Experiences from involving service users in research-and-development-projects

1. Experiences from involving service users in research-and-development-projects 27th of april 2007, Göteborg, Sweden Per-Åke Karlsson and Elizabeth Hanson Research-and-Development-Unit for Elderly (ÄldreVäst Sjuhärad) per-ake.karlsson@hb.se, elizabeth.hanson@hb.se 1

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3. 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 3

4. 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 4

5. 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

6. 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 Highest Devolve – hand over decision-making and resources (Audit Commission 2004)

7. 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)

8. 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’ End of life care for older people with chronic illness and their families

9. 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’ End of life care for older people with chronic illness and their families

10. ACTION: Assisting Carers using Telematics Interventions to meet Older persons’ Needs ACTION call centre ACTION-programmes + + + Education & support ACTION-station + www.actioncaring.se

11. 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

12. User involvement in health care and social care for older people and disabled people and their families5 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” 12

13. User involvement in health care and social care for older people and disabled people and their families5 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) 13

14. 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!!! 14

15. 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: per-ake.karlsson@hb.se or elizabeth.hanson@hb.se Relevant references in English