2002 Conference Proceedings

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Chatting, Sharing, Laughing: Kids Make Connections In PatchWorx's Secure Online Community

Teresa Middleton
PatchWorx, Inc.
Phone: 650-859-3382
Email: tmiddleton@aol.com

"I joined PatchWorx because I like talking with people that have gone or are going through the same things I did. I think if (children visiting the site) hear about one survivor, then they'll think they can survive too, and sometimes that is all it takes." Dave, a survivor of two cancerous brain tumors as a 5 year old, whose treatments left him with a learning disability.

Background

PatchWorx is a secure web-based online community for youngsters facing illness and disability who feel isolated and alone because they are homebound. It is a place where they meet, share experiences and laughter, learn from each other, and make friends with common interests. The PatchWorx community enhances lives by offering love and support and-most of all-understanding. It is a place where being different is cherished and celebrated. PatchWorx also offers leadership opportunities for young people to grown and maintain this, their own "place". Dave, for example, is now our official Greeter who welcomes new members, and he also hosts a weekly online chat.

The need for a site like PatchWorx is supported by significant research that identifies (1) the nature of the burdens that chronic illness and disability places on children, and (2) the coping skills they need to support socio-emotional development. Much of that research indicates that children who have strong social support do better when dealing with a serious illness or disability than their counterparts who lack this help. For example, Wallander and Varni (1989) studied 153 children, 4 to 16 years of age with an array of illness and disabilities and found that children with chronic illness can benefit from efforts to improve social support. They identified a number of problems a child with chronic illness must face including, "dealing with the stress associated with treatments… the separation frequently associated with hospitalization… and managing feelings engendered by the condition including anger, anxiety, alienation, and isolation." They discussed the need for the individual to develop coping skills, including those involving problem solving, and the seeking of information or social support.

We know that online communities are powerful places to gain knowledge because they combine access to resources and to peers. In building an online community designed especially for them, PatchWorx provides the opportunity for youngsters learn more about how to be a proactive patient, to gather facts about their condition and have the opportunity to meet others who understand.

Four key elements make PatchWorx an ideal virtual meeting place for children:

  1. Parents can be assured that trained volunteers monitor all the areas where children share information. We obtain parents' written consent for children under the age of 13 who wish to become members, before they are assigned a password to access these areas.


  2. Through our partnership with the National Cristina Foundation (NCF), we are able to supply children with refurbished computers if they need them


  3. We provide opportunities for young users to become leaders, responsible for building and maintaining the network in the future.


  4. There is no charge for membership.

What the Site Offers

The PatchWorx environment is inviting and easy to use. It contains the following areas:

  1. ChatWorx. Our monitored chat room is powered by software designed for easy chat interaction, and is housed on a secure server behind a firewall to repel break-ins from hackers or intruders. Entry is password-controlled so only members (PatchWorx Pals) can take part. Trained volunteers monitor all chats. In the chat room the young people learn from each other. As peers they are natural mentors, and they trust shared wisdom on experiences with similar treatments, setbacks, frustrations, and triumphs. Ask Patches. Our mascot answers questions ranging from serious matters to lighthearted questions. This area is open to anyone visiting the site. Sometimes the questions relate to loneliness, sometimes they have a medical connection. People on our Advisory Board who help develop the appropriate answer review the latter.


  2. Kids' Quilt. An interesting visual aspect of the site is the Quilt. The Quilt is made up of colored patches, each representing a member who has created a page about him or herself. The youngster chooses a "handle" (a name they will use in the chat room or message board), and a color and pattern of their patch. A click on an individual's patch takes the user to the individual story. Anyone can access the Quilt; but only members can write their stories.


  3. Games 'n Stuff. Our webmaster has designed special interactive games for a variety of ability levels and interests. There are links to other game sites, reviewed by us for appropriateness. This area is open to anyone visiting the site.


  4. Bulletin Board. Here youngsters leave messages for each other, make appointments to meet in the chat room, and swap jokes or information. Only registered users may use this area, and postings are monitored prior to being displayed to ensure appropriate content and privacy.


  5. Show 'n Tell. This is an area where youngsters can display artwork, stories and poetry. It can be viewed by anyone accessing the site, but only members can upload their contributions.


  6. Big News. We keep newcomers and members up-to-date with upcoming online events, the name of our Pal of the Month, and other happenings at PatchWorx.


  7. Helpful Links. Although information provision is not our primary goal, we do provide links to related sources that are recommended buy our members.

Privacy and Security

The terms "privacy" and "security" are frequently used interchangeably, but they are not the same. We define each in the following way.

Privacy relates to the safeguarding of information that is collected from users; how it is collected, stored, and used, and whether it is shared with others. The Children's Online Privacy Protection Act (COPPA) spells out conditions for protecting the privacy of children under 13.

Security relates to the safety of the users and their online interactions. To achieve a high degree of safety, the system must be technically secure to block unauthorized parties (such as hackers) from obtaining access to users. Furthermore, the interactions of the users must be safeguarded so they are not open to abuse from others while they are online. System security can be reasonably ensured with technology, but safeguarding the interactions of users requires adult monitoring, particularly in interactive person-to-person environments such as chat rooms and bulletin boards.

The stringent privacy procedures we have developed are described in detail in a document posted on our web site, and on that of the National Cristina Foundation (www.cristina.org). This document is intended for people who supervise any kind of child-focused online community. COPPA requirements and how to observe them are described in detail.

A FINAL WORD

This presentation has described the benefits of the PatchWorx online community for children facing illness and disability. Presenting at conferences is one way we reach out to potential users, to parents, caregivers and others who can help us identify youngsters who would benefit from becoming part of this supportive cyber neighborhood. Please help us spread the word.


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