Transcript Translation Is Not Enough: Developing A Stress Management

Translation Is Not Enough:
Developing A Stress
Management Tool Kit For
Latinas Coping With
Chemotherapy.
Dinorah Martinez, Cathy Meade, Jennifer
Martinez, Paul Jacobsen
American Cancer Society April 19, 2007
Supported by Susan G. Komen Breast Cancer Foundation
Grant # POP 131206
Objectives
Identify the need for stress management
tools for diverse populations.
 Describe how qualitative methods can
inform the development of culture, literacy
and linguistically relevant education tools.

Significance
Paucity of mental health professionals working in
oncology settings (Even fewer that are
Hispanic/Spanish speaking)
 English is not the primary language for many
Hispanics
 Language becomes barrier for accessing
benefits, services, information, or
understanding and coping with medical
treatments, contributing to health inequities.
 Office of Minority Health/
CLAS
Impact of Culture and literacy
on Cancer Care





The cancer experience cannot easily be separated
from its cultural context.
Illness and anxiety often reduce understanding
How we get and receive information and how it is
presented and by whom impacts what is done with
the information.
Affects the way people communicate, how they
receive information and how they give information.
It shapes your world view and how the world sees
you.
Builds on Evidence-based
Research*
Patients receiving self-administered
intervention reported significantly (P
< or = .05) better physical
functioning, greater vitality, fewer
role limitations because of emotional
problems, and better mental health.
 Favorable costs of SSMT
 Enhances patient access to
psychosocial intervention during
chemotherapy.

* Jacobsen PB, Meade CD, Stein KD, Chirikos TN, Small BJ, Ruckdeschel JC.
Efficacy and costs of two forms of stress management training for cancer
patients undergoing chemotherapy. J Clin Oncol. 2002 Jun 15;20(12):2851-62.
The SSMT Teaches 3
techniques
Abdominal breathing,
 Progressive muscle relaxation training with
guided imagery, and
 Positive coping self-statements

Pilot to Assess interest and
Need (n=20)
Have you used any stress management
techniques during chemotherapy?
– N=10 had used techniques to reduce stress
(answers ranged from exercise to prayer)
– none had received any formal training
– none had received take-home materials
 Would it have been useful to have stress
management materials in Spanish?
– 95% “very useful”
– 95% “very interested” in learning techniques
 Reactions/responses to current Coping with
Chemotherapy (English SSMT).

– All women (100%) responded yes
Study Aims



Phase I Aims
– 1. To conduct formative research (series of focus
groups, in-depth interviews) to explore the coping
and stress management needs of Latina breast cancer
patients who undergo chemotherapy.
Phase II Aims
– 2a. To design, produce and adapt an educational
intervention about stress management for Hispanic
breast cancer patients.
– 2b. To evaluate the suitability of the intervention in
terms of acceptability, attraction, understanding, selfefficacy, persuasion, and overall satisfaction.
Phase II Aims
– 3. To conduct a final evaluation of the Spanish
language self-administered stress management
intervention.
Project Overview/Timeline
Phase I (Months 1-8)
A. Formative Research
Qualitative
Qualitative Methods
Methods
4 Focus Groups (FG)
(n=48 participants)
In-depth interviews (n=10)
with Latinas currently
receiving chemotherapy
Key informant interviews
(n=5-10) with health
providers that serve Latina
cancer patients
Analysis
Phase II (Months 9-18)
B. Adaptation and
Development of SSMT
Infuse information obtained
from the formative research
Cultural and linguistic adaptation
and development of the SSMT
ABooklet
BVideo/DVD
CAudio CD/Cassette
DOverview card
Three pretesting iterations
(n=30) to assess suitability
-acceptability
-attraction understanding
-self-efficacy
-persuasion
-Overall satisfaction
Phase III (Months 19-24)
C. Final Evaluation
Final reactions to the
Spanish SSMT
2 Focus groups with Latina
Breast cancer patients (n=24)
and 1 focus group (n=12) with
health providers
- To evaluate Spanish SSMT in
terms of final reactions and
satisfaction with educational
tools
- To identify the best ways to
disseminate
Dissemination of Findings
- Present findings to local
Latina breast cancer support
groups, local and national
conferences
- Publications
Spanish SSMT
OUTCOME: It is anticipated that this project will yield a cultural, linguistic and literacy relevant Spanishlanguage self-administered stress management training intervention that can then be pilot tested and
evaluated for efficacy in a larger multi-site intervention study.
Sample and Recruitment



Purposive and snowball sampling techniques
Inclusion Criteria:
– self-identify as Hispanic/Latina; breast cancer
diagnosis; speaks Spanish; 18 years of age or
older.
 In-depth interviews (n=10): are currently
receiving chemotherapy or scheduled for
chemotherapy
 Focus Groups (n=4): have received
chemotherapy as a treatment modality within
the last 12 months;
Key informants:
– Health professionals, advocates (n=5-10) who
work closely with Latina breast cancer survivors

April 2007 – Procedure Modification
Qualitative Methods
Exploratory nature
 Multiple Perspectives/ experiences
 Allow us to develop the intervention in a way that that is
culturally and literacy relevant.
 ‘Truth’ lies in understanding actions, beliefs and values of
others, from within the participant’s frame of reference
 Wanted to capture the spectrum of Latina experiences
with chemotherapy

– coping and stress management needs
– reactions to the existing English intervention
– ideas about the content, tone, character development, music and
other elements of message design
Methods
IRB approval
To date we have conducted:
– 10 in-depth interviews
– 9 provider interviews
– 2 focus groups/discussions
 Interview guides/questions done orally
– Demographics, cancer and chemotherapy
experience, coping, stress management skills,
review components of English SSMT


Data Analysis





Interviews were tape-recorded, transcribed
verbatim,
Manually coded and then reviewed by members
of the research team
Content analysis used to assess emergent theme
Presenting findings from the 10 in-depth
interviews
Preliminary results of Health Professional
interviews
* In-depth Interview
Preliminary Results
Demographics (n=10)
Age
– Range: 30-59 yrs
 Place of Birth
– 10% USA, 10%
Ecuador, 10%
Mexico, 10% Cuba,
10% Puerto Rico,
10% Panama, 30%
Columbia.
 Average number of yrs
in US (n=9)
– 40% (1-10 yrs)
– 60% (11-30 yrs

Travel back/forth to
homeland frequently
– 40% yes
 Education
– 10% 6th or less
– 40% some HS/ HS
– 50% Some College/
College
 Marital Status
– 60% Married
 Employment
– 40% Unemployed
– 60% Employed

Demographics (Cont)
Language spoken
– 40% Spanish only
– 60% Bilingual
 Language read
– 10% English only
– 30% Spanish only
– 60% Bilingual
 Language preference for
health/cancer
information
– 10% English
– 90% Spanish

Year diagnosed
– 20% in 2005
– 80% in 2006
 Stage at diagnosis
– 30% did not know
 60% did not know
what kind of cancer
they had

What are the most important
things in your life?




1.
2.
3.
4.
–
Children,
Family,
Health and getting better,
Life
“My children… And now my health.”
~ Puerto Rican 34 yrs old
–
“For me, it is that they cure me as soon as possible, so
that I can go back to work. I need to pay my bills, I
don’t have the means to even pay for my rent. To
persevere.”
~ Mexican 54 yrs old
Q: Tell me about your cancer experience
1.
2.
3.
Saw cancer as an opportunity for change and
personal growth
Feeling fear, anguished, alone
Turning to God, enhanced spirituality
–
“I see it as a lesson to make positve changes in my
life, and a chance to be closer to God, to be more...
to undertsand that God is taking care of me. Stress
is produced by anguish and the first minute you are
told you have cancer, but it [cancer] has been more
of a life lesson than anything else. You have to
surpass it and you need to manage your stress,
becasue if not it manages you and that can also
affect other aspects of your health.”
~ Columbian, 39 yrs old
Q: Tell me about your chemotherapy
experience
1. Physical side effects:
1. nausea, 2. vomiting, 3. loosing hair, 4. heat flashes
“By hard I mean it’s like I mean, you know, you throw up,
you get nauseated, you can’t even get up in bed. You feel
horrible… Like the whole world just slaps you and just left
you there. You go through a whole lot of different
emotions. …Losing my hair was pretty hard… It’s like you
don’t know who you are anymore.
~ Puerto Rican, 34 yrs old
2. Cleansing
– “I don’t see it as a drug. I feel it is like the blood of Christ,
going inside and cleansing me, because everything is
changing for me.”
~ Ecuadorian, 48 yrs old
Cont.
3. “Getting” chemo was not as bad as expected
– “Y’ know, I had heard about many bad experiences, like my
freind who came back really sick … Well, When I saw they were
sticking all that stuff there [port] and nothing was happening to
me, I did not feal anything. The experience was completely
different to what I expected. ... And then when it was over, they
took it out and said “ok you can go now” I said “that’s it?” I got
up, did not get dizzy, nothing happened, I walked and said
“Pedro, Let’s go!” and he said “ah Dios, How can that be?”
~ Puerto Rican, 56 yrs old
– “ Look at yesterday… I graduated with chemo and was there
with cap and gown. (Laughter) I sure did. I wore a cap and
gown,… People were looking at me like…they thought I was
graduating from college. I said, ‘no, chemotherapy’. And I’m
like, ‘where’s my diploma?’ (Laughter) You know? And I took a
picture with my gown.”
~ Puerto Rican, 34 yrs old
Words used to describe stress

Described as something pyschological and
physical
– “Stress is something, it is like the world falls on top
of you and you don’t know what to do. And you try
to react and do something...”
– Being constantly worried, always thinking
– “Nervios”/ Nerves
– “It makes you tremble, shake. It makes you
susceptible, sensitive, you cry, it can make you
irritable and angry.”
– “Well, it riles up your body, your whole system.
– “Stuff falling all on you.”
Q: What was stressful during treatment

Not knowing / lack of information about the drugs they were given/the
secondary side effects
– “I, for example, I don’t know the names of the drugs that they are
giving me. I tried to get them yesterday from the oncologists during
my appointment, but since there is such little time I can not talk too
much. She almost did not have enough time to give me the info
about the tumor, I have not been able to ask about the rest of the
stuff yet. For example, the chemo combinations they are giving me,
if they have changed them...for the second or third time. I have not
been able to ask.”
~ Ecuadorian, 48 yrs old


Time waiting for the infusion to be over
Not being able to care for their family (e.g., younger children)
– “I was stressed out when I was diagnosed as far as who was going
to watch my children when in chemotherapy… Who is going to
watch my children and be there in the night? Even when my
mother-in-law watches my children it’s not the same because you’re
there in bed and when they cry you feel hopeless, you can’t do
nothing. It’s hard. … It’s the most stressful thing for me.
~ Puerto Rican, 38 yrs old
Cont.

Immigration-related, being away from family, need of
support
– “I have lost a lot of time and miss my family very much.... In my
country I had a good job, but you keep going, living and don’t value
the resource and support you have when your family is near. ... You
really value them when you are far away and it is even worse in this
situation...”
~ Columbian, 53 yrs old
– “He [son] is alone. We are both alone. That worries me. May God
help me get better and... Lets see what I can do, how I can get him
here or... I don’t know. What ever God wants. But he is my priority
and my mom too.
~ Ecuadorian, 54 yrs old

Financial aspects, not being able to work during treatment
– “Well, what casues me the most stress is for example not being able
to work. They approved food stamps and medicaid but not until
February, I don’t have anything till then (Speaking in tears).
~ Cuban, 35 yrs old
Learning needs during
chemotherapy
Nutrition – what to eat.
– “About Nutrition. Because there are lots of opinions, that
say for example, you need to eat more carefully. Well,
more healthy, like eating less fat. Well, some say you
should not eat any fat at all. Yesterday, I asked my
doctor, “Doctor, they have told me that the first thing
chemo attacks is fat, it takes the fat and that you have to
try and maintain the fat, right?” and I asked, “Well, what
does that mean, what is included? What should I eat?” I
have doubts. I am not convinced..”
~ Panama, 47 yrs old
 Information about the drugs they are given and how to
manage side effects
 Exercise and ways to relieve stress

Methods to reduce stress during
treatment



Writing/Reading
– Bible, spiritual psalms
Exercise
– Walking, Relaxation on beach and in the water
Positive Thinking
– “That you are one and the same, take care of yourself and
always fight to live... Do not have negative thoughts, if not
the opposite, try to be positive, say “I am going to get
through this, I am going to get cured? And that is a great
help. Being positive.”





Prayer/Meditation
Deep breathing
Crafts (drawing, knitting)
Talking with family and friends
Learning English
Stress Management




Did anyone talk to you about any ways to reduce
stress during your chemotherapy?
– All answered NO
Is there any relaxation or stress management
technique you would like to learn about?
– Breathing exercises, Reiki, Positive Thinking, Pain
Management, Relaxation methods
Would you do these by yourself or with someone
else?
– Alone: Exercise, Prayer, Reading, Crafts
– Group: (with spouse/family/friends) Exercise
Do you think that this will be useful for Latinas
undergoing chemotherapy?
– All said YES
Suggestions for Spanish SSMT
Who should teach women these techniques
in the video?
– Someone who has gone through it, who know
what it is like, that can speak from experience
– Doctors/ health professional/ well educated =
who know what he/she is talking about
– All said it should be a native Spanish speaker
– Majority said it should be a woman
 When and where would you like to receive
these materials?
– Before women start chemotherapy

Suggestions for Spanish SSMT

Do you have any suggestions for our
project?
– The overwhelming response was changing the
color and making it more “lively” use vibrant
colors (yellow, red, orange), some said “not
pink”
– They also mentioned making the video as if it
were following a true story so that the women
can relate. Some suggested following one
woman through chemo, before, during and
after…
Preliminary Results: Health
Professional Interviews (n=9)
Verified that the lack of mental health, stress
management, support programs in Spanish
 Experiences with Latina cancer survivors

– Socio-economic barriers, patient/provider
communication issues
– Differences between Latina and non-Latina
patients
 Differences between Hispanics by region/nationality
 Differences between older/younger women

A Spanish SSMT would be very useful and
they would be willing to disseminate
Next steps
Conduct 10 additional in-depth interviews
 Conduct 1 more Focus group
 Qualitative analysis
 Infuse information from Phase I
 Begin Phase II : Adaptation and development
of Spanish SSMT

Lessons learned







Participant Observation
– Attended Latina support group meetings
– Observations at the infusion center at Moffitt
Need for information in Spanish
Need for mental health, stress management
programs that are culturally and linguistically
relevant
Patient/provider communication issues
The importance of family and spirituality
Need to consider added stressors related to the
immigration context
Flexibility
Acknowledgements








Susan G. Komen for the Cure
H. Lee Moffitt Cancer Center
LUNA, Inc
FE (Fortaleza y Esperanza)
LUNA de Pinellas
Melba Martinez, RN
Centers for Radiation Oncology
TBCCN (Tampa Bay Community Cancer Network)
Together we can make a difference…
We need more hands, we need yours.