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Needs and Experiences of Samoan Breast Cancer Survivors In Needs and Experiences of Samoan Breast Cancer Survivors in Southern California Sora Park Tanjasiri DrPH, MPH; Sala Mata’alii, RN, MSN, MBA/HCM; Marion Hanneman; and Melanie D. Sabado MPH, BA, BS Abstract between two entities: the Samoan National Nurses Association Objective: Breast cancer rates are increasing among Samoan and other Pacifi c Islander women, yet studies of their social support (SNNA) and the California State University, Fullerton (CSUF). needs are nearly non-existent. The purpose of this paper is to report SNNA is a nonprofi t organization founded in 1996 by a group on the cultural dimensions of social support among Samoan breast of Samoan nurse professionals to promote health education and cancer survivors in Southern California. services, including monthly cancer social support groups, for the Methods: Data for this paper came from a larger one-and-a-half Samoan community. CSUF is a teaching university, and members year study of the social support needs of Samoan breast cancer of both SNNA and CSUF had successfully collaborated on two past survivors and their family and friends. In-depth, retrospective, CBPR efforts, with the principles and activities described in previous qualitative interviews were conducted with a purposeful sample 12,13 of 20 Samoan survivors who were recruited from an existing social publications. In addition, a Community Advisory Board (CAB) support program as well as the general community. comprised of eleven leaders (including ministers, social workers, Results: We documented important informational needs and behav- health professionals, and breast cancer survivors) was convened by iors, social support needs and experiences, and spirituality issues SNNA and met quarterly with community and academic researchers for the Samoan breast cancer survivors. to inform, review, and approve all aspects of the study implementa- Conclusions: Our fi ndings underscore the need for culturally-spe- tion and evaluation. cifi c social support services for Samoans, as well as the necessity of community-based participatory research to defi ne and explore social support and other survivorship needs in this understudied Participants population. Recommendations from the community report-back, Eligibility for study participation included adults 18 years or older, stressed the importance of expanding community Samoan cancer of Samoan descent, and having been diagnosed with breast cancer social support groups through collaborations with Samoan leaders and completed treatment for that cancer. We recruited 20 Samoan and churches. breast cancer survivors using stratifi ed purposeful sampling to include those who participated in SNNA’s monthly social support Introduction group program (n=10), and those who did not. The latter women There are an estimated 9.8 million cancer survivors in the United were found through announcements of the study at outreach activi- States, approximately 2.2 million (22%) of whom are breast cancer ties, through personal contacts (such as family, friends, and church survivors.1 The psychosocial needs of breast cancer patients and members), and through community referrals. SNNA staff approached survivors are well-documented in the literature.2,3 Unfortunately, each woman individually to introduce the purpose of the study, and little research exists on the needs of ethnically diverse women ask for their participation in one face-to-face interview; women who with breast cancer, many of whom have unique fears relating to agreed were scheduled for an interview at a location convenient to family and caregiving, coping, and spirituality.4,5 One signifi cantly the interviewee (usually the woman’s home). unstudied population in cancer survivorship is Samoan Americans. Of the nearly half a million Pacifi c Islanders (PIs) in the United Interview Questions States, Samoans comprise the second largest population after Native The interview guide was developed based upon existing literature Hawaiians. In 2004 there were 60,520 Samoans living in the United and social support theory,14 as well as from consultation with experts States, over 80% of whom resided in California.6,7 Breast cancer in multiethnic breast cancer survivorship.2 Two focus groups (one is the leading site for cancer among Samoan women in California, with SNNA staff and the other with Samoan community leaders) comprising approximately 27% of cancer cases.8 Both national and were conducted with 13 individuals to explore their views about local data suggest that PI breast cancer rates are increasing, and what topics (particularly cultural) should be included in the survivor that the cancers are found at later stages of diagnosis compared interviews. Lastly, the CAB revised and approved the fi nal interview to white women.9,10 Studies of the psychosocial needs of Samoan guide, which included questions about needs during diagnosis, treat- breast cancer survivors, however, are nonexistent. The purpose of ment, and post-treatment, as well as impacts on feelings of sexuality this paper is to describe the fi ndings from an exploratory study of and body image, relationships with signifi cant others, and spiritual- the social support needs and experiences of Samoan breast cancer ity/relationships with God and church. The guides were translated survivors in Southern California. into Samoan by a bilingual nurse at SNNA, reviewed by one CAB member, and discrepancies were discussed and resolved by the two. Methods Instruments and procedures were approved by an IRB at CSUF, and Partnership written informed consent (in English and Samoan) was obtained Data for this paper come from a larger 1.5 year, cross-sectional from each survivor prior to the start of the interview. retrospective study of breast cancer experiences among Samoan survivors, and their family and friends, in Southern California.11 Procedures We engaged in a community-based participatory research effort Four bilingual SNNA staff, each of whom was born in Samoa and HAWAI‘I MEDICAL JOURNAL, NOVEMBER 2011, VOL 70, NO 11, SUPPLEMENT 2 35 had over 20 years of clinical and community experience in the Table 1. Demographic Characteristics of Samoan Survivors (N=20) continental US, were recruited and trained by study research staff n (%) on qualitative interview methods. These training sessions were held over two days for a total of 8 hours, and covered how to put Age participants at ease, why and how to ask open-ended questions and 30-49 years 4 (20.0) probes, how to address issues such as reticence or distress, and how 50+ years 16 (80.0) to obtain informed consent. Each interview was conducted in the Born in Samoa or American Samoa 18 (90.0) language of preference of the survivor, tape recorded, and lasted Marital Status approximately 2 hours. At the conclusion the survivor received a Married 12 (60.0) small monetary honorarium as a token of appreciation. Widowed/Divorced 8 (40.0) Data Management and Analyses Single 0 All interview recordings were transcribed and translated verbatim Highest Level of Education Attained by the study team. A set of transcripts were read by the entire study High school or less 11 (55.0) staff, with major coding schemes developed during a total of fi ve Some college or more 9 (45.0) meetings with study staff and consultants. All transcripts were Health Insurance then analyzed by one researcher using Atlas.ti to identify and code None 2 (10.0) emergent themes, with weekly meetings between the university Private/Medicare 16 (80.0) researchers to refi ne codes and ensure appropriate application to the transcripts. Once preliminary analyses were complete, summaries Medicaid 2 (10.0) were created and shared with study staff and CAB members for Number of Children comments and refl ections. A fi nal report-back session was held with None 5 (25.0) study participants and approximately 30 other community members 1-2 6 (30.0) at a local restaurant in order to obtain further feedback regarding 3+ 9 (45.0) study fi ndings, generate overlooked areas for analysis, and discuss Years Since Diagnosis implications for future services. < 5 years 8 (40.0) Results 6-10 years 6 (30.0) Of the 24 survivors who were invited to participate in this study, 11+ years 6 (30.0) 20 agreed to participate for a response rate of 83.3%. As shown Stage of Breast Cancer in Table 1, survivors were generally born in Samoa, married, and Early (Stage I or II) 14 (70.0) had a high school diploma or less. Some survivors told study staff Middle (Stage III) 4 (20.0) that they felt a responsibility to participate because they belonged Late (Stage IV) 2 (10.0) to a rare group of Samoan survivors and had an important story to tell. Several also shared with us that their life experiences did not Social Support adequately prepare them to deal with their breast cancers, and that Member of SNNA’s cancer support group 10 (50.0) through discussing their emotional experiences they would hope- Not a member of SNNA’s cancer support group 10 (50.0) fully help themselves and others in the future. men to Hawai’i, and it was almost three months after the biopsy Informational Needs and Practices During Diagnosis was done and I still hadn’t received a word from the doctor. And and Treatment the next thing I know, the janitor from [the hospital] told me that Many survivors discussed problems stemming from their perceived I have breast cancer.” A few other survivors shared frustrations lack of education and familiarity with cancer. One survivor whose with getting information from their doctors. In one case, a survivor highest level of education was a high school diploma told her inter- described that after having a negative experience with her doctor viewer, “I didn’t go to school that taught anything about a woman’s during diagnosis in the United States, she ran into a friend who also body.
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