1. Collaboration to Expand
Accessibility: The Role of
Consumers in Web Content
Development
Cathryn Chiesa, MLS, NCCTS Duke University
Resource Librarian
Nathalie Reid, MLIS, MA, NCCTS UCLA
Information and Resource Manager
David Knox, DC
NCCTS Consumer Consultant Group

2. Presentation Objectives
During this presentation audience participants will…
1) Learn the benefits and challenges of working with various
stakeholders including parents, caregivers, and youth on web
projects
2) Understand how input from a consumer consultant group
improves content, design, and overall user experience
3) Explore how their own future projects can be developed to
include the participation and voice of consumers
4) Encourage others to utilize consumers in the development of
(web) projects

3. The National Child Traumatic Stress Network
Our Mission
The Mission of the National Child
Traumatic Stress Network (NCTSN) is to
raise the standard of care and improve
access to services for traumatized
children, their families and communities
throughout the United States.

4. Child and Family Serving Systems
 Public Child Welfare Agency & Foster Care Agencies
 Department of Social Services (Child and Family Services)
 Public and Private Mental Health Agencies
 Non-Profit Social Service Agencies
 Specialty Programs (i.e., Substance Abuse and Domestic Violence)
 Juvenile Delinquency and Family Courts
 Juvenile Justice Residential/Correctional Facilities
 Law Enforcement
 Attorneys and Advocates
 Child Advocacy Centers
 Schools
 Public Health Department
 Tribal, Community, and Faith-Based Organizations
 Military

5. What is the National Child Traumatic Stress Network?
The NCTSN brings together
expertise to address the
specific needs of all ages of
children (preschool and school
age children and adolescents)
who are exposed to a wide
range of trauma, including:
Physical Abuse Sexual AbuDomestic Violence CoNatural Disasters & TerrorismAccidents/Violent Death of a Loved OneRefugee & War Experiences Life Threatening Injury & IllnessChild Service Systems
Child
Traumatic
Stress

6. Our National Reach
In 2000 the Network
had 17 centers.
Today the Network
has
• 78 Currently
Funded Centers
(not including NCCTS)
• 45 Affiliate
Organizations
• 67 Individual
Affiliates

7. NCCTS ROLE
 The National Center for Child Traumatic Stress (NCCTS) housed
jointly at UCLA and Duke University works with the Substance
Abuse and Mental Health Services Administration to develop
and maintain the NCTSN structure, provide technical assistance
to grantees within NCTSN, oversee resource development and
dissemination, and coordinate national education and training
efforts.
 NCCTS staff worked with the NCCTS Consumer Consultant
Group, editors, and NCTSN members in the redesign of the
family and caregiver’s web pages.

8. NCTSN VISION FOR FAMILY AND YOUTH
INVOLVEMENT
 Early in it’s history NCTSN fostered small groups to develop and
review information and materials for youth and families
 NCTSN vision was “to build a partnership among youth,
families, caregivers, and professionals based on mutual
respect, a common commitment to healing and shared
responsibilities for planning, selecting, participating in and
evaluating trauma services and supporters”.

9. History of Parent, Caregiver, and
Youth Involvement
In October 2005, NCTSN convened the Family and Consumer Engagement
Summit in Arlington, VA. The purpose of summit was to bring diverse
youth and family participants together with NCTSN members to develop a
guiding framework, vision, and goals for involving youth and families at all
levels of NCTSN activity. The result of the meeting was a this resource:
This product provides a structure for examining and
expanding the role of youth and families in
organizations on both the clinical and
organizational levels.
http://www.nctsn.org/sites/default/files/assets/pdfs/Pat
hways_ver_finished.pdf

10. History of Parent, Caregiver, and
Youth Involvement
 In 2007, the NCCTS Family Youth Involvement Internal Team
was formed. The team represented personnel from product
development, website, liaisons, training and NCCTS leadership.
 Team met monthly to discuss ways to move forward with
working with families and youth.
 In 2010, the NCCTS Family team began the process of hiring a
consumer consultant. After careful review of the process the
team moved from hiring one consultant to developing a family
and consumer consultant group.

11. NCCTS Consumer Consultant Group
In December 2010 The NCCTS Consumer Consultant Group was
established to:
• To ensure there is a consumer and family voice across all National Center
activities
• To raise awareness and educate others regarding trauma and its effects
• To provide NCCTS with feedback and ides on product literature and website
content
• To develop ideas of how NCCTS can better reach a family and youth
audience
Initially only one member per family was in the group. It then
became apparent having both partners in the group would provide
a unique perspective from each partner.

12. History of the Web Project
 The National Child Traumatic Stress Network provides information on
its website and through its publications as a public service. The
primary audience are those who provide services to children and
families. In the beginning, a single page of information designed for
parents/caregivers was available.

13. History of the Web Project
In March of 2011 the Consultant Group began looking at the
webpages. The group’s goal was to make the webpages more user
friendly and to provide more information about treatment,
resiliency, and hope.
In June 2011, Nathalie Reid made a visit to NCCTS-Duke. During
the visit ,she spoke with Judy Holland, the lead staff for the NCCTS
Family Youth Involvement Internal Team. Judy expressed great
interest in making the web project a priority. Nathalie agreed and
the work began.
July-August 2011 NCCTS staff began discussion about the best
way to go about revising the pages.

14. Consumer Consultant Group Wish List
WISH LIST FOR PARENTS’ AND CAREGIVERS’ PAGES: WHAT WAS DONE
http://www.nctsn.org/content/resources-parents-and-caregivers
What we were able to do from you wish list:
Spell out CTS
Is this spelled out adequately on the first page uder What is Child Traumatic Stress? In the
Understanding CTS tab, if possible should CTS be spelled out?
Add pictures:
This has been accomplished. Today you will see the pictures we have chosen to add. Let us know if you
would like to see different pictures. We included the various populations and parenting styles you
suggested at the last meeting.
Would you like to see pictures on the Understanding CTS and Trauma Treatment pages?
A picture link to the new pages will be added as part of the flash pictures currently available on the
home page. Will be like the current picture linking to Spanish resources.
Tabs at the top of the pages:
Welcome
Understanding CTS
Trauma Treatment
Resources
Are these tabs appropriately labeled?
• In September 2011, staff met
with NCCTS Consumer
Consultant Group
• Wish list was produced
• Short and long terms goals were
set
• Importance of Consumer
Consultant group feedback early
on was prioritized and relayed to
the group
• We promised to explain why or
why not items on the wish list
were completed

15. WORK PLAN
• Helped in delegating tasks and predicting timelines
• Although we did not stick to the plan, it helped to get the process
started and provided direction.

16. The Long and Winding Road
Between October 2011 and June 2013 we worked at writing new
information, finding engaging pictures, finding quotes, and making
the reading level appropriate. Many drafts were created……

17. Consultant Group Feedback
Prior to Developing First Draft
 Content should be welcoming to families and caregivers
 Content should include minimal professional jargon or
terminology
 Design of content needs to be easy to read, not text dense
 Images of diverse families are important
 Voices of parents and caregivers should be present throughout
 Message of hope and resiliency must be present

18. Content Development Process
• Used existing products
for language & text
• Consultant feedback
included
• Subject experts weighed
in on the proposed
content
• Made pages welcoming
• Easy to read content was
a priority

19. Collaborating with
Consultant Group and Editor

20. How to Tell if Your Child Has CTS
Various Formats Considered
Consumer group was very against the chart
with check marks. We followed their
suggestion.
This is the list of symptoms
as recommended by the
group. There is a box for
three different age groups,
no checkmarks.

21. How Many Drafts Did it Take to Create
New Web Pages?

22. How to Access Webpages
http://www.nctsn.org/

23. Comparative View:
Before and After

24. New Changes Made to NCTSN.org
Based on Consultant Group Feedback
• Information grouped under 5
tabs
• Treatment section offers hope for
recovery
• Resource section expanded
• Voices of parents and caregivers
were included and highly visible
on the web pages
• Images of diverse families, in a
variety of forms are represented
• Content was placed in bulleted
form when possible

25. Consumer Group’s Benefit from Participating
NCCTS Family and Youth Consultant Group Survey
For each of the following items, please indicate whether or not you have
personally received the benefit as a result of participation in this
consultant group.

26. Benefits and Challenges
Benefits:
• Able to include information
relevant to parents/and
caregivers
• Able to make text broadly
accessible 8th grade
reading level
• Many eyes made the pages
suitable for the audience
• End result was welcoming
and easy to read pages
Challenges:
• Restraints of website
platform
• Time constraints
• Geographic distance
• Numerous groups involved
• Sharing multiple revised
formats
• Competing priorities

27. Concluding Remarks
Working with a Consumer Group
Creating and working with the group:
• Create a heterogeneous consumer group
• Lay a groundwork of trust and respect
• Include youth who are 18 or older
• Consider participants overall health and readiness, including where
they are in the treatment process
• Listen to their suggestions
• Follow-up and let the group know why or why not their suggestions
were used
• Acknowledge their contributions at the end of their service
• Be available to talk with them other than just at meetings
• Share the final product

28. Benefits of Working with a Consumer
Consultant Group
 Enhances cultural competence
 Enhances clinical treatment approaches
 Enhances suitability of print products
 Increases public awareness
 Provides more effective outreach to other families
 Improves access to services
 Improves organizational management and leadership
 Influences changes in policies, training, and consumer
education materials

29. Future Directions
 Working with the NCTSN Birth Trauma Committee to add
information to the Parent’s/Caregiver’s pages for birth parents
who have lost custody. Decided to launch before that
information was added,
 In the beginning stages of planning to create web pages
designed for youth.

30. NCCTS CONSUMER CONSULTANT GROUP & NCCTS STAFF
Celebrating launch of revised parents/caregiver’s pages September 2013

31. For more information on NCTSN resources, or
for up-to-date and scientific information on
child and adolescent trauma, please visit:
www.NCTSN.org

32. Learn More about Creating a Partnership with Consumers,
Family Members, and Youth
 Pathways to Partnership: Tips for Developing an Effective Advisory Board
(2009)
http://www.nctsn.org/sites/default/files/assets/pdfs/Pathways_AdvisoryBdTipsheet.
 Pathways to Partnership: Tips for Incorporating Peer-to-Peer Support Into Your
Program (2009)
http://www.nctsn.org/sites/default/files/assets/pdfs/Pathways_PeertoPeerTipsheet
 Pathways to Partnership: Frequently Asked Questions on Compensation for
Family, Youth, and Consumer Involvement (2009)
 http://www.nctsn.org/sites/default/files/assets/pdfs/Pathways_CompensationTipsh
 Partnering with Youth and Families in a Trauma Setting Speaker Series
http://learn.nctsn.org/course/view.php?id=40

33. Thank you!
Cathryn Chiesa cathryn.chiesa@duke.edu
Nathalie Reid nreid@mednet.ucla.edu