Child & Youth Mental Health Day Research Forum

8/4/2019 Child & Youth Mental Health Day Research Forum

1/19

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


2/19

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:


3/19

1 Child & Youth Mental Health Day Research Forum

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


4/19


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


5/19


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


6/19


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


7/19


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


8/19


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


9/19


Rrc dm if b Frm prc

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


10/19


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


11/19


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


12/19


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


13/19


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

C) o prr:

t n i Fm r C y M h


14/19


smmr

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.


15/19


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

Crb m b rrcr bm

r rr M 7 :


16/19


ax: B1


17/19


ax: B2


18/19


ax: B3


19/19

i Fm

201 - 601 West Broadway

Vancouver BC V5Z 4C2

Canada

t

604 831 1958

em

[email protected]

.m.cm

Child & Youth Mental Health Day Research Forum

Documents

Transcript of Child & Youth Mental Health Day Research Forum