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Collaboration to Expand
Accessibility: The Role of
Consumers in Web Content
Development 
Cathryn Chiesa, MLS, NCCTS Duke U...
Presentation Objectives
During this presentation audience participants will…
1) Learn the benefits and challenges of worki...
The National Child Traumatic Stress Network
Our Mission
The Mission of the National Child
Traumatic Stress Network (NCTSN)...
Child and Family Serving Systems
 Public Child Welfare Agency & Foster Care Agencies
 Department of Social Services (Chi...
What is the National Child Traumatic Stress Network?
The NCTSN brings together
expertise to address the
specific needs of ...
Our National Reach
In 2000 the Network
had 17 centers.
Today the Network
has
• 78 Currently
Funded Centers
(not including ...
NCCTS ROLE
 The National Center for Child Traumatic Stress (NCCTS) housed
jointly at UCLA and Duke University works with ...
NCTSN VISION FOR FAMILY AND YOUTH
INVOLVEMENT
 Early in it’s history NCTSN fostered small groups to develop and
review in...
History of Parent, Caregiver, and
Youth Involvement
In October 2005, NCTSN convened the Family and Consumer Engagement
Sum...
History of Parent, Caregiver, and
Youth Involvement
 In 2007, the NCCTS Family Youth Involvement Internal Team
was formed...
NCCTS Consumer Consultant Group
In December 2010 The NCCTS Consumer Consultant Group was
established to:
• To ensure there...
History of the Web Project
 The National Child Traumatic Stress Network provides information on
its website and through i...
History of the Web Project
In March of 2011 the Consultant Group began looking at the
webpages. The group’s goal was to ma...
Consumer Consultant Group Wish List
WISH LIST FOR PARENTS’ AND CAREGIVERS’ PAGES: WHAT WAS DONE
http://www.nctsn.org/conte...
WORK PLAN
• Helped in delegating tasks and predicting timelines
• Although we did not stick to the plan, it helped to get ...
The Long and Winding Road
Between October 2011 and June 2013 we worked at writing new
information, finding engaging pictur...
Consultant Group Feedback
Prior to Developing First Draft
 Content should be welcoming to families and caregivers
 Conte...
Content Development Process
• Used existing products
for language & text
• Consultant feedback
included
• Subject experts ...
Collaborating with
Consultant Group and Editor
How to Tell if Your Child Has CTS
Various Formats Considered
Consumer group was very against the chart
with check marks. W...
How Many Drafts Did it Take to Create
New Web Pages?
How to Access Webpages
http://www.nctsn.org/
Comparative View:
Before and After
New Changes Made to NCTSN.org
Based on Consultant Group Feedback
• Information grouped under 5
tabs
• Treatment section of...
Consumer Group’s Benefit from Participating
NCCTS Family and Youth Consultant Group Survey
For each of the following items...
Benefits and Challenges
Benefits:
• Able to include information
relevant to parents/and
caregivers
• Able to make text bro...
Concluding Remarks
Working with a Consumer Group
Creating and working with the group:
• Create a heterogeneous consumer gr...
Benefits of Working with a Consumer
Consultant Group
 Enhances cultural competence
 Enhances clinical treatment approach...
Future Directions
 Working with the NCTSN Birth Trauma Committee to add
information to the Parent’s/Caregiver’s pages for...
NCCTS CONSUMER CONSULTANT GROUP & NCCTS STAFF
Celebrating launch of revised parents/caregiver’s pages September 2013
For more information on NCTSN resources, or
for up-to-date and scientific information on
child and adolescent trauma, plea...
Learn More about Creating a Partnership with Consumers,
Family Members, and Youth
 Pathways to Partnership: Tips for Deve...
Thank you!
Cathryn Chiesa cathryn.chiesa@duke.edu
Nathalie Reid nreid@mednet.ucla.edu
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Collaboration to Expand Accessibility: The Role of Consumers in Web Content Development 

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Collaboration to Expand Accessibility: The Role of Consumers in Web Content Development 

  1. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 19. Collaborating with Consultant Group and Editor
  20. 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. 21. How Many Drafts Did it Take to Create New Web Pages?
  22. 22. How to Access Webpages http://www.nctsn.org/
  23. 23. Comparative View: Before and After
  24. 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. 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. 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. 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. 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. 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. 30. NCCTS CONSUMER CONSULTANT GROUP & NCCTS STAFF Celebrating launch of revised parents/caregiver’s pages September 2013
  31. 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. 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. 33. Thank you! Cathryn Chiesa cathryn.chiesa@duke.edu Nathalie Reid nreid@mednet.ucla.edu

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