Kids Brain Health Network (formerly NeuroDevNet) is a Federally funded Network Centre of Excellence (NCE) focused on early diagnosis and treatment for children and families affected by neurodevelopmental conditions such as Autism Spectrum Disorders, Cerebral Palsy and Fetal Alcohol Spectrum Disorders. Knowledge Translation is important for helping to move research based interventions and discoveries into practice and policy, for improving the lives of Canadians. KBHN's KT Core provides a suite of services to assist its researchers and trainees to maximize the impact of their work. One of the tools for maximizing impact is to engage and consult those directly or indirectly affected by the activities' outcomes throughout research and KT processes. During 2016, KBHN has conducted an environmental scan with its stakeholders (parents, clinicians/frontline workers, and policymakers) across Canada in order to learn from their experiences within the 'system' of policies, programs, services and daily living as related to life with a neurodevelopmental condition. Thirty two stakeholders were interviewed one-on-one, for an average of 88 minutes each. Trustworthiness was established through member-validation and triangulation of similar reports. An overarching or 'core' need, 9 themes, and 42 focus areas were identified which will inform future research and KT directions for KBHN. This presentation will describe: 1) the process for conducting this environmental scan, 2) findings and their relevance for improving health and other interrelated systems within Canada, 3) priority setting exercise with stakeholders, and 4) lessons learned.

1. USING STAKEHOLDER CONSULTATION IN THE CONTEXT OF AN
ENVIRONMENTAL SCAN
TO INFORM RESEARCH AND KT PRIORITIES
A n n e l i e s e P o e t z , P h D
K T M a n a g e r , K B H N
M a y 1 6 , 2 0 1 7 - 1 0 : 1 5 – 1 1 : 1 5 a m
W a y p o i n t , B a r r i e , O N
C h u r c h i l l B a l l r o o m

2. OUTLINE
1.What is Kids Brain Health Network?
2.Why we did an environmental scan
3.Process for environmental scan
4.Findings and their relevance
5.Lessons learned
6.Next steps
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3. 1) WHAT IS KIDS BRAIN HEALTH NETWORK?
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5. 2) WHY WE DID AN ENVIRONMENTAL SCAN
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6. K I D S B R A I N H E A L T H N E T W O R K |
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7. 3) PROCESS FOR ENVIRONMENTAL SCAN
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8. OBJECTIVES
1. To explore individual and family experiences of life with CP, FASD
and/or ASD;
2. To investigate the manner in which needs and challenges are addressed
(or not) within the broader system, and potential solution(s);
3. To explore the relationships between professionals, parents and
children affected by CP, FASD and/or ASD.
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9. RESEARCH QUESTIONS
1. What did participants perceive was the role of information and/or knowledge
in contributing towards their experiences with services and/or policies?
2. What did participants perceive were predominant needs and challenges for
individuals and families affected by CP, FASD and/or ASD? What are
potential solutions?
3. How can these needs and challenges inform future research and knowledge
translation activities of Kids Brain Health Network (formerly NeuroDevNet)?
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10. ONLINE SURVEY TO KBHN NETWORK
We began with a survey to KBHN researchers and trainees in search of
stakeholder engagement that had taken place within different projects
(May 10, 2016)
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11. ONE-ON-ONE INTERVIEWS (GROUNDED THEORY)
• REB approval York University
• 32 one-on-one telephone interviews (policymakers, clinicians, parents)
• FASD, CP, ASD
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12. INTERVIEWEES
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13. K I D S B R A I N H E A L T H N E T W O R K |
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14. REPORTS
Sought government-funded reports containing findings that were based on
stakeholder consultations
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15. K I D S B R A I N H E A L T H N E T W O R K |
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16. ANALYSIS
• Interviews recorded and transcribed
• N-Vivo software used for open-coding, thematic analysis
• 9 themes, 44 focus areas
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17. MEMBER VALIDATION AND TRIANGULATION
To establish trustworthiness
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18. K I D S B R A I N H E A L T H N E T W O R K |
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DOT-MOCRACY VOTING ON THE 44 NEEDS

19. K I D S B R A I N H E A L T H N E T W O R K |
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COUNTING THE VOTES

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DISCUSSION & NOTE TAKING IN GROUPS

21. K I D S B R A I N H E A L T H N E T W O R K |
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REPORT BACK ON SMALL GROUP DISCUSSIONS

22. K I D S B R A I N H E A L T H N E T W O R K |
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REPORT BACK ON SMALL GROUP DISCUSSIONS

23. K I D S B R A I N H E A L T H N E T W O R K |
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REPORT BACK ALLOWS INPUT FROM OTHER GROUPS

24. RESULTS OF THE IN-PERSON MEETING
Top 10 priorities
Obtained detail for each priority on:
1) How can we begin to address this priority in an effective manner?
a) what should we be trying to accomplish?
b) if we do that, what would be the desired outcomes?
2) What would be some barriers and enablers of the approach above?
3) Who should be consulted/involved in the process?
4) As we go through this process, how can we engage these stakeholders
(that you have identified above in #3)?
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25. RESULTS OF THE IN-PERSON MEETING
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26. 4) FINDINGS AND THEIR RELEVANCE
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27. RESULTS FROM INTERVIEWS: 9 THEMES
1. Diagnosis
2. Treatment
3. Services
4. Education
5. Healthcare
6. Mental Health/Quality of Life
7. Life Course Perspective
8. Culture and Context
9. Broader System and Society
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28. TOP 3 STAKEHOLDER NEEDS
Theme Focu
s
Area
Needs as expressed by stakeholders interviewed # votes Jan
18, 2017
2. Treatment 8 Need access to a menu of evidence-based treatment options with
information about what each of them does, and need fluidity of the
system(s) that delivers these treatments so that access to
families/individuals is available when needed for as long as it is
needed. Need information on what evidence-based treatment is,
and what is gold standard. Parents need help figuring out what’s
important to prioritize, can’t do everything.
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4. Education 19 Need for (more) professionals working within the school system
(e.g. nurses, educational assistants, those delivering interventions
such as physical therapy, ABA, etc.) with appropriate training to
work with children with neurodevelopmental conditions.
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9. Broader
system and
society
44 Need for more equity in funding for different neurodevelopmental
conditions. In some cases, CP supports/services seem to be well-
funded, ASD is also well-funded but FASD remains under-
serviced/under-funded in comparison.
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29. EMPOWERMENT
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30. EMPOWERMENT
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Basic Social Problem:
Quality of Life
Basic Social Process:
managing (life with a)
neurodevelopmental condition
through empowerment

31. RELEVANCE
To KBHN:
- Understanding stakeholder needs = being able to address them =
impact
To stakeholders:
- Giving stakeholders a voice in a way that has never been done before,
could change lives if we can achieve impact
To governments:
- To understand the Canadian landscape in terms of stakeholder needs, to
inform policy and practices
To community and other organizations serving individuals and families:
- To understand the needs of individuals and families to inform program
policy and service delivery
The final report will be shared with:
- KBHN RMC, board, researchers & trainees
- provinces/territories/federal governments
- Public (on website, social media, presentations)
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32. 5) LESSONS LEARNED
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33. GROUNDED THEORY = EFFECTIVE APPROACH
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34. DOING IT YOURSELF = BETTER (IF YOU CAN)
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35. USES BEYOND (Y)OUR OWN ORGANIZATION
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36. CLOSE THE LOOP
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37. 6) NEXT STEPS
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38. K I D S B R A I N H E A L T H N E T W O R K |
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Workshops for policymakers
Ongoing family engagement

39. THANK YOU
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Anneliese Poetz, PhD
Knowledge Translation Manager, KBHN
York University
apoetz@yorku.ca
416.736.2100 x44310
To participate in the prioritization survey: http://bit.ly/PrioritiesSurveyNDD
For these slides &/or the report when it is posted: https://www.slideshare.net/neurodev