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Levels of involvement

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Supports many user-led research projects across the UK: ... and resources on doing research, e.g. the DIY Guide to Survivor Research ... – PowerPoint PPT presentation

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Title: Levels of involvement


1
Levels of involvement
  • Levels of involvement in research can range from

Consultation
Collaboration
User control
1A
2
Disseminating research
  • Disseminating is getting the message about
    research and development projects and their
    outcomes out to people who need to know about it
  • When disseminating research you need to think
    about
  • Methods - ways that you will get the message out
  • Audience who you need to reach
  • Level of user involvement what tasks and how
    much of them you get to do

1B
3
Methods for disseminating research
  • Common or standard ways are
  • Writing reports
  • Writing a summary of the larger report
  • Publishing in professional journals, magazines or
    on Internet websites
  • Publishing in user/carer association newsletters,
    magazines or on Internet websites
  • Writing a chapter in a book or writing a whole
    book
  • Conferences or seminar papers and workshops
  • Presenting a poster at a conference or seminar
    a short summary of the research and its
    outcomes on a large poster

1C
4
Methods for disseminating research
  • Different ways include
  • Writing a leaflet or short brochure (2-4 pages)
  • Creating a poster that gives a summary of the
    project using words and pictures
  • Running community forums to present and discuss
    the outcomes
  • Speaking at Patient Forums, user/carer
    associations, self-help groups
  • Holding workshops and inviting specific groups
    who may be interested in the research
  • Talking on radio this may include inviting
    people to call in and discuss the outcomes with
    you
  • Appearing on TV
  • Creating a drama performance or role play

1D
5
Who is the audience?
  • It can include
  • health and social services staff and researchers,
  • university research groups,
  • government departments and local government
    shires,
  • private companies who are involved with health
    and social services through the focus of their
    own work or sponsorship,
  • users, carers and their associations,
  • the media, and
  • the public.
  • It could include particular industries
    restaurant or catering, mining, agricultural - or
    schools and childcare centres

1E
6
Levels of involvement
  • Users, carers and the public may be involved in
    several different ways
  • Some ways are examples of consultation
  • joining meetings or workshops to discuss the
    drafts of final versions with other people
    including health and social services staff,
    researchers and other users, carers and the
    public and to decide how the work should be
    disseminated
  • reading and providing comments on drafts or final
    versions of the documents by writing a review or
    talking to the authors

1F
7
Levels of involvement
  • Other ways are examples of collaboration
  • co-writing drafts or final versions of the
    documents you want to produce
  • co-presenting the outcomes at conferences
    seminars, patient forums, user/carer groups,
    community forums or invited workshops
  • giving an interview to the newspaper or on radio
    or appearing on TV together with a health and
    social services staff researcher
  • co-designing posters
  • co-developing drama performances possibly also
    being involved in performing them

1G
8
Levels of involvement
  • On some occasions they are examples of user
    control
  • writing drafts or final versions of the documents
    you want to produce
  • presenting the outcomes at conferences seminars,
    patient forums, user/carer groups, community
    forums or invited workshops
  • giving an interview to the newspaper or on radio
    or appearing on TV
  • designing posters
  • developing drama performances possibly also
    being involved in performing them

1H
9
Why is this stage important?
  • User involvement in disseminating research and
    development is important because
  • Users, carers and the public may be aware of
    audiences who need to hear about the research
    that health and social services researchers may
    not
  • User consultants can personally help share
    results through their personal networks,
    user/carer groups and associations
  • User consultants can advise health and social
    services researchers about the most effective and
    suitable ways of getting the message across - the
    language and the ways of presenting it
  • It demonstrates stronger commitment to user
    involvement in research and development if user
    consultants have a strong role in the
    disseminating stage

1I
10
Example 1 The Mental Health Foundation
Strategies for Living project
  • Strategies for Living began in 1997. It
  • Supports many user-led research projects across
    the UK
  • some of these are examples of user control
  • others are collaborative examples between users,
    carers and health and social services researchers
  • funds them and provides training and resources on
    doing research, e.g. the DIY Guide to Survivor
    Research
  • provides hands-on advice and support throughout
    every step the project, including writing the
    reports
  • publishes them on The Mental Health Foundation
    website

2A
11
Example 1 Strategies for Living The ups and
downs of bipolar carers
  • Lesley Jenkins is a mental health service user
    who lives with bi-polar disorder. She was funded
    by Strategies for Living to investigate the
    experiences, coping strategies and needs of
    carers who support a person with bi-polar
    disorder. She
  • did 13 in depth interviews with carers of people
    with bi-polar disorder,
  • analysed the information in the interviews
  • wrote a report where she emphasised the need to
  • increase awareness of carers needs with mental
    health services
  • ensure that carers get appropriate support and
    understanding

2B
12
Example 2 The Alzheimers Society Quality
Research in Dementia Network
  • They publish a monthly newsletter for the QRD
    Network which gives updates on the work of the
    network it is two to three pages long
  • Every 6 months they do a bumper research
    newsletter eight or so pages long that
    provides
  • what research they plan to or are funding and why
  • summaries of completed research projects
  • a list of all current projects
  • progress reports on some of the current projects

2C
13
Example 3 SURE Service User Research Network
  • User perspective is central to all of its work
    and almost all of its staff have been or are
    service users.
  • It has a program of research that includes areas
    such as
  • Consumers perspectives on electroconvulsive
    therapy
  • Users and carers experiences of continuity of
    care and relationship to health outcomes
  • User involvement in change management in health
    and social care services
  • Young people, mental health and primary care
  • It provides project summaries and progress
    reports on its Internet site

2D
14
Thinking about practical issues what does it
mean for you?
  • Number of user consultants involved
  • Costs of involvement
  • What is the user consultant role description?
  • Being prepared for the role
  • At what stage are user consultants involved?
  • Office space or equipment
  • Number of methods for gaining user involvement
    used

3A
15
Thinking about practical issues what does it
mean for you?
  • How much information you receive
  • Handling confidential information
  • Training
  • Mentoring
  • Your connection to a network of other users,
    carers, the public
  • Debriefing opportunities or support
  • Opportunity to reflect on what you learn
  • Dealing with personal difficulties

3B
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