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Throughout Life With Cerebral Palsy: A Challenging Journey From Traditions into Modern Times

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Professor of Paediatrics, McMaster University, ... We recognize the reality that children with CP grow up to be adults with CP ... – PowerPoint PPT presentation

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Title: Throughout Life With Cerebral Palsy: A Challenging Journey From Traditions into Modern Times


1
Throughout Life With Cerebral Palsy A
Challenging Journey From Traditions into Modern
Times!
  • Peter Rosenbaum, MD, FRCP(C)
  • Professor of Paediatrics, McMaster University,
  • Co-Founder, CanChild Centre for Childhood
    Disability Research,
  • Canada Research Chair in Childhood Disability

2
Why Is This Issue (throughout life) Important?
  • We recognize the reality that children with CP
    grow up to be adults with CP (what Dr. Reidun
    Jahnsen refers to as Being adult with a
    childhood disease)!
  • Should this concern us as child health
    professionals?
  • Does it?
  • If so whats next?

3
What I Want To Do Today…
  • We are in an important time of transition in
    childhood disability thinking
  • I would like to challenge all of us to think
    about where we have been, and where we might
    (should) go in our field
  • To do this I will raise a number of questions
    about what we do, and why, and whether it is time
    to move on…

4
Lets Consider 5 Questions…
  • 1. Where are we coming from in childhood
    disability?
  • 2. Why move beyond a traditional focus on early
    intervention and treating impairments?
  • 3. What guides new thinking for people with
    neurodisabilities their families?

5
  • 4. What questions should we be asking about the
    life-course development of young people with
    neurodisabilities?
  • 5. How can we address the challenges involved in
    moving beyond traditional ways of thinking and
    acting?

6
Then…
  • I will suggest some ideas that I hope you will
    find intriguing, and challenging, and worth
    discussing over the next two days and who
    knows, maybe even longer!

7
Q.1 Where Are We Coming From in Childhood
Disability?
  • Our tradition is early intervention
  • What assumptions have we made?
  • Fix the problems by early treatment
  • But do we?... Whats the evidence?
  • Mustnt miss critical periods
  • But dont we underestimate childrens capacities
    and the power of development?
  • We usually do not know the natural history of
    neurodevelopmental conditions…

8
Q. 2 Why move beyond a focus on early
intervention treating impairments?
  • 1st, because there is more to a childs life
    situation than their impairments
  • 2nd, because our capacity to fix is rather
    limited
  • 3rd, because we lack evidence about connections
    between changes in impairments and changes in
    function
  • 4th, because development is not time-limited

9
Q. 3 What guides new thinking for people with
neurodisabilities their families?
  • The WHOs ICF is an essential tool for the modern
    service provider
  • In the next slide, note how all aspects of the
    person and the condition are inter-connected
    in all directions!
  • Note also the importance of personal factors and
    environment ? more points of entry for things
    we can do.

10
(No Transcript)
11
Q. 3 What guides new thinking for people with
neurodisabilities their families?
  • Family-centred service (FCS) provides a model for
    delivering services
  • Involves listening to, and addressing, parents
    perspectives on their goals
  • Evidence (Ketelaar et al. 2001) shows that we can
    do better, with less therapy, when we address
    childrens and families goals.

12
Q. 3 What guides new thinking for people with
neurodisabilities their families?
  • The recognition of the importance of function
    (e.g., Conductive Education)
  • The use of augmentative and alternative
    interventions to increase peoples performance
    (even if their capacity does not increase)
  • Moving beyond normal as the only guide to
    successful achievement.

13
Q. 4 What questions should we be asking about
the life-course development of young people with
neurodisabilities?
  • When does development start?
  • Isnt CP a developmental disorder?
  • Do we focus on development in our interventions
    with children and families?
  • What does a focus on development mean to our
    treatment philosophies?
  • Do we practice what we preach?

14
Q. 5 How can we address the challenges involved
in moving beyond traditional ways of thinking and
acting?
  • Moving from one way of thinking to another is a
    huge challenge…
  • Can we give up old ideas (those that dont work
    the way we hoped they would) in favour of new
    ideas?
  • Can we start to evaluate new (and old) ideas
    critically, so we will not be in the same place
    20 years from now?

15
Turning to Today and Tomorrow…
  • If we are entering a new era, where are the
    signposts to help us find our way?
  • Are there any data to inform us?
  • What (if anything) will we have to give up and
    will it be worth it?
  • What outcomes will we want to evaluate as markers
    of success in applying new models?

16
Everybody Knows…
  • In thinking about adolescents and adults with CP…
  • …what do they say about this group of people?
    For example
  • They all have pain…
  • They lose function…
  • They are depressed…
  • They have a poor quality of life…
  • They need to continue therapy as adults…
  • How do we know this? Is it true?
  • Are there systematic data?

17
What Lessons are We Learning?
  • What do we hear from adolescents and adults with
    CP about the early days?
  • Therapy was a small and often annoying part of
    their lives!
  • Their goals and ours were often different did
    we know that?
  • They consider us to have a very minimal role in
    their lives!

18
What Lessons are We Learning?
  • What do we hear from adolescents and adults with
    CP about what is important to them now?
  • COPM (144 teens and 59 parents)
  • Adolescents' life issues active leisure,
    mobility (NOT walking!), school, socialization,
    household management, community participation
  • Parents issues mobility, active leisure,
    socialization and school

19
How Do These Findings Fit with Our Traditional
Treatment Goals?
  • To what extent do we
  • Know about youths perspectives?
  • Ask about them?
  • Plan Rx with our children/youth/parents?
  • What are the challenges for us in trying to
    address these real-life goals?
  • Do we worry about giving up some of our long-held
    beliefs about, for example, normal function…?

20
Now Lets Dream a Bit…
  • If I knew then what I know now… What might
    PARENTS want to know, and what might WE do
    differently?
  • Can we shift our perspectives?
  • Can we feed back lessons from the adult world
    to what we do early on
  • How we talk to and counsel parents…
  • How we set goals (with families)…
  • What goals we set…
  • How goals change with development…

21
Now Lets Dream a Bit…
  • How can we facilitate feed forward (into
    transition to adulthood?)
  • We need to help both parents (to let go a bit)
    and young people (to take charge of their own
    lives a bit at a time)
  • This is a gradual process, but needs to be
    started ?by age 8 or 10…
  • Are we ready to trust parents and young people
    to make their own decisions?

22
Now Lets Dream a Bit More…
  • What should our goals in Rx be?
  • What would we consider success in our early and
    on-going interventions?
  • How does family well-being fit as an outcome?
  • Can we start to look at these outcomes?

23
Lets Reconsider 5 Questions…
  • 1. Where are we coming from in childhood
    disability?
  • 2. Why move beyond a traditional focus on
    early intervention and treating impairments?
  • 3. What guides new thinking for people with
    neurodisabilities their families?

24
  • 4. What questions should we be asking about the
    life-course development of young people with
    neurodisabilities?
  • 5. How can we address the challenges involved in
    moving beyond traditional ways of thinking and
    acting?

25
Finally… I believe
  • …that we need to take a life-course approach to
    our work one that promotes being, becoming
    and belonging.
  • …that we need to see the child-in-family, and
    that the well-being of family is essential

26
Finally… I believe
  • …that our traditional focus on impairments is too
    narrow
  • …that promoting development and function should
    be our main goal
  • …that there are huge opportunities to make a
    difference…

27
  • Thank you for listening. Lets all keep talking
    and discussing!
  • www.canchild.ca
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