Experiences from
involving service users
in research-anddevelopment-projects
27th of april 2007, Göteborg, Sweden
Per-Åke Karlsson and Elizabeth Hanson
Research-and-Development-Unit for Elderly
(ÄldreVäst Sjuhärad)
[email protected], [email protected]
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The ÄldreVäst Sjuhärad
R&D-centre
Funded and supported by:
• seven Municipalities (Bollebygd, Borås,
Herrljunga, Mark, Svenljunga, Tranemo,
Ulricehamn)
• the County Councils of West Sweden
(Västra Götalandsregionen)
• University College of Borås
• National Board of Health an Welfare
and
• Voluntary organisations
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The overall aims
• promote co-operation and partnerships
• enhance the sharing of perspectives
and experiences
• increase the opportunities for
professionals, older people and people
with disabilities to take part in research
and development
• raise the awareness and competence of
care professionals in social care and
health care
• R&D-projects
• develop competence
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Our work with user
involvement – a short history!
• The work covers roughly a ten year period
• Active listening to the views and experiences of
the key stakeholders lies at the centre of our
work
• In particular, listening to the views of older
people with chronic illness and their family
carers
• This forms the basis of our model, called the
ÄldreVäst Sjuhärad model, that has helped us
in our R & D work (see handout, ’Let research
work for you’).
• So, listening has been the first crucial step on
the path towards working together with all key
stakeholder groups
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The why and what of ‘user’
involvement
Why?
• Listen to older people themselves
• Give older people more choice and control
What?
Lowest
Inform
–
tell people what has
already been decided
Consult
–
ask people before you
make up your mind
Participate
–
work together to introduce
change
Delegate
–
let older people decide for
themselves
–
hand over decision-making
and resources
Highest Devolve
(Audit Commission 2004)
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Examples of actively listening
to older people and their
family carers
• The ÄVS survey 2001: a representative survey,
random sample, 11,222 people 65+ living in
West Sweden
• Follow-up interviews with 125 older people with
chronic illness living at home
• Both these studies helped us to identify the
needs of older people with chronic illness and
their family carers in Sjuhärad
• In turn, they led to further R & D work to
improve existing care services and also to create
new and more responsive care services for older
people and their family carers living in Sjuhärad
(Magnusson & Hanson, 2006; Sennemark, Hanson & Magnusson, 2004)
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End of life care for older people
with chronic illness and their
families
• A working group was set up
to develop local standards
for end of life care of older
people and their family
carers in Tranemo
municipality
• diverse group members
• working method based on
the 4 cornerstones of
palliative care based in
research & policy
• active listening & taped
discussions
(Brovall, Hanson et al 2004)
’We feel that our way of
working can be used in other
municipalities to develop their
end of life care for older people
and their families’
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End of life care for older people
with chronic illness and their
families
• draft statements presented
at an open meeting in the
municipality
• final agreed version acted as
a base for further local work
by different stakeholder
groups
• it is currently used:
- as a checklist by care
workers in the municipality
- for group discussion sessions
for care workers following
the death of an older person
at home or in a nursing
home
(Brovall, Hanson et al 2004)
’We feel that our way of
working can be used in other
municipalities to develop
their end of life care for older
people and their families’
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ACTION: Assisting Carers using Telematics
Interventions to meet Older persons’ Needs
ACTIONprogrammes
+
ACTION
call centre
+
+
ACTION-station
Education &
support
+
www.actioncaring.se
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Main lessons learned
along the way!
• Sufficient personnel and financial
resources:
– time, time and even more time
– reimbursement for participants’ time,
travel costs, meals & refreshments
– escort transport & disabled friendly facilities
– skilled, competent facilitators with regular,
supervision by scientific leader in the field
• Active sustained support from decision makers
• Clear, agreed roles and expected outcomes at the
outset of the project, open to negotiation over time
• Education and support to enable all stakeholder
groups to be active participants in R & D work
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User involvement in health care and
social care for older people and
disabled people and their families
5 credits (7,5 ECTS credits). Social work, Introductory level
Aim:
• To give basic knowledge about user involvement from
a national and international perspective.
• Learning out-comes, some examples:
– describe and understand concepts in the field from a
user and a democratic perspective
– identify differences between user involvement and
voluntary work
– describe and understand the concept of empowerment
– describe and understand what it means to work in
partnership
– understand the importance of user involvement in
students “home-organisations”
– develop capacity for user involvement in students
“home-organisations”
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User involvement in health care and
social care for older people and
disabled people and their families
5 credits (7,5 ECTS credits). Social work, Introductory level
– 50 students
– professionals from health and social care, older
people, disabled people, from voluntary
organisations – from 25 years to 78 years old
--- a mix
– part time studies
– lessons – theories and examples
– seminars
– group work or individual work
– alternatives:
• make a plan (short PM) for how to develop user
involvement in your organisation
• reflections on your experiences of user involvement
(also a short PM)
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Out future plans
A doctoral/master course:
“User involvement within health and social care research
for older and disabled people, their families and
practitioners” (7,5 ECTS)
– multidisciplinary focus
– doctoral students
– master students
– from R&D-centers
– class sessions, workshops, seminars
– take place at different universities in different countries
Preliminary collaborators:
– ÄldreVäst Sjuhärad at University College of Borås
– University of Sheffield
– Karlstad University
– Hedmark University College, Norway
Your are invited!!!
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Relevant references in English
• Hanson, E. et al (2006). Developing a model of participatory
research involving researchers, practitioners, older people and
their family carers: an international collaboration, Journal of
Research in Nursing, 11(4), 325-342.
• Nolan, E., Hanson, E., Grant, G. & Keady, J. (Eds). (In press).
User Participation in Health and Social Care Research: voices,
values and evaluation, Open University Press/McGraw-Hill
Publications. To be published October 2007.
For more information, please contact:
[email protected] or [email protected]
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