Parents and professionals: we are in the same boat, but can we row in the same direction? Suggestions for improving shared decision-making about therapies.

Author
Chatelin Alain
Institution
Fondation Paralysie Cérébrale
Abstract

Objectives
To improve collaborative decision-making between clinicians and parents through:
1. A positive framework of thinking, based on WHO's ICF
2. Understanding and interpreting information and evidence for therapies and interventions
3. Focusing on goal-setting by families and professionals

Summary
In a life-long condition like CP, parents may struggle in their quest for therapies. They seek
help to appraise information. Finding and understanding 'evidence' and appraising quality
are essential skills for parents and professionals. Understanding how research is generated
and how to manage prevailing uncertainty when assessing therapies when evidence is
lacking is also critical.

WHOs ICF emphasises function as evidence of health and promotes 'participation'. It
provides a positive framework to inform 'family-centred' service based on partnership and
cooperation between families and professionals. Listening to parents and their child with CP
will enable everyone to formulate goals and approaches that fit parents' understanding of
their child, their values, their resources and their childs expectations.

Symposium outline
Four themes will be addressed through presentations and discussion with the audience:
1. How are we thinking about 'childhood disability' in the 21st century, and what has
changed?
2. Professionals and parents working collaboratively, in partnership: goal setting as a tool to
get a family-centred system moving
3. What questions are families asking about therapies/interventions and how do we assess
what 'works'. Evidence-informed decision-making as a means to reach the childs goals.
4. How can we pull all these ideas together? Relevance to the particular and change
measurement."

 

Attached file
Ref. N.
MS8388