Title: Translation Is Not Enough: Developing A Stress Management Tool Kit For Latinas Coping With Chemotherapy.
1Translation 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
2Objectives
- 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.
3Significance
- 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
4Impact 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.
5Builds on Evidence-based Research
- Patients receiving self-administered intervention
reported significantly (P lt 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 1520(12)2851-62.
6The SSMT Teaches 3 techniques
- Abdominal breathing,
- Progressive muscle relaxation training with
guided imagery, and - Positive coping self-statements
7Pilot to Assess interest and Need (n20)
- Have you used any stress management techniques
during chemotherapy? - N10 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
8Study 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, self-efficacy,
persuasion, and overall satisfaction. - Phase II Aims
- 3. To conduct a final evaluation of the Spanish
language self-administered stress management
intervention.
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10Sample 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 (n10) are currently
receiving chemotherapy or scheduled for
chemotherapy - Focus Groups (n4) have received chemotherapy as
a treatment modality within the last 12 months - Key informants
- Health professionals, advocates (n5-10) who work
closely with Latina breast cancer survivors - April 2007 Procedure Modification
11Qualitative 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
participants 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
12Methods
- 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
13Data 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
14 In-depth InterviewPreliminary Results
15Demographics (n10)
- 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 (n9)
- 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
16Demographics (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
17What are the most important things in your life?
- 1. Children,
- 2. Family,
- 3. Health and getting better,
- 4. 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 dont have the means to even
pay for my rent. To persevere. Mexican 54
yrs old
18Q Tell me about your cancer experience
- 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
19Q Tell me about your chemotherapy experience
- 1. Physical side effects
- 1. nausea, 2. vomiting, 3. loosing hair, 4. heat
flashes - By hard I mean its like I mean, you know, you
throw up, you get nauseated, you cant 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 Its like you
dont know who you are anymore. Puerto
Rican, 34 yrs old - 2. Cleansing
- I dont 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
20Cont.
- 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 thats it? I got up,
did not get dizzy, nothing happened, I walked and
said Pedro, Lets 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 likethey thought I was graduating from
college. I said, no, chemotherapy. And Im
like, wheres my diploma? (Laughter) You
know? And I took a picture with my gown.
Puerto Rican, 34 yrs old
21Words 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 dont 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.
22Q What was stressful during treatment
- Not knowing / lack of information about the drugs
they were given/the secondary side effects - I, for example, I dont 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 its not the
same because youre there in bed and when they
cry you feel hopeless, you cant do nothing.
Its hard. Its the most stressful thing for
me. Puerto Rican, 38 yrs old
23Cont.
- 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 dont 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 dont 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 dont have anything till then (Speaking in
tears). Cuban, 35 yrs old
24Learning 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
25Methods 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
26Stress 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
27Suggestions 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
28Suggestions 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
29Preliminary Results Health Professional
Interviews (n9)
- 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
30Next 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
31Lessons 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
32Acknowledgements
- 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)
Thank you
33Together we can make a difference We need more
hands, we need yours.