WELCOME

Parental Informed Consent

 
Welcome, parents, to this page that describes my project, a project where your children will be the experts, and I’ll be helping them to tell their stories.

SO WHAT'S IT ALL ABOUT?

My goals in creating and maintaining this website are to:
  • educate others to the experience of growing up with 'differences'.
  • provide age-appropriate information about chronic medical problems in order that those who live with them might feel somewhat empowered and less afraid, and that those without might learn that their friends and classmates are most importantly children, and only secondarily, sick or disabled children.
  • replace the stigma that too often accompanies illness and disability with positive attributes associated with being 'special'.
  • reduce the incidence of teasing among children as it relates to illness and disability.
  • provide children with some ideas about how to treat one another in school, regardless of their similarities or differences.
  • sensitize teachers, parents and health care providers to issues raised by children, the true experts of the website.
  • offer a forum for children's stories, poetry and essays.
I’d like to communicate with your children over the World Wide Web to learn about their lives. To learn about their going to school, and making friends, and living with chronic medical problems...And about whatever else they’d like to tell me. You are welcome to help them answer the questions that I will pose to guide them, but I'd like the content to come directly from the children.

I've looked for themes that recur in the stories that I receive, and from them, I've developed an educational story for young children, as well as a number of interactive pages throughout the site. I consider Band-Aides and Blackboards a work in progress, and hope to receive more narratives from children as "the word spreads". Their words are so touching and critically important to the project's goal: that of sensitizing others to what it's like to grow up with medical problems.

WHAT WILL YOU DO WITH ALL OF THE INFORMATION?

With your permission, I will help your children (should they be interested) tell their stories  for inclusion on my website, Band-Aides and Blackboards, with the hopes that their words will educate both children and adults to what it's like to grow up with medical problems. In addition to the stories, I plan to use the site to
  • provide children with age-appropriate information about health.
  • sensitize children and adults to the issues that accompany illness.
  • supply on-line resources to address the needs expressed by you and your children.


HOW WILL YOU PROTECT THEIR PRIVACY?

  • I will require parental permission, as well as child assent, to any material published from a child.
  • Although information from the children will not be anonymous if you permit the use of their names, I will handle all of the data that I receive in a confidential manner.
  • Neither the identity of the children nor any identifying information will be used unless you and your children prefer to be identified by name.
  • I will suggest that email links be directed to you rather than to your children in order that you might screen notes sent their way.
  • Anything that the children communicate to me will be used exclusively for the purposes outlined above.
  • With your permission and understanding that their identities will be known, I will include photos of them at play, in the hospital, with their sisters, brothers, friends, whatever and whomever they'd like others to see! (Of course, if other children are featured, I will require their permission and that of one of their parents).
  • The use of their pictures or any individual stories that they'd like published will of course affect the degree of anonymity afforded. I will be happy to include their signed or unsigned masterpieces, with your permission.

IS THERE ANY RISK INVOLVED?

  • There is a risk that children might feel some anxiety as they recall memories and events related to their illnesses. My experience with children has been that rather than anxiety, they are excited about actually being able to teach their classmates what they deal with and how they learn to live with it.
  • The Internet is a powerful medium for good, but it can also be dangerous. Should any child receive questionable or negative email, I advise them to let you know, to let me know, and to definitely not answer the mail received. In the seven years since the inception of this web project, no child has notified me of receiving any such mail. Conversely, I have enjoyed many letters telling me of the incredible support your children have received in relation to their stories. 
  • Please know that should you or your children request that their stories be updated, edited or removed from the site, I will immediately do so, at any time, for any reason.

HOW DO I GIVE MY PERMISSION?

Take a look at the kid's consent form and then drop me a line with your permission for your children's participation. Please let me know if it's OK for pictures to be published and for a link to direct mail to you or your child. I can receive pictures as e-mail attachments, or you can send them to me at the address below. I hope that you'll be interested in the project, and will forward my invitation to your children.


Please call me
at 718-960-8898
if you have any questions or concerns.
Thanks for your assistance and your support of this endeavor!

 
To the frog ponds
 To the sitemap
 To the kids' pond

Joan Fleitas, Ed.D., R.N.
Associate Professor of Nursing, Lehman College, CUNY
Bronx. New York 10468

Last updated: March 27, 2009