Social Support among Samoan Social Support among Samoan Breast Cancer SurvivorsBreast Cancer Survivors

Melanie Melanie SabadoSabadoSoraSora Park Park TanjasiriTanjasiri, , DrPHDrPH, MPH, MPH

SalaSala MataaliiMataaliiMarion Marion HannemanHanneman

NCI Cancer Health Disparities SummitNCI Cancer Health Disparities SummitJuly 14, 2008July 14, 2008

BackgroundBackgroundBreast cancer is the most common cancer among Breast cancer is the most common cancer among Samoan women, Samoan women,

Breast cancer account for about 27% and 22% of all Breast cancer account for about 27% and 22% of all cancers diagnosed among Samoan women in Los cancers diagnosed among Samoan women in Los Angeles County and Hawaii Angeles County and Hawaii ((MishraMishra et al., 1996; et al., 1996; MishraMishra, Luce & , Luce & WilkensWilkens., .,

1996)1996)

Native Hawaiians and Other Pacific Islanders have Native Hawaiians and Other Pacific Islanders have the highest rates of breast cancer mortality in the highest rates of breast cancer mortality in Orange County Orange County (Orange County Affiliate of the Susan G. (Orange County Affiliate of the Susan G. KomenKomen for the Cure)for the Cure)

Samoan National Nurses Association runs the Samoan National Nurses Association runs the only Samoanonly Samoan--specific cancer support group in the specific cancer support group in the Continental U.S.Continental U.S.

Research StudyResearch Study

1 1 ½½ yr retrospective exploration of yr retrospective exploration of social support needs among Samoan social support needs among Samoan breast cancer breast cancer survivorssurvivors and their and their supporterssupportersTheoretical framework: Social Theoretical framework: Social Support TheorySupport TheoryData collection: focus groups, inData collection: focus groups, in--depth interviewsdepth interviewsQualitative data analysesQualitative data analyses

Community Advisory CommitteeCommunity Advisory Committee

Rev. Enoka AlesanaEtimani FonotiMarlene IosiaMarie Ma'oTigi MataaliiVaetagaloa NuaTutasi PeletiSaili SamoaMahonri SapigaEsther TufeleRev. Sepulona Tanuvasa

Sample CharacteristicsSample Characteristics

24 survivors were approached and 24 survivors were approached and 20 agreed to participate (response 20 agreed to participate (response rate=83.3%)rate=83.3%)45 supporters were approached and 45 supporters were approached and 40 agreed to participate (response 40 agreed to participate (response rate=88.9%)rate=88.9%)Support needs included instrumental, Support needs included instrumental, emotional, informational, appraisal emotional, informational, appraisal and spiritualand spiritual

Survivors N (%)Survivors N (%) Supporters N (%)Supporters N (%)Age 30Age 30--49 years49 years

50+ years50+ years4 ( 20.0)4 ( 20.0)

16 ( 80.0)16 ( 80.0)15 ( 37.5)15 ( 37.5)25 ( 62.5)25 ( 62.5)

MarriedMarried 9 ( 45.0)9 ( 45.0) 22( 55.5)22( 55.5)

InsuranceInsuranceNoneNonePrivate/MedicarePrivate/MedicareMedicaidMedicaid

2( 10.0)2( 10.0)16 ( 80.0)16 ( 80.0)2 ( 10.0)2 ( 10.0)

n/an/a

BC StageBC StageEarlyEarlyMiddleMiddleLateLate

14 ( 70.0)14 ( 70.0)4 ( 20.0)4 ( 20.0)2 ( 10.0)2 ( 10.0)

n/an/a

RelationshipRelationshipSpouseSpouseChildChildParent/SiblingParent/SiblingFriend/OtherFriend/Other

n/an/a 6 ( 15.0)6 ( 15.0)10 ( 25.0)10 ( 25.0)13 ( 32.5)13 ( 32.5)11 ( 27.5)11 ( 27.5)

N (%)N (%)

Emotional NeedsEmotional NeedsLoneliness/DepressionLoneliness/DepressionSolitudeSolitudeSexual Intimacy Sexual Intimacy

20 (100.0)20 (100.0)10 ( 50.0)10 ( 50.0)9 ( 45.0)9 ( 45.0)

Instrumental NeedsInstrumental NeedsLogistical (childcare, transport)Logistical (childcare, transport)Navigation/TranslationNavigation/TranslationFinancialFinancial

20 (100.0)20 (100.0)13 ( 65.0)13 ( 65.0)4 ( 20.0)4 ( 20.0)

Informational NeedsInformational NeedsRegarding Regarding dxdx, txt, or , txt, or fupfup decisionsdecisionsAlternative medicineAlternative medicineSexualitySexualityRegarding cancer process Regarding cancer process

18 ( 90.0)18 ( 90.0)12 ( 60.0)12 ( 60.0)8 ( 40.0)8 ( 40.0)4 ( 20.0)4 ( 20.0)

Informational: Informational: SurvivorsSurvivors

““I said oh shoot these people, I donI said oh shoot these people, I don’’t t know why they didnknow why they didn’’t (tell me about my t (tell me about my diagnosis). I said just give me the diagnosis). I said just give me the resultsresults…… if (the doctor) canif (the doctor) can’’t talk to me t talk to me or tell me what the result about, instead or tell me what the result about, instead of giving the results to these nurses and of giving the results to these nurses and then they went and talked about me. then they went and talked about me. And here I am, I didnAnd here I am, I didn’’t know anything t know anything until the janitor told me.until the janitor told me.”” (SV 8)(SV 8)

InstrumentalInstrumental: : SurvivorsSurvivors““When I finally told them, my brother in When I finally told them, my brother in Samoa wanted to come to get me and Samoa wanted to come to get me and take care of me. But I stayed with my take care of me. But I stayed with my sister sister ……. She was the one who took me.. She was the one who took me.””

Instrumental: Instrumental: SupportersSupporters““I introduced her to the clergy inside the I introduced her to the clergy inside the hospital. They came and visited her, so hospital. They came and visited her, so she really felt good about that.she really felt good about that.””

Emotional: Emotional: SurvivorsSurvivors

““I was panicked and I felt like I I was panicked and I felt like I had no hope. I was so afraid, and I had no hope. I was so afraid, and I thought I was going to die. It really thought I was going to die. It really scared me when I found out the scared me when I found out the lump, I knew I was going to die.lump, I knew I was going to die.””(SV 6)(SV 6)

Emotional: Emotional: SupportersSupporters““They were quiet for a while. Especially my They were quiet for a while. Especially my children. Mychildren. My…… husband, toohusband, too…… They just looking They just looking at me and look at each other and just put their at me and look at each other and just put their heads downheads down…… My son over here, he didnMy son over here, he didn’’t say t say anything. I knew he looked kind of lost or anything. I knew he looked kind of lost or puzzled or what happened to you now? Why puzzled or what happened to you now? Why didndidn’’t I do this and do that ort I do this and do that or…… SoSo…… That was That was the reaction I got from my family. They were the reaction I got from my family. They were overwhelmed.overwhelmed.”” (SV 13)(SV 13)

““II’’d say if it were up to me, Id say if it were up to me, I’’d take the cancer d take the cancer and put it in me instead of my mom.and put it in me instead of my mom.””

Emotional: Emotional: SupportersSupportersFor the survivor:For the survivor:

AnxietyAnxietyFearFearPassivePassiveSincere understandingSincere understandingOverwhelmedOverwhelmedFear of reFear of re--occurrenceoccurrence

For themselves:For themselves:DeterminationDeterminationFind emotional support for themselvesFind emotional support for themselvesNeeding to find strengthNeeding to find strengthNeed to get checked / follow up for own healthNeed to get checked / follow up for own health

N (%)N (%)

Appraisal NeedsAppraisal NeedsAbout cancer (risk, death)About cancer (risk, death)As mother/caregiverAs mother/caregiverBody imageBody imageAs survivorAs survivor

13 ( 65.0)13 ( 65.0)20 (100.0)20 (100.0)16 ( 80.0)16 ( 80.0)20 (100.0)20 (100.0)

Spiritual NeedsSpiritual NeedsChurch members (logistical)Church members (logistical)Ministers (prayer)Ministers (prayer)Spiritual doubt/ hopeSpiritual doubt/ hope

17 ( 85.0)17 ( 85.0)12 ( 60.0)12 ( 60.0)20 (100.0)20 (100.0)

SelfSelf--Appraisal Appraisal “I said I can’t do anything right now, myself or anything I can’t. I’m planning my son’s graduate next month, this is April when I seen her. May my son graduate on the 11th

and I have a party for him on the 18th. My granddaughter graduates on the 25th and all that stuff I’m working on it. If I finish with that then I’ll come and see you, so she said oh but you need to, but I said I can’t, so it’s your choice whether I would do it right away or not do it because if I decided not to then I don’t care. That’s what I was telling her. I don’t care if I die with this is what I have, but what I’m planning for my kids that’s most important thing to me, so finally she said okay.” (SV 21)

SelfSelf--AppraisalAppraisal

“I went one day to talk to my doctor, and he said if you want to have an artificial it’s okay. It’s easy. I may get married again, and the man might come and ask why I have one breast so it’s better to have a spare. I asked my brother’s opinion, and he said, if a man wants to marry you he should come to you for you not for your breast. But don’t have that done. That’s why I never had that done. I’m glad I didn’t do it. My socks work just as well….” (SV 18)

Closing Recommendations: Closing Recommendations: SurvivorsSurvivors

Promote preventionPromote preventionShare experiencesShare experiencesGet support from othersGet support from othersShow support to othersShow support to othersWant more informationWant more informationEncourage support Encourage support

groupsgroupsSexual counselingSexual counselingPrayerPrayer

Closing Recommendations:Closing Recommendations:SupportersSupporters

Promote prevention and Promote prevention and early detectionearly detectionShow support to othersShow support to othersSupport for supportersSupport for supportersDiet changes/exerciseDiet changes/exercisePrayerPrayer

Next Steps/ImplicationsNext Steps/Implications

Community disseminationCommunity disseminationContinued data analyses and Continued data analyses and academic disseminationacademic disseminationRefining Refining SNNASNNA’’ss social support groupsocial support groupCreating a churchCreating a church--based navigator based navigator training programtraining program

AcknowledgementsAcknowledgements

Interviewers: Interviewers: SinaSina HowzeHowze, , OfeiraOfeira LutuLutu, , Marina Marina TupuaTupua, Dorothy , Dorothy VaivaoVaivaoCommunity Advisory Committee Community Advisory Committee membersmembersAdditional researchers: Dr. Additional researchers: Dr. KimlinKimlinAshingAshing--GiwaGiwa, Dr. Marjorie Kagawa, Dr. Marjorie Kagawa--Singer, and Ms. Singer, and Ms. AnnalynAnnalyn ValdezValdezFunders: California Breast Cancer Funders: California Breast Cancer Research Program (12BResearch Program (12B--4100/12AB4100/12AB--4101) and the NCI Center to Reduce 4101) and the NCI Center to Reduce Cancer Health Disparities Cancer Health Disparities (U01CA114591)(U01CA114591)