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									 Levels of involvement

   Levels of involvement in research can range from:


                                     User control
Birmingham Heartlands & Solihull

              NHS Trust (Teaching)
   Designing and doing
     Outline exactly what you are going to do and how in a
         research and development project. You must decide:
           What the specific research question is and being able to
              explain why it is important
           Who is going to be involved and how many of them:
                 Which specific groups of people?
                 Where you can find them?
                 How you will invite them to take part?
           What information you want to collect
           How you will collect that information
           How you will analyse that information
Birmingham Heartlands & Solihull

              NHS Trust (Teaching)
   The research question
   You must be very clear about your research question – for
       example you may tell people that you are doing:
         research in diabetes but the actual question is: Which
            combination of treatments for childhood diabetes lead to the
            best outcomes for good management of the disease?

         or, research on supporting families when a family member is
            dying, but the actual question is: What elements of palliative
            care provide the most assistance in helping family members
            deal with their grief?

         the question may be even more specific than that – what is
            important is that it is clear enough to guide all the other
            aspects of the design
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   Why is the question
   When you are explaining why the research is important,
       that is when you read what other research has been done
       on the specific area as well as areas closely related to it -
       this is called a literature review:
   You need to read things like:
         Research reports and discussions in professional journals
         Books on the topic
         Government or project reports in the area
         Information on the Internet
         Papers given at conferences and seminars
Birmingham Heartlands & Solihull

              NHS Trust (Teaching)
   Who is going to be
   Specific groups of people – this may be based on their:
         Age
         Gender
         Health or social issue
         Type of treatment or care they receive
         Cultural identity
         Life experience
         Location – city, town, rural, remote
         Living situation – stable, unsettled, homeless
         Place they live – own house/flat, nursing home, foster care,
Birmingham Heartlands & Solihull

              NHS Trust (Teaching)
   Who is going to be
   Finding them – you need to know where these groups of
       people are and how far you need to go to find them.
         Are they anywhere in the UK?
         Are they in your health region?
         Do they just use your health or social service or a particular
            part of the service?

   This may depend on how big or small your project is – or
       how much detail you want to gain
         The more information you want to gain and analyse, the
            more likely that you will work with a smaller group of people
Birmingham Heartlands & Solihull

              NHS Trust (Teaching)
   Who is going to be
   Inviting people to take part – there are different methods
       for doing this. For example:
         Writing to the health and social service or organisations where you
          can find these people
         Writing to all people in a health and social service or unit
         Putting up posters or handing out flyers at places where the
          people are found
         Advertising by newspaper, radio or TV
         Talking to relevant groups where the people may be found and
          inviting people to volunteer
         Using your own, health and social services staff or user and carer
          personal networks
         Once people are interested ask them to talk to others and
          encourage them to be involved, or suggest others you can contact
Birmingham Heartlands & Solihull

              NHS Trust (Teaching)
   What information do you
   The information you want depends on what you need to know so you
       can answer your research question. This is not a complete list, but it
       may be things like:
         Type, seriousness and length of the health or social problem
         Results of medical tests or assessments
         Measures of your body function, blood or other body fluids
         Information on your personal behaviour
         Opinions on the services or care a person receives
         Stories of how the health and social service problem affects
            people, or how people cope with it
         Types and lengths of treatments
         Effectiveness of treatments
Birmingham Heartlands & Solihull

              NHS Trust (Teaching)
   How will you collect the
 Number based information = quantitative:
        Standard tests where you:
              Answer questions and are judged on how accurate you are
              Identify how many problems you do or do not have or how bad
               they are
              Have parts of your body, blood or fluid tested or observed
        Surveys where information is turned into numbers by
           answering questions with tick boxes or ratings scales
        Observation where a person’s behaviour or an event is coded
           and then counted up
        Checklists where things are ticked of if they did or did not
Birmingham Heartlands & Solihull

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   How will you collect the
 Word based information = qualitative:
        Personal interviews or focus groups:
              Standard questions that everyone is asked
              Main questions to guide the interview but other questions come
               up during the conversations
              A main topic and the conversation can flow around it

        Surveys where people’s written answers are interpreted
        Observation where a person’s behaviour or an event is
           described and then analysed
        Case studies that focus on the story of one person or
Birmingham Heartlands & Solihull

              NHS Trust (Teaching)
   How will you analyse it?
   Analysing the research information means making sense of it. You
       have to decide what is the best way to make sense of it to see what it
       tells you.
   You have different ways of doing this depending on the type of
       information you have
   A common way of analysing number-based information is using a set
       of mathematical procedures called statistics. This ranges from doing:
         basic things like adding up how often something happened, or
         working out the averages, to
         calculating whether changes in one area are related to changes in
            another area (called correlation), or
         the differences are due to the change or treatment that was given
            (called significance)
Birmingham Heartlands & Solihull

              NHS Trust (Teaching)
   How will you analyse it?
   Common ways of analysing word-based information are:
         Re-organising it into smaller parts or categories to analyse –
            this is called looking for themes
         Identifying both common themes and specific issues
         Looking at what people are telling you:
               What are the important meanings?
               Why are they important to them?
               What is missing from their story? Why?
         Looking at how people are talking and explaining things:
               Is there are particular pattern to how people tell the story?
               What does this tell you about how they think and feel?
Birmingham Heartlands & Solihull

              NHS Trust (Teaching)
   Why is this stage
    User involvement in doing research and development is
        important because:
          If user perspective is not included in the research design, it
             is much harder to build it on once the project is underway

          User consultants can identify the questions or issues that
             may be of most relevance to the people who will participate
             that researchers do not always think of – this can affect
             whether or not people take part

          User consultants may have good ideas for getting people to
             participate in the project – they may have personal
             networks to use when you are trying to involve people who
             are difficult for researchers to reach
Birmingham Heartlands & Solihull

              NHS Trust (Teaching)
   Why is this stage
    It is also important because:
          User consultants may gain information from participants
             that participants would not tell to researchers

          User consultants can make sense of research information
             that researchers may not think is important or do not
             understand easily

          User consultants may have specific expertise or skills in
             the research area that it is not possible for researchers to

Birmingham Heartlands & Solihull

              NHS Trust (Teaching)
   A research seesaw

                                     What can you do to
                                      avoid or manage
                                     problems in doing

      What could cause
      a problem in doing

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   Being a researcher
     What is your position – learner or expert?
           Your role is to learn about the area you are looking into – you
              are not there just because you think you know the answers
              already and just want some evidence to back them up

     What is your identity – who are you as a person?
           ‘Who you are’ influences the research because your identity
              shapes how they see the world
           You cannot be neutral although some researchers still like to
              think can be. The best you can do is be aware of how your
              identity helps or stops you from seeing things that are
              important to other people who are a lot or a little different to
              you – particularly people who are participants in the project
Birmingham Heartlands & Solihull

              NHS Trust (Teaching)
   Being a researcher
     What are your values? You must be aware of you personal
         values and that they will come out in research. This affects:
           what research you decide to do
           what research questions you ask
           how you decide to do the research
           who you include
           how we make sense of the research information we gather

     Having the right skills – you bring skills to research but
         usually need training in other skills too. This can happen via:
           training courses and reading books and research guides
           doing it hands-on with mentors and role-models

Birmingham Heartlands & Solihull

              NHS Trust (Teaching)
   Ethical principles
     Honesty:
           Being honest about the results of the research, what happened
              and getting the results to people who need to know about them

     Respect:
           Showing respect for the people who participate in research their
              personal and physical welfare, rights, beliefs, perceptions,
              customs and cultural heritage at an individual and group level

           Not discriminating against a person or group being involved,
              unless you are only looking at the difference between specific
              groups of people
Birmingham Heartlands & Solihull

              NHS Trust (Teaching)
   Ethical principles
     Do no harm:
           Research and development should not result in physical or
              emotional harm or lead to a loss of dignity, independence or
           If there is risk of harm you must say how you will avoid it, or
              deal with it if it happens

     Benefits or research merit: This is about how worthwhile it is
         to do the research – can it be justified? You need to answer
         questions like:
           What contribution will it make to people’s lives?
           Will the benefits of doing this outweigh the risks?
Birmingham Heartlands & Solihull

              NHS Trust (Teaching)
   Ethical principles
     Justice:
           There are both benefits and burdens if a person is participating
              in research – these need to be a fair sharing of these across
              people in any society
           If the same group of people are targeted as participants, they
              carry more of the burden and gain less benefit compared to
              those who are not participating yet benefit from the research

     No deception:
           This means that there are no surprises
           You will be upfront about what is required of the person and
              what will happen to them in the project

Birmingham Heartlands & Solihull

              NHS Trust (Teaching)
   Ethical principles
     Informed consent:
           Participants need accurate and clear written information
              on what they are being asked to do and what are the
              likely consequences for them if they choose to participate
           Researchers must get the right balance in providing this
              information and avoid using technical and difficult
              language - if the information is too overwhelming the
              person will not read or understand it anyway
           Participants need to understand that they can withdraw
              from the research at any time without negative

Birmingham Heartlands & Solihull

              NHS Trust (Teaching)
   Ethical principles
     Confidentiality:
           Participants need to know how recognisable or not their
              personal identity will be in the presentation of research
              outcomes and who has access to the research information.
           Researchers must explain how they will protect people’s

     Privacy:
           Sounds similar to confidentiality, but it means the personal
              space that is or is not off-limits for the research to inquire into
           Participants must have the right to refuse to discuss or respond
              to issues/questions about which they are not comfortable or
              consider private
Birmingham Heartlands & Solihull

              NHS Trust (Teaching)
   Example 1 – Peer interviewers
   as project team members

         A research team wanted to find out about the
             views and experiences of parents who use illegal
             drugs in using health and social services

         They would share their outcomes with local
             health and social services so the needs of this
             group could be better met.

Birmingham Heartlands & Solihull

              NHS Trust (Teaching)
   Setting up the project
  The project covered two local areas – they identified
      suitable people to be ‘peer researchers’ in this way:
        In Area 1 the researchers approached:
              a Community Drug Team who had volunteers who were
               former drug users and were now leading stable lives
              they discovered that some of the volunteers had already been
               involved in conducting surveys in the local area
              they invited two to join the team

        In Area 2 they asked:
              local service providers to suggest suitable people who were in
               control of their drug use and could have the skills to be peer
               interviewers - two were nominated
Birmingham Heartlands & Solihull

              NHS Trust (Teaching)
   Roles of the user consultants
    The peer researchers used their networks to encourage
        people to participate in the research who do not
        currently use services, as well as those that did

    They interviewed all of the former drug users or people
        who did not use services, and some of the people
        currently using services

    They assisted the researches to make sense of –
        analyse – the information that was gained in the

Birmingham Heartlands & Solihull

              NHS Trust (Teaching)
   Support provided to user
    : All peer researchers received:
          personalised training, either individually or in pairs

          were debriefed after every two or three interviews

          with their agreement the researchers stayed in contact
             with the peer interviewers’ key workers to support them
             remaining drug free while in contact with other drug users

          a fee for each completed interview, and an hourly rate for
             attending training and meetings

Birmingham Heartlands & Solihull

              NHS Trust (Teaching)
   Level of influence or
    Peer researchers were involved throughout the research
        in discussions on:
          the design of the interview guide
          the themes coming out of the interviews
    They influenced the analysis of the interview information
        using their personal expertise about being an illegal
        drugs user – the language and meanings commonly
    They did not have a strong role in the final report or
        other things written on the project
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   Activities that happened
    The whole project team did 52 interviews of drug-using
        parents, including people who did and did not use

    The researchers analysed this information with
        assistance from the peer researchers

    The researchers developed a report with
        recommendations for local services.

    They also wrote a journal article, but with no input from
        the peer researchers.
Birmingham Heartlands & Solihull

              NHS Trust (Teaching)
   Outcomes achieved
   The research project was able to:
         reach members of a hidden and reluctant group
             who would be difficult or impossible for the
             researchers to reach in any other way

         collect data quickly due to the peer researchers’
             local knowledge - this helped meet the needs of
             the health and local authorities who wanted to
             do something about the issue soon

Birmingham Heartlands & Solihull

              NHS Trust (Teaching)
   Strategies for success
    Choosing people who already had some experience in
        volunteer or research roles
    Investing time to build a relationship of trust between
        the peer researchers and the staff researchers

    Debriefing sessions were a valuable opportunity for the
        researchers to learn about the language and culture of
        drug-users from the peer interviewers

    Learning to negotiate roles and areas of expertise,
        which was less easy for the researchers to do as they
        were used to having a more powerful position in
Birmingham Heartlands & Solihull

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   Problems that occurred
    Peer researchers needed higher support than expected

    Peer researchers did not insist on interviews being taped
        when participants were uncomfortable

    Peer researchers knew that spending time with drug-
        users created a risk for them of wanting to start using

    Difference of opinions on whether or not peer
        researchers would get a truer story from participants

Birmingham Heartlands & Solihull

              NHS Trust (Teaching)
   Benefits achieved
    The project involved a diverse range of user consultants
        in terms of their personal backgrounds and where they
    Researchers learned about language and meanings in
        drug use that they may not understand and would limit
        the areas discussed during interviews

    Improving the interpretation of the interview information
        using the expertise of the peer researchers

    Researchers learned about how much they and the peer
        researchers could share with each other

Birmingham Heartlands & Solihull

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   Thinking about practical issues
   – what does it mean for you?

   1. Number of user consultants involved
   2. Costs of involvement
   3. What is the user consultant role description?
   4. Being prepared for the role
   5. At what stage are user consultants involved?
   6. Office space or equipment
   7. Number of methods for gaining user involvement used
Birmingham Heartlands & Solihull

              NHS Trust (Teaching)
   Thinking about practical issues
   – what does it mean for you?
 8. How much information you receive
 9. Handling confidential information
 10. Training
 11. Mentoring
 12. Your connection to a network of other users, carers, the public
 13. Debriefing opportunities or support
 14. Opportunity to reflect on what you learn
 15. Dealing with personal difficulties
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