Trusted Sources in Diverse Communities

Posted by Maryanne Blake on July 18th, 2005 Posted in: News From NNLM PNR

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This article was written by Ginger Kwan, Project Coordinator,
“Technology Training for Trusted Sources in Diverse Communities Project”

In 2004 an important project was started in the Seattle/King County area. It was called “Technology Training for Trusted Sources in Diverse Communities”. The aim of the project was to improve the use of the Internet by a group of advocates and outreach workers identified as “Trusted Sources” to access health information and in turn provide culturally and linguistically relevant information for families raising children with developmental disabilities.

The project was made possible through the collaborative efforts of several local agencies. The Associates in Cultural Exchange hosted and led the project. The Trusted Sources are Family Advocates and Outreach Specialists from The Arc of King County, Refugee Women’s Alliance, and Parent to Parent Power. These individuals have experience working with families who have children with disabilities and special health care needs and were bilingual and bicultural. They all provide direct services to families in the following communities: Vietnamese, Korean, Cambodian, Chinese, East African, Spanish speaking and African American. Two librarians, Ellen Howard, Medical Librarian at Harborview Medical Center and Claire Lev, Resource Librarian from the King County Library System planned and conducted the training for the Trusted Sources. Lastly, Children’s Hospital and Regional Medical Center shared their curriculum of “Getting to Know the Internet”. The project was funded by an outreach award from the National Network of Libraries of Medicine Pacific Northwest Region (NN/LM PNR).

During the project the Trusted Sources learned Internet and medical library health information resources and were better able to assist families. The following story is an example of the impact of the project on a family. This example highlights how a Cambodian family benefited from the health information provided by their Family Advocate (trained Trusted Source) from Refugee Women’s Alliance.

The family is composed of a 23-year-old mother, her 8-year-old son, 3-year-old daughter, and a grandmother. The mother has good English skills, but the grandmother who is the main caretaker of the children knows little or no English.

The family was referred to the Trusted Source by a public health nurse who was concerned about the little girl’s development and the family’s lack of follow-up and seeming disinterest in her. The Trusted Source also found that the family showed no interest in any treatment or care for the child and had a fatalistic attitude about the potential of the little girl. The mother and grandmother focused on the older child as he was developing well and without any problems. Even with a good relationship, the common language and a cultural understanding of the family’s attitude, the Trusted Source found that she was not able to motivate the family to take an interest in the little girl or to seek any medical or therapeutic care for her.

However, things began to change very rapidly when the Trusted Source returned from the first major project training session on Internet resources – how to find and use websites and other available Internet resources for health information. In the session that day the Trusted Sources were introduced to the website MedlinePlus. Besides a thorough introduction to this website all trainees were given a brochure and bookmark about MedlinePlus. When the Trusted Source saw the mother of little girl later that day she told her about the website and gave her the bookmark since the mother seemed interested in checking out the website. The mother had recently enrolled in a training program to become a Pharmacy Aid and had a class assignment to research a question on the web. The mother chose to research cerebral palsy (the diagnosis given to the little girl). In doing that exercise for her class, she became very interested in learning about cerebral palsy and started printing up information to take with her to the next doctor’s appointment for her daughter.

Reading the information on this website, receiving other written information from the doctor, checking other websites and successfully completing her class assignment began to change the understanding and the attitude of the mother. She became much more interested in her daughter and began to talk and play with her. She was able to talk about cerebral palsy with her child’s doctor and the Trusted Source and could follow up with needed therapies. The family, including the grandmother, began to show more interest in the little girl not just in the older boy.

This story was shared and it demonstrated to everyone involved in the project that it takes both the trusting relationship between the advocacy and outreach staff and a family and also training and knowledge to achieve the desired outcomes for children and their families.