlands)
• Northern Europe: Swedish National
Family Care Competence Centre
• Eastern Europe: Institute for Labour and
Family Research (Slovakia)
Qualitative interviews by geographical area, type of impairment
suffered by the cared-for person and severity of incontinence
Cognitively impaired
Region
Physically impaired
Less severe More severe Less severe More severe
incontinence incontinence incontinence incontinence
Total
Scandinavia
4
4
4
4
16
West. Europe
4
4
4
4
16
South. Europe
4
4
4
4
16
East. Europe
4
4
4
4
16
16
16
16
16
64
Total
1.b Current activities (3)
• Qualitative study is currently being carried out
• National reports are expected by next January
2011
• Comparative report expected by April 2011
• Presentation of findings at next EUROCARERS
General Assembly in May 2011
1.c Planned activities (1)
• EUROCARERS has been asked to be involved in a project
proposal on “ICT- based solutions for informal caregivers:
assessing their impact on the sustainability of long-term care
in an ageing Europe“ (coordinator: European Centre for
Social Welfare Policy and Research in Vienna)
• Tasks to be performed by EUROCARERS:
– Participate to 3 meetings
– Provide expertise to advise the partnership along the
study, especially during its implementation and for the
clarification of methodological issues
• Amount granted to EUROCARERS:
– 4.070 Euros for 11 working-days of expert advice
– 1.600 Euros for meeting costs (travel & subsistence)
• Deadline to know whether the project will be funded:
beginning of December 2010
1.c Planned activities (2)
Other EUROCARERS partners involved in the project (if funded):
• Continental (corporatist) system: European Centre for
Social Welfare Policy and Research, Vienna, Austria;
• Anglo-Saxon (liberal) system: Sue Yeandle and Gary Fry
(University of Leeds, CIRCLE, England, UK);
• Mediterranean system: F. Marcellini, C. Chiatti & M. Di Rosa
(Italian National Research Centre on Ageing, Ancona, Italy);
• Scandinavian system: Elisabeth Hanson and Lennart
Magnusson (Swedish National Family Care Competence
Centre, Sweden);
• Eastern Europe: Zsuzsa Szeman (Institute of Sociology,
Academy of Sciences, Budapest, Hungary).
2. Proposals for the future (1)
Rationale: As stated in several
occasions during the last year, a clearer
“research strategy” for EUROCARERS
members is considered to be necessary,
as a tool to facilitate a more efficient
achievement of the association’s aims,
and should be strengthened in the future
2. Proposals for the future (2)
The role of research within Eurocarers is formally
recognised by its Statute as a crucial tool to
achieve three core “institutional” aims:
1. gather data to improve scientific knowledge
about the role of unpaid carers in society (including
good practices and innovations in supporting them)
2. disseminate this information, by publishing it
and through the education of different target
groups (carers, professionals & other researchers)
3. promote evidence-based policy developments
(at both a national & European level).
2. Proposals for the future (3)
1) gather scientific data:
• SCA-funded study
• IPTS-study (if approved)
Short-term, low budget !
• Proposal A (top down): consider a possible
follow-up or update of large scale data collections
(such as for instance the EUROFAMCARE project
in 2004-2005, from which EUROCARERS
originated), with a much stronger role for our
association;
2. Proposals for the future (4)
• Proposal B (bottom up): There might a need for carers’
organisations to know more about the situation of carers
across Europe (than what is for instance already contained in
the “Fact Sheet”). It might be therefore worthwhile to ask
carers’ organisations which additional information they
need, e.g. in order to be more effective in their everyday
activities, both at an individual (i.e. carer’s) level and
organisational level (helpful to understand what expectations
carers’ associations might have towards research);
→ (“Blue sky” approach) Can information needs by carers’
organisations be systematized and prioritised in a sort of
research programme, to be carried out by research
organisations (distinguishing between what is already
available and new information needed)?
2. Proposals for the future (5)
The role of research within Eurocarers is formally
recognised by its Statute as a crucial tool to
achieve three core “institutional” aims:
1. gather data to improve scientific knowledge
about the role of unpaid carers in society (including
good practices and innovations in supporting them)
2. disseminate this information, by publishing it
and through the education of different target
groups (carers, professionals & other researchers)
3. promote evidence-based policy developments
(at both a national & European level).
2. Proposals for the future (6)
• Internal: EUROCARERS needs a “light
informational infrastructure” to improve the
transfer/exchange of knowledge between its two
components: could e.g. a newsletter or a database
of existing knowledge in this field (containing
available basic 'facts and figures' on caregiving,
carers and related issues) be helpful?
• External: In the long-term, once established, the
newsletter/database could become available also to
external users.
2. Proposals for the future (7)
The role of research within Eurocarers is formally
recognised by its Statute as a crucial tool to
achieve three core “institutional” aims:
1. gather data to improve scientific knowledge
about the role of unpaid carers in society (including
good practices and innovations in supporting them)
2. disseminate this information, by publishing it
and through the education of different target
groups (carers, professionals & other researchers)
3. promote evidence-based policy developments
(at both a national & European level).
2. Proposals for the future (8)
how can researchers be better involved in the
preparation, discussion and delivery of
documents, position papers and papers to
different audiences/targets (a task so far
mainly covered thanks to Christine Marking’s
efforts)?
2. Proposals for the future (9)
Three organisational issues:
1. should the current ratio between research and
carers’ organisations be maintained/changed?
According to the statute, the representation of
research organisations within the association’s
structure must be ensured, but remains in a
(quantitatively and organisationally) subordinated
role compared to that of carers’ organisations.
Current situation: the number of research
organisations reaches 21 (i.e. 36%) of the total of
58 members.
2. Proposals for the future (10)
2. how can a good, systematic interaction
& dialogue between carers’ and
research organisations be maintained
over time?
– a periodical newsletter (see above)?
– other means (e.g. on-line forum, chat
lines or other ICT-supported solutions)
– and how sustainable in the long run?
2. Proposals for the future (11)
3. Carers’ organisations belonging to
Eurocarers represent a potentially
relevant source of information for
research on informal care: do we need
to start regulating requests made to
EUROCARERS to collaborate in
future research projects (as recently
happened with regard to tender on ICT
initiatives for carers)?
Thank you!