Stories from Learners and Patients

From LiteracyTentWiki

These are stories from adult literacy learners and others about communicating with health care providers or finding your way around the health system. What makes these interactions difficult? What makes them successful?


How to add your own story:

1. Register (If you haven't yet, it takes under a minute.) by going to: http://wiki.literacytent.org/index.php?title=Special:Userlogin&returnto=Main_Page Then, return here.

2. Select the "edit" tab at the top of this page. This will bring you "under the hood", where you can add or change text. If you see some code there, ignore it. Just type in your text at the bottom of the page. Scroll down using the blue, vertical slider on the right. You could, of course, put your text in where you think it is supposed to go. If you get it wrong, don't worry. You can change it, or someone else will. In other words, you can learn how to add text to the wiki -- with formatting and in the right place -- or, if you don't have the time or patience for this, just add text at the bottom of the page. We'll make the adjustments for you.

3. Select "Show preview" at the bottom of the edit page to see your changes. If they look good, select "Save page". You can select "Show preview" and make changes as many times as you want before you "Save page". (You can even make changes after you "Save page.")

4. Add your name and (if you like) your email address after your comments so readers can contact you.

There is no way you can mess things up. Even if you accidentally erase a page it can easily be restored. So, don't worry. Give it a try. If you need help, contact Julie McKinney at: jmckinney@worlded.org


Stories:


I recently attended the Symposium,” Health Literacy: The Foundation for Patient Safety, Empowerment, and Quality Heath Care,” put on by the Joint Commission on Accreditation of Healthcare Organizations. The event was held June 26 and 27.

I came away from the symposium with good feelings. I felt good because two of us were former adult literacy students. We were invited to speak as part of the program and our voices were heard! When we are seen and heard this can brings a message of hope to others outside the health field-the message that we are, and we should be, involved in our own health care.

A lot of things were discussed and a lot of different things will happen because of this symposium, but the thing that I took away from the symposium was how important doctor and patient communication is. One of the things that was encouraged was not to suppress patient questions, but to create a climate to get the patient to express themselves. Another thing that was encouraged is for patients to be open right at first part of their visit. Not wait until the end of the office visit to ask the most important question.

After attending the symposium when I got home I had a visit set up to see a doctor. I was looking forward to this visit after being at the symposium. I had never been seen by this doctor before. He appeared to be a very pleasant and a nice person. He asked me some questions then handed me a prescription and when I ask him a question he was out the door before I got an answer. All the good things I had taken in at the symposium now had disappeared in my mind and I realized we, as doctor and patient, did not communication.

Where do we go from here? Two of the things we need are more patient to be willing to advocate for themselves and more health care professions to advocate for the better patient communication with their colleagues.

Archie Willard
Adult Learner
Health Literacy Advocate


This link takes you to a video of a striking story from a woman who did not understand a consent form.
http://www.ama-assn.org/ama/pub/category/15369.html

  • Go the link to see a list of videos created for physicians from the group: Educating Physicians on Controversies in Health (EPoCH).
  • Scroll down to the title: "Uninformed Consent: What Can Happen When A Patient Does Not Understand The Information You Have Provided?"
  • You can watch the whole 7-minute video, or click "next" at the bottom right to go directly to the Case Example.

This link leads to a 6-minute video showing interviews with patients who have low literacy skills: http://foundation.acponline.org/hl/hlvideo.htm


This is a link to My Life Story with Cancer, by adult learner Mary Walker. It was written for other adult learners and is accompanied by links to materials for teachers to use the story in a classroom.


How Hospitals and Long-term Health Care Facilities Work This is a page of narratives by patients, their families and friends. These are stories about what they have learned about hospitals and long-term care facilities, how the care-giving organizations work. Each story is based upon at least one important discovery -- from a patient or patient's family or friends -- about how the health organization works, how to get better service, what questions to ask.