Reaching Out to Underserved Parents on the Internet Lisa Bain, M.A. Annie Steinberg, M.D. Yuelin Li, Ph.D. Olivia Thetgyi The Deafness & Family Communication Center The Childrens Hospital of Philadelphia Supported by: National Institute on Deafness and Other Communication Disorders

Who are the underserved? Parents in inner cities Parents in inner cities Parents in rural areas Parents in rural areas Parents with low literacy Parents with low literacy Hispanic parents Hispanic parents

Literacy in the United States Almost half of all adults in the U.S. have low or very low reading skills Almost half of all adults in the U.S. have low or very low reading skills That means they have trouble reading and understanding instructions on medicine bottles That means they have trouble reading and understanding instructions on medicine bottles Almost one quarter of adults in the U.S. are functionally illiterate Almost one quarter of adults in the U.S. are functionally illiterate That means they read below the fifth-grade level. That means they read below the fifth-grade level. That means they cant read most newspapers, or the directions on a box of cake mix. That means they cant read most newspapers, or the directions on a box of cake mix. Among inner city minorities, almost 40% read below the 5 th -grade level. Among inner city minorities, almost 40% read below the 5 th -grade level. Source: National Adult Literacy Survey, 1992

Readability of Information on the Internet 70% of parents have used the internet.* 70% of parents have used the internet.* Most English-based web sites are written at a 10 th grade reading level or above. Most English-based web sites are written at a 10 th grade reading level or above. Half are written at a college level or above. Half are written at a college level or above. Most Spanish-language web sites are written at a 9th grade reading level or above. Most Spanish-language web sites are written at a 9th grade reading level or above. * Source: Pew Internet & American Life Project

The Purpose of this Website To create a reader-friendly, practical and informative resource that can be used by parents and those who counsel parents. To create a reader-friendly, practical and informative resource that can be used by parents and those who counsel parents. To engage professionals from diverse disciplines in the development of relevant and accessible materials for parents of diverse backgrounds. To engage professionals from diverse disciplines in the development of relevant and accessible materials for parents of diverse backgrounds.

Plain Language Uses clear language that everyone can understand Uses clear language that everyone can understand Formats text to make it less intimidating and easy to scan Formats text to make it less intimidating and easy to scan Reaches people who cant read well or who dont have time to read carefully Reaches people who cant read well or who dont have time to read carefully Avoids misunderstandings and mistakes Avoids misunderstandings and mistakes

Putting Plain Language into Practice Put directives at the tops of pages. Put directives at the tops of pages. Keep things short – pages, paragraphs and sentences. Keep things short – pages, paragraphs and sentences. Break up text with headers. Break up text with headers. Use words that are familiar to our readers. Use words that are familiar to our readers. Use bullets for lists. Use bullets for lists. Use numerals instead of spelling out words. Use numerals instead of spelling out words.

Editing to Plain Language: 1 st draft – Communication Choices Once your child is a bit older, there are five main communication choices: The auditory oral method teaches children to read lips and speak. The auditory oral method teaches children to read lips and speak. Auditory-verbal therapy helps children use whatever hearing they have left. Auditory-verbal therapy helps children use whatever hearing they have left. In bilingualism-biculturalism children learn American Sign Language and become a part of Deaf Culture. In bilingualism-biculturalism children learn American Sign Language and become a part of Deaf Culture. Cued speech is a way for people to see English. It uses handshapes to show the sounds a person makes. Cued speech is a way for people to see English. It uses handshapes to show the sounds a person makes. Total communication uses all different kinds of communicating, like signing, talking, or writing. Total communication uses all different kinds of communicating, like signing, talking, or writing.

Concerns With Plain Language Does plain language alienate more educated or sophisticated readers? Does plain language alienate more educated or sophisticated readers? Is it possible to convey complex ideas when using plain language? (e.g., genetics) Is it possible to convey complex ideas when using plain language? (e.g., genetics) Do we lose depth in this translation? Do we lose depth in this translation? Does this approach reduce the credibility and the utility of the content? Does this approach reduce the credibility and the utility of the content? Can decision-making tools ever be written in plain language? Can decision-making tools ever be written in plain language?

What (if anything) gets lost with plain language? Original text: Babies start by learning that they are people, separate but related to their parents. They start by finding out that they can get your attention by screaming; get you to smile by making faces; and that you will coo and ooh, and aah with them, just because they are babies! Babies start by learning that they are people, separate but related to their parents. They start by finding out that they can get your attention by screaming; get you to smile by making faces; and that you will coo and ooh, and aah with them, just because they are babies! Babies who are deaf can communicate their needs, use the same facial expressions, smile at the usual moments, but they probably wont hear all of the nice things you are saying to them.

What gets lost? (continued) Babies who are deaf show connection to the people who love them and are taking care of them. They are definitely not aloof or far away in their gaze. Once your baby knows you are there with him, he will lock in on you and study you, trying to sort out what is going on and joining in play. This is his first experience with a relationship, and he is an equal partner in it!

Text edited into plain language Babies start by learning they are people. Babies start by learning they are people. They learn that they are separate but related to their parents They learn that they are separate but related to their parents They learn that they can get your attention by screaming They learn that they can get your attention by screaming The learn that they can get you to smile by making faces The learn that they can get you to smile by making faces They learn that you will coo and ooh and aahhh with them. They learn that you will coo and ooh and aahhh with them. You do it just because they are babies! You do it just because they are babies! Even if babies dont hear the sounds completely, cooing involves your face and body. Even if babies dont hear the sounds completely, cooing involves your face and body. Your deaf baby will enjoy all of this interaction a lot. Your deaf baby will enjoy all of this interaction a lot.

Measuring Success Are we reaching the underserved parents we had targeted? Are we reaching the underserved parents we had targeted? Is the material useful to these parents? Is the material useful to these parents? What is the best way of measuring our success? What is the best way of measuring our success?

Making the website more usable Find out what parents want and need from a website about hearing loss Find out what parents want and need from a website about hearing loss Setting up kiosks for qualitative study of computer-naïve users Setting up kiosks for qualitative study of computer-naïve users Page guides Page guides Parent Forums Parent Forums Make printable pages available Make printable pages available Build relationships with providers who work with parents Build relationships with providers who work with parents

Summary Almost half of all adults in the United States have low or very low reading skills. Almost half of all adults in the United States have low or very low reading skills. Most of the information on the Internet is written at a level too high for the desired readers. Most of the information on the Internet is written at a level too high for the desired readers. Our website, bridges this literacy gap by writing in plain language. Our website, bridges this literacy gap by writing in plain language.