Nalampasan Ko (I ve passed through): Survivorship among Filipinas with breast cancer

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1 Nalampasan Ko (I ve passed through): Survivorship among Filipinas with breast cancer Nancy J. Burke, Ofelia Villero, Alice Cabotaje, Claudia Guerra, Susan Stewart, Rena Pasick, Moon Chen

2 Overview Introduction Study Aims Background Community partnership Methods Findings Conclusions Acknowledgements

3 Introduction Community based participatory research study of breast cancer support outreach for Filipinas Goal: to attract women most in need to breast cancer support resources build upon a pre-existing community partnership develop culturally resonant outreach themes and channels

4 Study Aims 1. Identify beliefs and values related to breast cancer, survivorship, and support; and 2. Create and pre-test culturally resonant outreach themes and channels based on core cultural values

5 Background Filipino population in the US is second only to the Chinese among Asians Over 18% of Asian population in the US (1.9 million in 2000) 1 The majority live in California (49.7%), with the largest concentration in the SF Bay Area (25% of Asian population) 2 More than one in five are LEP, and the largest concentration of LEP Asians in CA live in San Francisco & Oakland 2 15% of Filipinos in CA are uninsured 3 1. Asian American Foundation. New National Demographic Profile Shows Increasing Diversity of Asian Americans (2001) 2. Asian Pacific American Legal Center. The Diverse Face of Asians and Pacific Islanders in California: Asian and Pacific Islander Demographic Profile (2005) ER Brown, SA Lavrred, N Ponce, J Yoon, J Cummings, T Rice. The State of Health Insurance in CA; Findings from the 2005 CA Health Interview Survey. Los Angeles, CA; UCLA Center for Health Policy Research 2007

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8 Copyright 2007 American Cancer Society FIGURE 3 Age-adjusted Cancer Incidence Rates Among Females by Asian American Ethnic Group and Cancer Site, California, 2000 to 2002, California Cancer Registry From McCracken, M. et al. CA Cancer J Clin 2007;57:

9 Community Partnership West Bay Pilipino Multi-Services Center Sinag Tala (Bright Star) Breast Cancer Support Group

10 Community Partnership Pilipino Senior Resource Center

11 Methods Participant observation in breast cancer support groups (n=18) Detailed field notes recorded following each observation session In-depth in-person qualitative interviews Support group facilitators and staff (n=6) Women who had attended Sinag Tala (n=5) Women who had never attended (n=16) Women who attended and stopped (n=3) Family members or caregivers (n=6) Group interviews (2; 3 and 6 participants)

12 Participants Variable N = 39* Age Gender 4 men/35 women Education elementary - college Years in the US 1 to 50 *This number does not include support group facilitators and staff

13 Methods Interviews were conducted in English, Tagalog, or a combination translated and transcribed verbatim transcripts coded by PI transcripts reviewed by all team members content, codes, and themes discussed by all team members in bi-weekly meetings Atlas.ti ethnographic software used to organized coded data Group interviews conducted in Tagalog analysis same as for individual interviews

14 Findings Dimensions of survivorship: Cancer is just one of many trials (so surviving this is just one more thing) Survivorship is not about self, but about family Survivorship means being able to help others Survivorship means being cancer free, having passed through (lampasan)

15 Survivorship Cancer is just one of many trials SP: I am really a survivor. I am able to survive any crisis that comes into my life. I survive all the problems that they throw my way. I am able to survive all the things that they did that they shouldn t have done to me. I: Is cancer like one of those things that you have experienced? SP: Yes, it is just one of those things year old

16 Cancer is just one of many trials Oh yes, there are so many stumbling blocks in your life, including the disease. You know, family problems, job problems, all of that compounded. Yeah! I was able to survive! 53 year old

17 Survivorship is not about self, but about family SP: I had to live because of the kids. And that s the main purpose which I had to live in this world. Because of my kids. Because of my husband? No. Because of my sister or father? No! I have my family. I live, and I will live because of you. 62 year old

18 Survivorship means being able to help others I: What does it mean for you to be a breast cancer survivor? SP: To be strong, to be an advocate of other women to have more close contact with their doctors, to have a check up on their breast, mammogram, and other things their health. Be more perceptive on their health. 48 year old SP: I m thinking about surviving. I m thinking about being able to help my child or even anyone in any way. I know that I can t help financially, but God knows 62 year old

19 Survivorship means being cancer free, having passed through (lampasan) SP: No no, no, no, no, not at all. I haven t passed it yet. I guess when you say you re climbing a hill; I guess I ve passed some of it, but I m not at the top yet. If the doctor tells me I m cancer free, then that s triumph on my end and I can say that I was able to survive, but that doesn t mean to say I am not going to die So there is no guarantee. So as far as being triumphant in this I really can t think I haven t passed it. 50 year old SP: I am almost a survivor. Everything is going to be alright after five years of taking the Arimedex. 79 year old

20 Survivorship means being cancer free, having passed through (lampasan) I: So how would you translate being a breast cancer survivor? SP: You got past it. You were able to pass it and free yourself You were able to do it, but you have to continue taking care of yourself. I: What do you mean when you say get past it? SP: I was able to get past all of the hardship. 61 year old

21 Conclusions The dimensions of survivorship point to the need to take care in the development of outreach themes and program names. Using the term survivor will exclude some women from services as they do not adopt that identity Survivorship is about more than cancer it calls attention to entire lives and challenges faced (immigration, colonial history, discrimination, violence, family expectations) the embodiment of these experiences is intricately linked to experiences of cancer and conceptions of surviving or passing through

22 Next Steps Build upon current findings to question how support services should be designed and delivered ( Filipina Breast Cancer Support: What model is meaningful? Susan G. Komen Breast Cancer Disparities Grant ) Disseminate findings in community meetings, via the Filipino Press Club, scientific conferences, and peer reviewed manuscripts

23 Acknowledgements West Bay Pilipino Multi-Services Center Pilipino Senior Resource Center Participants and their family members Grant Number U01CA from the Center to Reduce Cancer Health Disparities/NCI and the Hellman Family Foundation. Presentation contents are solely the responsibility of the authors and do not necessarily represent the official views of the NCI

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