UT research project looks at ‘Digital Storytelling’ to help those with HIV or AIDS communicate end-of-life wishes

KNOXVILLE (WATE) – It’s something most of us don’t want to think about, but do you know how to make sure those you love know your wishes at the end of your life?

Many don’t have the resources to hire an attorney for that, but a new study at the University of Tennessee is looking at a different way to handle these issues for some patients. It lets you simply tell your story and share it with anyone you want.

“Theresa, Raphael, I wanted to leave something special for you. I hope this will help you remember how much I love you both and can be a little piece of me you can carry with you always.”

Those are touching words from a mother dying of AIDS to the children she’ll never see grow up.

"It made me think how quickly everything can go. And how for granted we can take everything," said Shea Madison Holcomb about the experience.
“It made me think how quickly everything can go. And how for granted we can take everything,” said Shea Madison Holcomb about the experience.

It’s a moving video message and just one of several digital stories that are part of a UT College of Nursing pilot research project.

The characters in each are actually UT theater students, but the stories are drawn from real nursing research in our area.

Associate Professor of Nursing Sadie Hutson got the idea for the project, based on her research funded by the National Institutes of Health. Real AIDS patients in Appalachia shared their stories.

Hutson’s goal is to create a tool to help people with HIV or AIDS and not many resources to communicate their end-of-life wishes.

“This provides them with a commercial product and a way to record their own wishes without having to get an attorney to do that for them,” said Hutson. “You could make a legal argument for having this be a legally binding end of life agreement.”

“I’m now 22 years old and have come to terms with my disease. That’s not to say I’m any better off than I was before or any more okay with what is happening to me. I’m going to die,” said Shea Madison Holcomb, portraying an AIDS patient.

The project also provides life lessons for the students taking on the roles of real patients.

“It made me think how quickly everything can go. And how for granted we can take everything,” said Holcomb about the experience.

It also teaches what a gift a life story can be for those left behind.

Hutson is applying for grant money to stretch this project out. The videos we showed you will be shown to focus groups to find out if they think digital storytelling would work, what the challenges might be and how it might help patients nearing the end of their lives.

For more information, Hutson may be contacted via email at shutson@utk.edu or by telephone at (865) 974-7585.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s