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

Collaboration to Expand Accessibil ity: The Role of

Consumers in Web Content Development 

Cathryn Chiesa, MLS, NCCTS Duke UniversityResource Librarian

Nathalie Reid, MLIS, MA, NCCTS UCLAInformation and Resource Manager

David Knox, DCNCCTS Consumer Consultant Group

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

The National Child Traumatic Stress NetworkOur 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.

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

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 AbuseDomestic Violence Community ViolenceNatural Disasters & TerrorismAccidents/Violent Death of a Loved OneRefugee & War Experiences Life Threatening Injury & IllnessChild Service Systems

Child Traumatic

Stress

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

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.

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”.

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/Pathways_ver_finished.pdf

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.

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.

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.

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.

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

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.

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……

Consultant Group FeedbackPrior 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

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

Collaborating with Consultant Group and Editor

How to Tell if Your Child Has CTSVarious 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.

How Many Drafts Did it Take to CreateNew 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 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

Consumer Group’s Benefit from ParticipatingNCCTS 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.

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

Concluding RemarksWorking 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

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

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.

NCCTS CONSUMER CONSULTANT GROUP & NCCTS STAFFCelebrating 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, please visit:

www.NCTSN.org

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.pdf

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.pdf

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_CompensationTipsheet.pdf

Partnering with Youth and Families in a Trauma Setting Speaker Series

http://learn.nctsn.org/course/view.php?id=40

Thank you!

Cathryn Chiesa [email protected] Nathalie Reid [email protected]