Transcript Education - Amazon Web Services

Rula Wilson, DNSc, RN, UMDNJ-School of Nursing
Diane R. Brown, PhD, UMDNJ-School of Public Health
Makini A. S. Boothe, BA, UMDNJ-School of Public Health
Francis L. Weng, MD, Saint Barnabas Medical Center
Sept. 13, 2012
Presentation at the 2012 National State of the Science Congress on Nursing Research
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Kidney transplant is best treatment option for endstage renal disease (ESRD)
In 2008, only 37% of kidney transplants in the US
were living donor kidney transplants (LDKT)*
Studies have not examined patient education needs
at different stages of the transplantation process
More research is needed about patient educational
needs to ensure that patients are making informed
decisions about their treatment options
* 2009 Annual Report of the U.S Organ Procurement and Transplantation Network and the
Scientific Registry of Transplant Recipients: Transplant Data 1998-2008.
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The purpose of this study was to examine
perceptions of patients at various stages of
transplant towards the delivery and format
of a kidney transplant education program in
a clinical setting. The study aims were to:
1. Identify useful aspects of the transplant
education process
2. Discuss aspects of the educational program
delivery that need improvement
3. Provide recommendations to enhance the
education delivery and format
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Descriptive study, using focus groups
1-2 hour, audio-taped, semi-structured
group discussions
Participants recruited from Saint Barnabas,
by the SBMC research staff
3 focus groups:
◦ In Evaluation, Listed, Transplanted
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Data analysis:
◦ Thematic content and standard focus group
analysis techniques
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Potential candidates and family and friends,
attend the formal education program
90-120 minute formal educational session
◦ Presentation on kidney transplant options, the surgery,
long-term care after transplant, etc.
◦ Short meeting with a volunteer patient advocate, a recipient
of a kidney transplant
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Individual meetings with each member of
the transplant team (nurse coordinator, transplant
nephrologist, social worker, dietician)
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Age Range
30-49
>50
Gender
Male
Female
Race/Ethnicity
Asian
African American
Hispanic/Latino
White
Marital Status
Single
Married/Partnered
Divorced/Widowed
Education
High School/GED
Some college
Bachelor’s Degree
Post-Bachelor education
a
Transplanted
(n=7)
Listed
(n=7)
In Evaluation
(n=5)
Total
(N=19)
0 (0%)
7 (100%)
3 (53%)
4 (57%)
1 (20%)
4 (60%)
4 (21%)
15 (79%)
4 (57%)
3 (43%)
4 (57%)
3 (43%)
3 (60%)
2 (20%)
11 (58%)
8 (42%)
0
1
0
6
1
1
0
5
0
2
2
1
(0%)
(40%)
(40%)
(20%)
1 (5%)
4 (21%)
2 (11%)
12 (63%)
(0%)
(14%)
(0%)
(86%)
(14%)
(14%)
(0%)
(71%)
0 (0%)
6 (86%)
1 (14%)
1 (14%)
5 (71%)
1 (14%)
1 (20%)
3 (60%)
1 (20%)
2 (11%)
14 (74%)
3 (15%)
2
3
1
1
2(33%)a
2(50%)a
1(17%)a
0(0%)a
0
3
1
1
4
9
3
2
(29%)
(43%)
(14%)
(14%)
(0%)
(60%)
(20%)
(20%)
(22%)b
(50%)b
(17%)b
(11%)b
One observation was missing for the Listed group; the denominator is 6
b One observation was missing from the Total; the denominator is 18
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Satisfied with the education program,
staff, and printed materials/handouts
◦ “I felt it was a very, very informative day, and I
think they ran it very well. There was no lapse in
between, and they addressed all the issues.”
◦ All my questions were answered and I got a
wealth of information from the session. I really
did.”
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Easy to call the transplant staff after
education
◦ “I did call individual people and speak with them so
that to clarify things… It was very helpful. Whenever
you felt that was overloading you during the
education program, you still get clarification.”
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The “group format” allowed participants to
learn from others’ questions
◦ “I thought the group was good because there were
other people that may ask questions that maybe you
wouldn’t have asked.”
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Useful, informative, and inspirational
Explained the mindset and emotions of
going through kidney transplantation
◦ “She explained about your mindset and your emotions
going through kidney transplant. She explained
everything she went through. We was just sitting there
with our mouths open. It was the best part for me.”
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Some stayed in contact with the patient
advocate after the program
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Most remembered that kidney transplant
options and the pros/cons for LDKT and
DDKT were discussed.
◦ “I remember they said that a living donor is
better than a cadaver.”
◦ “I did understand the process and the pros and
cons, like you said. It was pretty clear to me as
well.”
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84% brought someone (mainly spouse)
Moral support and assistance with decision making
process, remembering important information,
asking questions, keeping things filed and
organized, and keeping the patient on track with
medications, diet, follow-up visits, etc.
◦ “I brought my wife… as the moral support. She asked a
few questions herself… just having her there with me
made me feel a little better. She took notes and things.”
◦ “It helped, [my wife] has everything in a file folder at
home. Oh, does she organize it…When I’m trying to con
her into eating something she’ll say this is on the no list…
She said she was glad we came.”
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Involving companions in the education
program contributed to the decision making
process about transplant options
◦ “That’s what made my daughter decide that day,
come hell or high water, she was going to be the
donor. It was helpful.”
◦ “My wife was with me, and then she turned out to
be the living donor. So her education was far
more important than mine.”
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Program was overwhelming, technical, long,
rushed, and overloaded
◦ “There were a lot of things I didn’t understand… medical
terms… I don’t know what the hell they’re talking about.”
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Most did not remember the content of the
slide presentation
◦ “I don’t remember the slide show at all. I mean, I remember
it, but I can’t remember what was on the slide show.”
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Did not know what to expect
◦ “I didn’t know what to expect from the beginning because
you’re sent this notice that you’ve been invited to a preevaluation, and I wasn’t sure what that actually meant.”
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Varying levels of knowledge, learning needs
◦ “I think sometimes statistics are important in your
decision making. Yeah, for me it was important.”
◦ ““[T]he percentages of this and the numbers of that. There
were too many numbers. I’m not a numbers person.”
◦ “Tell me some more basic things… Explain what your
kidneys [are], the function of your kidneys and stuff.”
◦ “[More about] the actual procedure and all the risk
involved in getting an actual kidney
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More information needed on LDKT options
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Confusion about financial/insurance issues
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Lack of information on how to approach
family members and others about LDKT
• “It’s hard to ask somebody. If you don’t have family and
real close friends, how do you come up to somebody
and say, are you willing to be my donor?”
• In Evaluation participants:
• Felt guilty about asking, had overwhelming concern
about the risks to the donor, and resolved themselves
to not considering LDKT
• Listed participants:
• Needed more information about LDKT, exchange
program, and donors from other countries
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Video on kidney transplant
Copy of the slides prior to the program
Materials given beforehand about the types
of kidney donation
◦ “After you see the video, you can come in and we have
set up a meeting for you to talk about the video and
any questions that you have from watching the video.”
◦ “Several pages stapled together would each have a
shot by shot of each slide of what’s going to be in the
presentation and anything written to the side of it.
They give it out beforehand.”
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Encourage patients to bring a companion or
more with them to the education program
◦ “I think it’s always important to have somebody
there when you’re making an important
decision… Somebody who might have a question
that you didn’t think of. I mean it’s a big deal
what we’re going through.”
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Use an agenda and a formal invitation letter
for the education program
 “Well, if they were going to invite you to this meeting,
they could say beforehand, would you like literature sent
to you by book form or a video of what’s going to
transpire that day, what they’re going to talk about.
Because maybe some people like to read it rather than to
watch it.”
 “If they send you an agenda what they’re going to do,
you would do more research of that. And so when you
came, you just would ask questions that you needed
more information on and then that would cut some of
that time off that…”
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Remain a “one-day” program
Reorganize the content of the education
program to allow time for more detailed
information and discussion
◦ “I probably would say shorter, but people probably
don’t want to have to come back again, so maybe they
could just condense it a little bit.”
◦ “I would think break the financial and a few other
things off from the main [part of the education
program].”
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Combination of video and in-person
Provide specific education for companions
and potential donors
◦ “[The education program] would be more
beneficial to the donor as far as educating them
because they’re the ones that have to give their
kidney away…”
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Using a brief follow-up
meeting/conversation to clarify or answer
questions
◦ “Maybe they could have a follow-up meeting.
After you have that and you go home and you
read all your literature, or you go on the Internet
and go into the web sites and find things, then
you can come back like this for a follow-up
meeting.”
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Create a formalized, ongoing training
process for patient advocates
Address skills on how to approach others
about LDKT
Assess health literacy in order to address
different levels of knowledge and varying
educational needs
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Use a more interactive approach and
education methods for adult learners
Explore the innovative use of technology
Establish a routine process of program
evaluation
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This project was made possible by Grant R39-OT15059
from the Division of Transplantation, Health Resources and
Services Administration, US Department of Health and
Human Services. Its contents are solely the responsibility of
the authors and do not necessarily represent the official
views of the Division of Transplantation, Health Resources
and Services Administration, US Department of Health and
Human Services.
Appreciation is expressed to:
◦ Those who participated in the focus groups
◦ Janice Purpura and the research staff at St. Barnabas Medical
Center for their efforts in recruiting and setting up the focus
groups
◦ Richard Warren, a student research intern, for his assistance with
manuscript preparation
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Corresponding Author: Rula Wilson ([email protected])
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