child & youth mental health day research forum
TRANSCRIPT
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Making Mental Health Research Work
for Children , Youth and Families
JANA DAVIDSON MD, FRCP (C)
KELI ANDERSON
STANLEY KUTCHER MD, FRCPC
CAROLYN OLIVER MSW
May 7th2010
Child & youthMental health day
ReseaRCh FoRuM
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setting a new CouRse
this RepoRt is dediCated to the MeMoRy
oF JaCkie FaRquhaR in honouR oF
heR passion and dediCation to Child
& youth Men tal hea lth. JaCki e was a
tiRele ss advoCate FoR Child & youth
Mental health and woRke d FoR the
vanCouveR sChool BoaRd.
F r M 7 , rr r r b:
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Mental health is increasingly recognized as a critical component of population health. Diagnosable psychiatric
disorders affect about 15% of Canadian children and youth (1Waddell and Shepherd, 2002). This amounts to 2
million children or youth, or 4-5 students in every classroom of thirty students across the country. About 70% of
adults living with mental health challenges developed diagnosable symptoms during childhood or adolescence
(2NCYMHD, 2010). There is no bigger health issue affecting children and youth in Canada today, yet limited
awareness of the problem, inadequate mental health services, and a lack of research providing insights and
solutions continue to be signicant challenges.
Given the magnitude of this problem and the low level of funding currently available to address it, it is clear that
nationally, more funding is needed for child and youth mental health care and research. Overall, health research
funding in Canada falls far short of investment in comparable countries, and the proportion of this funding that
goes to child and youth mental health signicantly under-represents the prevalence and impact of mental illness
in this country. More investment is needed in research at the front-end to ensure care is evidence-based and
effective/cost-effective in addressing needs. Research can also contribute to improving the mental health of
populations when it addresses questions such as What makes people mentally healthy? What keeps people
mentally healthy? and What is the most cost effective way to operationalise the answers to the rst two questions?
The experiences and needs of end users (children, youth and families living with mental health disorders)
present, when included, a signicant opportunity to increase the relevance of mental health research. Childrenand youth with mental disorders and their families know from experience some of the questions that need to
be answered by research and the services that require improvement. They understand where creative and effective
solutions may be most needed. Research established in partnership with children, youth and families rather than
solely driven by researchers may provide a more immediate opportunity to make a real and signicant difference
to the lives of those with lived experience. Yet despite the importance of the knowledge held by these key
stakeholders, few systematic opportunities have been made available to date for young people and their families
to collaborate with researchers as active partners in the development of research priorities and the application
of research initiatives. The role of children, youth and families has been largely limited to that of research
participants and recipients of ndings.
Unfortunately, the fragmentation of user groups has contributed to an absence of a national voice to inform a
relevant research agenda and to identify the gaps in knowledge mobilization and service delivery. Changes to
the current relationship between researchers and children/youth/parents may offer an opportunity to advance
the research agenda in a manner that can meet multiple needs simultaneously.
1 Waddell, C. & Shepherd, C, (2002). Prevalence of mental disorders in children and youth: A research update. Mental Health Evaluation andCommunity Consultation Unit, Department of Psychiatry, Faculty of Medicine, The University of British Columbia
2 Retrieved from http://ncymhd.com
irc
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In 2000 the F.O.R.C.E. Society for Kids Mental Health was established in British Columbia by two moms, one
who lost a son to suicide, and another who was determined not to allow the same fate for her son. For 10 years
the F.O.R.C.E. has provided peer support, system navigation and advocacy for parents, families and caregivers
who have children and youth with mental health challenges. The F.O.R.C.E. lobbied for British Columbia to
become the rst province in Canada to establish, fund and implement a child and youth mental health plan
and to declare May 7th as Child and Youth Mental Health Day. The F.O.R.C.E. is leading the National Working
Group to establish National Child and Youth Mental Health Day.
In 2008, a chance meeting between one of the F.O.R.C.E. moms and the deputy editor of Todays Parent, in a
New York coffee shop, led to the development of a new and exciting partnership. Todays Parent, founded in
1984, is Canadas leading parent magazine, The F.O.R.C.E.. Todays Parent magazine and the Mental Health
Commission of Canadas Child & Youth Mental Health Framework Project, the Evergreen, combined efforts to
commission a national parent survey on child and youth mental health. The 2009 survey produced compelling
and informative results. Among the 4500 respondents, one quarter were unaware of mental health treatment
options to address the needs of young people with mental disorders and half were unaware of the existence of
family and peer support services for children and youth with mental illness. Parents indicated a need for improved
access to services, better coordination across services and an increased role for the education system in the
provision of mental health care. Importantly, more than half of the parents surveyed indicated that child and
youth mental health is an issue they think about occasionally or often. (3Anderson, Kutcher & Connell, 2010).
While the Todays Parent survey was being developed, Keli Anderson, Founder and Executive Director of The
F.O.R.C.E. and Dr. Stan Kutcher, the Sun Life Financial Chair in Adolescent Mental Health and Director of the
World Health Organization Collaborating Centre in Mental Health at Dalhousie University identied a shared
concern regarding the absence of dialogue between youth, families, and researchers related to child and youth
mental health research. They agreed that a more collaborative process was necessary and together with
representation from BC Mental Health and Addiction Services coordinated the Child and Youth Mental Health
Day Research Forum held on May 7, 2010 in Vancouver, BC. The Forum brought together mental health
researchers, service providers, and youth and families with lived experience. The Forum was designed to facilitate
dialogue and build relationships among key stakeholders with the ultimate goal of inuencing mental health
research in Canada so that it better meets the needs of children, youth and families.
3 Anderson, K., Kutcher, S. & Connell, C. (2010). Before and after conceptionengaging parents of today and parents of tomorrow. Journal ofthe Canadian Academy of Child and Adolescent Psychiatry, 19, 3, pp197-200
R t wr - Creating a National Voice
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The May 7th, 2010 Forum was hosted by The F.O.R.C.E. Society for Kids Mental Healthat the University of British Columbia Longhouse and was attended by 68 youth, family
members, researchers, service providers and policy makers.
Goals of the Forum included:
1) Establishing collaboration and facilitate dialogue between youth, families, researchers
and service providers
2) Identifying meaningful user-dened research directions that could be used to
inform policy development, and priority setting by research and funding bodies
3) Developing strategies that engage children, youth and families as research partners.
4) Promoting local, regional, provincial and national awareness of Child & Youth
Mental Health Day.
5) Launching the National Institute of Families as a method to develop and sustain
collaborative action
Attendees reected the diverse nature of stakeholders in child and youth mental
health, including nearly equal representation from youth, parents, researchers and
service providers from across Canada. Youth representation included students with
lived experience of mental illness and leadership experience in peer support and
advocacy from Simon Fraser University and Dalhousie University and from the Youth
Advisory Committee for the Mental Health Commission of Canada. Family participantsincluded parents, grandparents and caregivers from 4 of the 5 regions of the province
of British Columbia.
Child & youthMental health dayReseaRCh FoRuM
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Professional attendees represented a range of child and youth mental health practitioners,
including research, advocacy, training, and policy and health service innovation.
Speakers included Dr. Stan Kutcher and Dr. Jana Davidson (Medical Director and
Head of Child & Adolescent Psychiatry, UBC & Childrens & Womens Health Centre
of BC). Representatives of government included Mary Polak, Honourable Minister
for Children and Family Development, British Columbia and Sandy Wiens, Director
of Child and Youth Mental Health Policy British Columbia. Together, Mary Polak and
Sandy Wiens presented the provincial governments (British Columbia) commitment
to explore new approaches to collaboration, shifting from a problem-based model of
mental health care to a positive, resiliency based model featuring the active participationof youth and families. Caroline Connell, Todays Parent Editor-in-Chief discussed the
role of the magazine in supporting the mental health of Canadian children, youth
and families.
Of the invited researchers, over 20 from across Canada who were unable to attend in
person provided written submissions on their identied research priorities within
child and youth mental health. This information was shared with attendees and helped
inform the days discussions.
The 2010 Child and Youth Mental Health Day Research Forum constituted the rst ever
engagement event of its kind in Canada. The Forum generated rich discussion, innovative
dialogue on partnerships, and a commitment to future collaboration. The emergenttheme of the day was the critical importance of including the voices of children, youth
and families with lived experience of mental illness in determining research priorities,
directions, and funding. Researchers in attendance were excited about the prospects
of advancing child, youth and family mental health research through ongoing collaborative
dialogue with those who their research is intended to benet.
It was really great
to see the input o
youth sought and
listened to in
terms o research
y prc
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The days dialogue produced a wealth of new ideas about possible mutually created
research goals and meaningful research outcomes. The opportunity for face-to-face
knowledge exchange contributed signicantly to the development of collaborative,practical, Family Smart research themes. Additional perspectives from researchers
who were not able to be present were reviewed and discussed by attendees.
The following themes were generated for consideration in setting priorities and goals
for child and youth mental health research:
1) Society is free from the stigma of mental illness
2) The entire population is properly knowledgeable about mental health and
mental illness
3) Mental health is understood to be a lifespan issue and a whole family issue
4) Mental health and physical health are understood as equally important and
complementary elements in a holistic system of medical care
5) Mental health care is based on need, related to diagnosis and impact on functioning
6) Integrated systems of care are designed to meet the needs of, and are determined
in partnership with children, youth and families
7) Mental health policies incorporate effective strategies for mental health promotion
and the prevention of mental health disorders
8) Pathways to effective, appropriate care are transparent, available, accessible and
understood by all9) Individual and family needs are respected and met at the point of care
10) Mental health policies and programs are evidence-based, evidence-driven and
meaningful to children, youth and families
11) Treatments are effective, and risks are well understood and mitigated
This is one o
the frst times
I was asked
what was
meaningul to
me as a parent
t R
a) eb M prr, g ocm
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12) There is an improved understanding of the causes of mental health and mental
illness, particularly in the eld of neuroscience including the development of the
brain and the complex genetic and environmental inuences across the life span.
13) The knowledge exchange needs of children, youth and their families are understood,
respected and responded to in the provision of care
14) The most effective means of providing best available evidence in a format that
appreciates the needs of all knowledge users is known and applied.
Much can be learned from the research themes identied by Forum participants. One
key priority identied by the group focused on the importance of increased research
on the reduction and elimination of stigma. Another key priority identied by participants
was strategies for creating meaningful partnerships with children, youth and families.
The critical importance of peer and early interventions, with an emphasis on research
projects associated with the integration of schools into the system of mental health care
was featured, along with research supporting family resilience and efforts to learn directlyfrom affected children, youth, parents and caregivers. Forum participants also generated
specic, concrete questions for researchers to consider in their work.
By far the greatest research need identied by Forum participants was related to the
identication and application of most effective interventions for changing social
attitudes, mobilizing knowledge and transforming the mental health system to one
based on child, youth and family focused, evidence based care. A key theme of the
day was the need to develop effective knowledge mobilisation strategies to eliminate
stigma and educate mental healthcare practitioners about the lived experience of
children, youth and families with mental health challenges While research into the
causes and treatment of mental illness was identied as important, it was consideredsecondary to the facilitation of new attitudes and enhanced models of care, ensuring
that what was available was universally based on the best evidence already available.
When provided an opportunity for direct dialogue, youth, families and researchers
generated research priorities that reected the social impact of mental illness and the
need for ongoing knowledge exchange initiatives.
The May 7th
event allowed me
to have the right
conversation, but
with a new lens,
thanks to the
parents and
youth present
Rrcr
B) eb Rrc prr
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Based on a summary of deliberations at the Forum, the following eleven key research
questions and related ideas for mental health research are summarized below.
1) How do we eliminate the stigma of mental illness?
Messages and communication strategies to change public perception of
mental health
Measuring change in social attitudes towards mental health
The potential for new media and technology to communicate de-stigmatising
information
Reducing the impact of stigma on children, youth, siblings, parents and caregivers
2) How do we maximise the participation of children, youth and family in all aspects
of the mental health system, from service design to delivery and evaluation?
Strategies to create partnerships with parents, caregivers
The effect of family engagement on outcomes
Youth engagement and empowerment strategies
Child engagement and empowerment strategies
The best models that can be applied to assist families in accessing necessary
services for their child or youth and other members of their family
3) What works?
Effectiveness or lack of effectiveness of non-pharmacological approaches
(e.g. alternative therapies and medicinal marijuana)
Lifestyle factors such as nutrition, recreation, sleep on measurable outcomes
in mental health promotion, prevention and treatment
Evaluation of peer interventions
Best practices and long term outcomes of early intervention strategies
Strategies to build resiliency of demonstrated effectiveness and the prevention
of second generation mental illness
Effectiveness of different service delivery mechanisms (e.g. home-based and
school-based care, care team meetings, E.R. intervention) on treatment outcomes
Key mechanisms in, and optimal age for, successful interventions
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Increasing the number of appropriately demonstrated effective interventions in
key domains of need, for example in children with anxiety disorders, cognitive
impairment and concurrent substance abuse
The impact on children and youth of new medications and medications approved
for adults
Increased effectiveness research, such as evaluating the effectiveness of evidence-
based treatments like Dialectical Behavioural Therapywhen implemented under
real world conditions
4) What is the best way to engage the education system in addressing child and youth
mental health?
What is the best way of improving the current level of mental health literacy
in schools?
How to best address systemic barriers to supporting children with mental health
problems in school
Systematic and critical evaluation of the effectiveness, cost-effectiveness and safety
of school-based mental health promotion and prevention programs
The outcomes of mental health education for teachers
Effective strategies to support children with mental health problems to succeed
in school
Effective strategies to bridge homes and schools
5) How do we build a model of care that meets child, youth and family needs over
the lifespan?
Gaps in current services provision and policy
Systemic barriers to service (e.g. age dened services and programs)
Strategies for implementing fundamental system change The optimal model of whole family centered practices that strengthens all
members in families
The creation of child, youth and family-friendly service environments
The impact of focusing on wellness rather than illness
Comparing care pathways for chronic mental and physical health conditions
Housing needs of mentally ill youth
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Evaluation and outcomes from providing respite to parents and caregivers
Models that support youth transitioning into adult services
6) How do we improve the core competencies & mental health knowledge of those
who support our children and youth?
Implementation of evidence based practice
Training for health care and child and youth care workers
Enhancing mental health competencies in usual health care settings
Parent and community education
The intersection of mental health promotion and drug and alcohol awareness
Education to promote resiliency of demonstrated impact of mental health outcomes
7) How can we recognise and diagnose mental illness earlier?
Early indicators of mental health challenges in infants, children and parents
Describing childhood manifestations of symptoms (e.g. the difference between
imagination and delusion in a child, how symptoms differ for children with
cognitive impairments)
Improving diagnostic tests and interdisciplinary screening and assessment tools
The contribution of brain imaging, biological markers, and genetic and family
history to diagnosis
Best evidence based practices in assessment
Indicators of mental wellbeing
8) How do we achieve effective interprofessional collaboration?
Effective multi-disciplinary service models
Current barriers to multi-disciplinary collaboration
Training models to create cross-sector understanding of mental illness and wellness
Outcomes of interprofessional collaborative care
9) What are the causes of mental illness?
Risk factors for mental illness and the probability of second generation
mental illness
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The intersection of mental illness and drug and alcohol use
Societal and family contributors to mental illness
Epigenetic research
The long term impact of mental disorders and treatments on developing brains
10) What do families need?
Understanding on the impact of mental illness on all family members
Information and support to meet the needs of broader family
Best practice tools and strategies for parenting a child or youth with mental
health challenges
Support to prevent caregiver burnout
Support for families to navigate the system
Resilience and relationship promotion
11) What is it like to live with mental illness?
Child and youth perceptions of what has helped and hindered their mental health
Parent/Caregiver perceptions of what has helped and hindered their role of
parenting a child or youth with mental health challenges
Lessons to be learned from resilient children with mental health problems
Phenomenology of disorders, interventions and outcomes
Parent/Caregivers perception of risk associated with help seeking for their own
mental health challenges
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The Child and Youth Mental Health Day Research Forum held on May 7th, 2010
demonstrated the richness of dialogue generated by bringing together youth, families,
caregivers, researchers, health care providers and policy makers. While the research
domains described above are not complete nor set in stone, they do provide a rst step
in the journey of collaborative research directions that can be further developed between
researchers and youth/parents. Next steps will include sharing these results with key
stakeholders and building a sustainable forum for meaningful, ongoing discussion and
which includes the perspectives of children, youth and families in the development of
research priorities. Emphasis will be placed on the work of researchers and funding
agencies that support research initiatives in child and youth mental health.
The Institute of Families for Child & Youth Mental Health, launched at the Forum,
will provide a coordinating role for this process. This will include but not be limited
to the coordination of partnerships between youth and families with lived experience
of mental illness and researchers, policy makers, health providers and educators across
Canada. The Institute will undertake to play a facilitator role for the meaningful and
formal engagement of families in the improvement of mental health care systemsacross Canada. Chaired by Dr. Jana Davidson and Ms. Keli Anderson, the Institute
planning committee includes representatives from the Child Welfare League of Canada,
Mental Health Commission of Canada, National Infant Child and Youth Mental Health
Consortium, Canadian Association of Paediatric Health Centres, Canadian Paediatric
Society, Parents for Childrens Mental Health, Students for Mental Wellness, Youth
Net, Todays Parent and other leading champions in child and youth mental health.
The Institute will develop and sustain the partnerships established both prior to and
during the Child and Youth Mental Health Day Research Forum.
The Institute of Families will facilitate the national dissemination of the results of this
Forum and work to further engage researchers with children, youth and families in
order to create the richness that this union can bring. The Institute will maintain a
database of youth and families members wishing to participate in research and will
work collaboratively with key partners to develop research projects based on the
priorities identied by the Forum and further rened in discussions with the research
community. The Institute has secured the Family Smart trademark to to identify
research, programs, policies, practices and services that are Family Smart based on
criteria determined by children, youth and families. The Institute will establish a
Parent Leadership University and a library hub to support knowledge exchange
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including the dissemination of information about leading practice, evidence-informed
and Family Smart programs across the continuum of child and youth mental health.
It will partner with other groups and organizations that provide best evidence information
that is useful for end-users and providers alike. The Institute will also assume a leadership
role in providing guidance and consultation about best methods of engaging families
in developing research priorities, goals and outcomes that are meaningful to them,
and to increase the inclusion of family perspectives in research, policies, practices and
service planning.
On May 7th 2010, youth, families, researchers, service providers and policy makers
came together to initiate discussion on a new strategy for mental health research.
Closing the gap between users, researchers, funders, service providers and policy
makers increases the chances of producing research that may more immediately
benet children, youth and families. The Forum produced an initial set of research
domains that can inform future dialogue between researchers, research agencies/funders and children/youth/families. The work of the Forum constituted an
unprecedented step towards bringing children, youth and their families into mental
health research as equal partners in a national context. The Forum also provided an
opportunity to launch a national organization that will pursue the vision of partnership
amongst key stakeholders to support child and youth mental health across Canada.
The next step will be to share the outcome of this consultation with family members,
funding agencies, governments, agencies and other stakeholders across Canada.
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ax: a
Crb m b M 7, 2010:
(, r, crr, rrcr, b, rm)
Keli Anderson
Russell Ball
Gail Bagri
ReneeBoisvert
Emily Borgelt
Dr. Grant Charles
Dr. Nicole ChovilKen Chow
Kim Cobb
Julie Collette
Dr. Connie Coniglio
Caroline Connell
Dr. Jana Davidson
Jennifer Ann de la Torre
Sheena Dhaliwal
Bree Edgar
Jackie Farquhar
Nicole FastBev Gutray
Alethea Hackman
Sarah Hamid-Balma
Brian Hansen
Lisa Hansen
Maggie Joseph
Dr. Anne Junker
Taylor Kagel
Emma Kendall
Dr. Sarosh Khalid-KhanMonica Kriese
Dr. Stan Kutcher
Pam Lansky
Dr. Bonnie Leadbeater
Dr. Rob Lees
Suzanne Lewis
Bronwyn Loucks
Dr. Ian Manion
Mat Marchand
Dr. Darryl Mayberry
Betty McConnellRod McCormack
Dr. Kimberley McEwan
Denise McKibben
Marlisse McRobie
Neil Mercer
Carl Miller
Dr. Marlene Moretti
Christer Myberg
Dr. Mary Nixon
Nancy PereiraJodie Polack
Nancy Reynolds
Ross Robinson
Joe Roback
Gloria Robertson
Mary Robertson
Jeannie Rohr
Elizabeth Saewyc
Gillian Schoenhuffs
Brent Seal
Kathy ShortDee Dee Sung
Dr. Yifeng Wei
Sandy Wiens
Margaret Steele
Abel Ickowicz
Rmi QuirionAlice Charach
Margaret D Weiss
Harriet MacMillan
Daniel Gorman
Melanie Barwick
Elizabeth OsuchCharles E. Cunningham
Patrick.McGrath
Penny Corkum
Sonia Lupien
Leora Pinhas
Peter SzatmariJane Garland
Khaled Khan
Marie-Jose Fleury
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201 - 601 West Broadway
Vancouver BC V5Z 4C2
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