Translation Is Not Enough: Developing A Stress Management Tool Kit For Latinas Coping With Chemotherapy.

1
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

2
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.

3
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

4
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.

5
Builds 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.
6
The SSMT Teaches 3 techniques

• Abdominal breathing,
• Progressive muscle relaxation training with
  guided imagery, and
• Positive coping self-statements

7
Pilot 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

8
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, self-efficacy,
  persuasion, and overall satisfaction.
• Phase II Aims
• 3. To conduct a final evaluation of the Spanish
  language self-administered stress management
  intervention.

9
(No Transcript)
10
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 (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

11
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
  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

12
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

13
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

14
In-depth InterviewPreliminary Results
15
Demographics (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

16
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

17
What 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

18
Q 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

19
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 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

20
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 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

21
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 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.

22
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 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

23
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 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

24
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

25
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

26
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

27
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

28
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

29
Preliminary 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

30
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

31
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

32
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)

Thank you
33
Together we can make a difference We need more
hands, we need yours.