Role of peer organisations in self-management support

This is another post in our series Reflections Careum Congress 2014. Here, guest author Marianne Ween shares her thoughts self-management support in chronic illness.

Reading about Kate Lorig’s participation in the Careum Congress 2014 has reminded me of the value of the program she represents, the Stanford Model. The model has given professional, academic support to the importance for patients to take action in governing their own lives, even if parts of their life is governed by a disability or chronic disease.

Insights from Norway – an ‘ocean’ of peer competence

Both health personnel and peer organisations have profited from the program in Norway. Over the course of the last ten years, thousands of Norwegians have participated through our licence. We have remained faithful to the structures of the program but have become increasingly aware of a need to adapt and change it thus finding our own way. The foundation for this work has been peer organisations and the hard-earned competence of their volunteers.

Studieforbundet Funkis, my workplace, supports learning and competence in our 67 member organisations. Each member represents one or more disabilities or chronic diseases, and together they organise 320.000 individual members. This is the pool – or ocean – of competent people we invite to develop new programs, programs that we make available for the organisations to use in their turn. These organisations also give us the possibility to disseminate the knowledge we have developed. The traditional high level of organisation in the Norwegian society means that most people with disabilities or chronic diseases have a connection to a peer organisation.

Moving on to new ways of self-management support

The group designing our new program are all peers; have all participated in the Stanford courses, are trained leaders and have the support of their organisations behind them. This ensures empowerment on several levels: Personal, group and system, and gives to Funkis a guarantee the new program is peer initiated, developed and tested.

I believe that respect for peer competence gives the depth to our program that the Stanford Model lacks. I certainly see what differences our model is given, differences I ascribe partly to the fact of peer control: Two important changes are: They put less weight on medical and ‘expert’ advice, and more emphasis on how to continue governing your life after the course is completed. But most important: Peer leadership of the courses, peer control of leadership development and compulsory peer support throughout the course. The strong support of their organisations for our peer representatives has given them the confidence to make these changes. In addition, their work would not have such a great impact if the organisations did not support this collective work.

Respecting peer competence

This way of working has also given me, privy to the process, an even greater respect for peer competence, especially when channelled through the organisations. To work with peers using their experiences for a broader goal, to represent not only their personal challenges, but also that of their diagnosis group or even that of the disabled minority in our society – is humbling. Organisations with the will and the competence to change services, treatment and the society as a whole are invaluable to any who work in this field.

What are your thoughts on involving peers into co-creating self-management support? What are your experiences in terms of peer organisations? I am looking forward to your comments!


Guest author

Marianne WeenMarianne Ween
General Secretary of Studieforbundet Funkis, Norway

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Marianne Ween

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6 thoughts on “Role of peer organisations in self-management support

  • 2014-07-23 at 09:34
    Permalink

    I
    completely agree that peers have to be involved in the development of
    self-management programs or, even better, have all the right and should be
    encouraged to initiate new programs. If they are not involved, if their needs
    and expertise are not perceived, the programs will not hit the target, will be
    badly attended and vanish after a while.

    For me a question
    is: How can peers be involved without putting too much strain on them, without
    taking too much of their time. I mean, peers have a lot going on in their
    lives. The usual stuff like family, friends, work, hobbies. Plus they have
    their condition that needs time and attention. Now, if we invite them not only
    to participate in such programs, but to take an active part in their doubtless time-consuming
    development, we are also asking them to devote precious time to this.

    While
    health and other professionals usually have the privilege to take part in the
    development of such programs during their work time (and thus are even paid to
    develop programs), peers are often supposed to do this in their own time and
    for free. It is my opinion that an incentive and a tribute to peer work/peer
    contribution could, SHOULD be to reimburse peers for their participation. For
    instance, they—like professionals—could be paid for their involvement. They
    could also be released from their ordinary jobs for a certain amount of time to
    be able to participate in the development of such programs. I think, a lot can
    and still has to be done by health policy makers, insurance companies and
    society as a whole to improve peer involvement and the conditions for peer
    involvement.

    I have a
    question to Marianne: Could you elaborate on what you mean with: “I believe
    that respect for peer competence gives the depth to our program that the
    Stanford Model lacks.”

    In which
    respect does the Stanford Model lack respect for peer competence?

    Reply
  • 2014-07-23 at 09:55
    Permalink

    Hello
    Marianne

    Thanks for
    your thoughts on peers and peer involvement and giving an insight into the
    development in Norway.

    I
    completely agree that peers have to be involved in the development of
    self-management programs or, even better, have all the right and should be
    encouraged to initiate new programs. If they are not involved, if their needs
    and expertise are not perceived, the programs will not hit the target, will be
    badly attended and vanish after a while.

    For me a question
    is: How can peers be involved without putting too much strain on them, without
    taking too much of their time. I mean, peers have a lot going on in their
    lives. The usual stuff like family, friends, work, hobbies. Plus they have
    their condition that needs time and attention. Now, if we invite them not only
    to participate in such programs, but to take an active part in their doubtless time-consuming
    development, we are also asking them to devote precious time to this.

    While
    health and other professionals usually have the privilege to take part in the
    development of such programs during their work time (and thus are even paid to
    develop programs), peers are often supposed to do this in their own time and
    for free. It is my opinion that an incentive and a tribute to peer work/peer
    contribution could, SHOULD be to reimburse peers for their participation. For
    instance, they—like professionals—could be paid for their involvement. They
    could also be released from their ordinary jobs for a certain amount of time to
    be able to participate in the development of such programs. I think, a lot can
    and still has to be done by health policy makers, insurance companies and
    society as a whole to improve peer involvement and the conditions for peer
    involvement.

    I have a
    question to Marianne: Could you elaborate on what you mean with: “I believe
    that respect for peer competence gives the depth to our program that the Stanford
    Model lacks.”

    In which
    respect does the Stanford Model lack respect for peer competence?

    Reply
    • 2014-07-24 at 07:44
      Permalink

      Dear Marianne, dear Margot,

      thanks for your thoughts and insights, very helpful that you are sharing your experiences with the Stanford model.

      I do like how the importance of peer/patient engagement and competence as well as the need for health policy action are emphasized.

      One thing I am interested in learning more about is what are the new/different elements in the self-management approach you have developped in Norway, Marianne.

      Again, great input, thanks a lot. Joerg

      Reply
    • 2014-07-24 at 23:04
      Permalink

      Thank you for your response, and sorry for the delay in answering, I’m in Mexico and a little jeg-lagged, but:

      You hadd two questions, one is easy to answer:

      I do not think the Stanford Model lacks respect for peer competence, it is embedded in the peer support part of their model. What I meant that acually putting peers in the ‘director’s chair’, gives an extra depth to our program. Statistically, peer involvement changes the services, and peer management does the same, I would venture, for the better.

      To your second question about renumeration:
      I agree that peers should be paid, but not always in the same way as professionals. The peers we work with are actually not paid for the development process, as they act as volunteers on behalf of their orgainisations. They contrubute through meetings and seminars, whereas the acual design and programming and much of the production of texts and extra material ar developed and collected by my collegues in Studieforbundet Funkis. We will also do much of the work in organising pilots, and both we and the different organisations organise the actual courses. Under supervision of the peer group. Also, please bear in mind that a lot of the very competent peers do not actually have a paid job, and contribute to society through this volunteer work. I am sorry if a blog resopnse does not really allow the elaboration of all the factors involved. Peers are paid as leaders of the actual courses, of course, and that is where their finest competence is aquired.

      Thank you for making this blog come alive, these are very important and difficult questions, that I would love to further discuss.
      Marianne

      Reply
  • 2014-08-04 at 08:06
    Permalink

    Thank you for reminding us of the real power of peers.
    We have same experience in Denmark, though we haven’t created the Peers directors chair!!
    But the interesting question is, how to put the peers in the directors chair, and at the same time keep the support of the professional health care system.

    This connexion is a key stone to our succes in Denmark.
    Greetings
    Nicolaj Holm Faber

    Reply
    • 2014-09-23 at 09:28
      Permalink

      I heartily agree, Nicolai,
      We face similar problems in Norway, both the professional health care system, and also other arms and legs of the public sector hesitate to trust fully in peer competence. There are no problems as long as the peer organisations organise and are responsible for the courses, but once a hospital is responsible, they tend to want health personell to lead.
      I think the solution is just to go on with the good work, results will speak for themselves. At the same time it helps to discuss quality and organisation between us to hope our arguments and give mutual support.

      Reply

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