PMCCPMCCPMCC

Search tips
Search criteria 

Advanced

 
Logo of nihpaAbout Author manuscriptsSubmit a manuscriptNIH Public Access; Author Manuscript; Accepted for publication in peer reviewed journal;
 
Qual Health Res. Author manuscript; available in PMC Jun 6, 2012.
Published in final edited form as:
PMCID: PMC3368502
NIHMSID: NIHMS380551
Passing Through: Meanings of Survivorship and Support Among Filipinas With Breast Cancer
Nancy J. Burke,1 Ofelia Villero,1 and Claudia Guerra1
1University of California, San Francisco, California, USA
Corresponding Author: Nancy J. Burke, Department of Anthropology, History and Social Medicine, and Helen Diller Family Comprehensive Cancer Center, University of California, San Francisco, 1450 3rd St., MC0128, PO Box 589001, San Francisco, CA 94158-9001, USA, nburke/at/cc.ucsf.edu
Breast cancer among Filipinas in the United States is a major but largely neglected cancer disparity. In 2004, a community– university partnership resulted in the first Filipina breast cancer support group in the San Francisco Bay Area. Building on this partnership, we explored the social and cultural contexts of Filipinas’ experiences with breast cancer to inform development of culturally appropriate and sustainable support services and outreach. We utilized multiple qualitative methods (participant observation, individual and small group in-depth qualitative interviews) to identify meanings of survivorship and support. Interviews and observations revealed the influences of social context and immigration experiences on women’s understandings of cancer, what “surviving” cancer means, and what it means to take care of someone with breast cancer (or be taken care of). Our findings highlight the importance of a transnational perspective for the study of immigrant women’s experiences of cancer and survivorship.
Keywords: cancer, breast, immigrants/migrants, social support, survivorship
Breast cancer among Filipina American women is a major but largely neglected cancer disparity. First, though not as highly visible as other Asian subgroups, the Filipina population in the United States is large, second among Asians only to the Chinese. Second, Filipinas have higher rates of breast cancer incidence than most other Asian subgroups (Chockburn & Deapen, 2004; Keegan, Gomez, Clarke, Chan, & Glaser, 2007; McCracken et al., 2007). Third, there is a dearth of resources for and data regarding Filipinas with breast cancer. Breast cancer is the most commonly diagnosed type of cancer among Filipinas in the United States, and the leading cause of cancer death (Maxwell, Bastani, Vida, & Warda, 2003). Compared with White women, Filipinas are more likely to be diagnosed at later stages and are more likely to die from the disease (Maxwell et al.). Filipinas have much higher rates of breast cancer incidence than most other Asian subgroups (second only to Japanese women), and the highest rates of mortality among Asian subgroups in California (Chockburn & Deapen; Keegan et al.; McCracken et al.). Reporting findings from a 4-year community-based participatory research study, we seek to contribute to an increased understanding of breast cancer support disparities among Filipina immigrants in the United States.
Filipinos are among the earliest U. S. immigrants, having arrived in the United States in the mid-1700s (Cordova, 1983). This was followed by four waves of immigration, the largest taking place after the 1965 Immigration Act (Hart-Cellar, 1965), which abolished national origin quotas and permitted family reunification and occupational visas. The passage of this Act permitted the migration of educated, professional (e.g., nurses, physicians, other health care professionals), largely English-speaking Filipinos. Since 1965, Filipinos have made up the highest number of Asian immigrants admitted annually in the United States (Vergara, 2008), constituting more than 18% of the Asian population (1.9 million in 2000; United States Census Bureau, 2001). The majority of U.S. Filipinos live in California (49.7%), with the largest concentration in the San Francisco Bay Area, where they make up 25% of the Asian population (Vergara).
Filipinos travel to the United States from an archipelago of 7,107 islands with more than 60 cultural groups and where 80 to 100 different languages are spoken. Cultural studies scholars and social scientists have argued that the emergence of ethnicity and racialized identity among Filipinos in the United States is distinct from that of other Asian immigrants. They attribute this distinction to the colonial and neocolonial presence of U.S. institutions and representatives in the Philippines since at least the late 1800s, and Filipinos’ particular history of immigration to the United States (Espiritu, 2001, 2002; Rafael, 1997; Vergara, 2008). The longstanding presence of the United States in the Philippines infers familiarity with U.S. lifestyles, cultural practices, and consumption patterns (Espiritu, 2002). Migration scholars argue that this familiarity affords somewhat smoother integration when compared with other Asian subgroups (Espiritu, 2003). Nevertheless, economic, language, and cultural barriers to health promotion programs and practices impede access to cancer care and support services (Ko, Sadler, Ryujin, & Dong, 2003). Understanding this migration and colonial history, and its relevance to daily lives and experiences of health and illness (Espiritu, 2001; Strobel, 2001), is a critical component of community-based health programs, survivorship services, and culturally appropriate education and outreach focused on Filipinos in the United States (Kagawa-Singer, 1998; Marín et al., 1994; Smedley, Stith, & Nelson, 2004).
Despite high rates of breast cancer incidence and mortality, very little is known about how cancer is understood and treated among Filipino immigrants, and how they manage survivorship. Although the literature on support groups for women of other ethnic groups is growing (Doyle, 2008; Kaiser, 2008), support group services are almost nonexistent in the Filipino community, and research evaluating their effectiveness in providing emotional support and easing the stress of daily life apparently nonexistent. Recent research has elucidated that autonomous individual decision making, a fundamental feature of mainstream Euro-American culture, is an elemental component of the dominant model of cancer survivorship in the United States (Mathews, 2009). Sports and military metaphors are used in this model to portray the “fighting spirit” and “unrelenting optimism” as the ideal mind set for recovery (Coreil, Wilke, & Pintado, 2004; Mathews, 2000). Such a focus reflects a mainstream “individualistic” outlook, which is distinct from that of cultural groups whose basic understanding of and approach to illness and coping draw on values of harmony (with others, nature, forces beyond one’s control), as well as diminution of the individual in the context of family and community (Becker, 2003; Pe-Pua & Protacio-Marcelino, 2000).
Anthropologist Holly Mathews’ research with African American breast cancer survivors shows the importance of cultural variations on manifestations of survivorship identity (Mathews, 2000, 2009). The women she interviewed were uncomfortable with the individualistic model of breast cancer survivorship promoted by their hospital-sponsored support group—expressed in militaristic and sports metaphors—yet felt pressure to conform to this dominant identity. In response, these women formed their own support group and negotiated a different cultural consensus regarding breast cancer. Rather than focusing on war metaphors, their group accepted feelings of doubt and pessimism, and emphasized quality of life, spiritual values, and family relationships. Such findings illustrate variations in the configurations and meanings of “support” and “survivorship,” as well as the existence of preexisting acceptable mechanisms for the provision of support (e.g., via social connections and networks). We designed our study to contribute to the elucidation of the meanings Filipino women attribute to survivorship and support. As a Filipina social worker serving Filipino elders in San Francisco told us,
We have our own different ways of support groups. One of them, you know, is the mahjong [Chinese table game], or you know, it’s the social groups. And even though a lot of discussion may be teasing or maybe joking, they learn a lot from each other that way.
In this article we report findings from a 4-year community-based participatory research study of breast cancer support disparities among Filipinas in the San Francisco Bay Area. We partnered with two community-based organizations in this study (West Bay Pilipino Multi-Services Center and Pilipino Senior Resource Center). Our collaboration began in 2004 when West Bay, the University of California, San Francisco (UCSF) Comprehensive Cancer Center, and the San Francisco General Hospital (SFGH) Avon Breast Care Program joined forces to establish the first Filipina breast cancer support group under the name Sinag Tala (Bright Star) in the San Francisco Bay Area. In the course of the first year, it became apparent that group attendance was uneven, and West Bay was concerned that not all Filipinas with breast cancer who could benefit from the group were being reached. This concern served as the basis for a partnership that has continued through a change in West Bay leadership, disbanding of the Sinag Tala breast cancer support group in 2006, and resurgence of the group in a neighboring organization (Pilipino Senior Resource Center) under the name Filipina Breast Cancer Support Program.
Because we wanted to understand the meanings that cancer, survivorship, and support held for Filipinas who had experienced breast cancer, we focused our ethnographic study on the sociocultural contexts that shaped participants’ day-to-day experiences and which directly and indirectly affected their health and behavior (Burke, Joseph, Pasick, & Barker, 2009; Pasick & Burke, 2008). These contexts included historical, political, and legal structures and processes such as migration experiences, racism, and colonialism (Rafael, 1997; Strobel, 2001); organizations and institutions, such as schools and health care clinics; as well as individual and personal trajectories, including family, workplace, community, church, and interpersonal relationships (Burke et al., 2009). In this report we focus on findings related to meanings of survivorship and support in this group of women, with the intent that such meanings serve as the basis for the development of culturally resonant and sustainable support services and outreach.
Ethnographic research on breast cancer support groups can document both consensus and contested domains within group culture (Coreil et al., 2004), the meanings that participation in the group holds for women, and the existence of other informal support mechanisms through which survivorship needs might be met. We utilized the qualitative methods of participant observation, in-depth individual interviews, and small group interviews with breast cancer survivors and their families to answer our research questions. Participant observation includes observation and natural conversations through which the researcher becomes involved in the daily lives of the people and community under study, observing and talking with them as she or he learns from them their view of reality (Goncalves de Moura, van der Meer Sanchez, & Noto, 2010). Participant observation provides the researcher with an intuitive as well as intellectual grasp of the way ideas are organized and prioritized, how people relate to one another, and the ways in which social and physical boundaries are defined (LeCompte, 1999).
We conducted participant observation in 63 breast cancer support groups. This number includes both Filipina-only (West Bay and Pilipino Senior Resource Center; n = 42) and mixed-ethnicity support groups (n = 21) in which Filipinas participated. Mixed-ethnicity groups included a public hospital-sponsored group that drew participants from a cross section of San Francisco’s diverse ethnic and socioeconomic backgrounds, a group held at a private hospital in a heavily Filipino populated city that included primarily White and Filipino women, and various activity groups (e.g., knitting, crafts) open to women of any ethnicity. Detailed field notes were recorded following each participant observation session, recording what happened, who was present, what was said, and how this related to what we were learning in our interviews and in previous observations (Nilvarangkul, McCann, Rungreangkulkij, & Wongprom, 2011). Differences between the Filipina-only and mixed-ethnicity groups will be addressed in a forthcoming publication.
We conducted in-depth qualitative interviews with support group facilitators and staff (n = 6), persons who had attended a support group (n = 27; 21 women, 6 male family members), women who had never attended (n = 27), and women who attended and stopped (n = 3). Our sample was purposive (Bernard & Ryan, 2009) and included women who self-identified as Filipina; had a diagnosis of breast cancer (any stage); and had participated in a breast cancer support group, had not participated in a breast cancer support group, or had participated and stopped. We also interviewed family members and friends about their experiences with the participant’s breast cancer diagnosis, experiences with support groups, and support needs. In addition, we conducted two small group interviews (n = 3, n = 6), in which findings from the participant observation and individual interviews were discussed. Sixty-five women and six men participated in our study between 2005 and 2009. They ranged in age from 38 to 88 years, and had spent anywhere from 1 to 50 years in the United States. Education level ranged from elementary to college.
Individual and group interviews were conducted in either English (n = 9) or Tagalog (n = 62; preference of participant) and lasted from 1 to 2 hours (Abdulrahim & Ajrouch, 2010; Woodgate & Leach, 2010). Often conversations continued long after the tape recorder had been turned off, while we shared lunch and tea with our participants in their homes and comfortable community settings. All interviews were transcribed (Tagalog interviews were translated into English) and imported into Atlas.ti qualitative computer software (Atlas.ti Scientific Software Development, 2010) to facilitate analysis and the organization of data. Our interviews followed a life history format (Goldman et al., 2003) and were structured using open-ended questions to allow us to delve deeply into a subject and explore new topics and issues as they were generated by participants’ responses. We developed a list of questions that reflected study domains and that would provide insight into the influence of social and cultural context on these domains. The domains or topic areas were diagnosis experience; experiences with illness and/or cancer across the lifespan (within the family); coping, including use of complementary and alternative medicine and spiritual practices/religiosity; support resources; experiences of group activities and organizations in the Philippines; and experiences with breast cancer support group services in the United States. In addition to questions, we developed probes to support the narrative and encourage increasing depth of topic exploration (Bernard, 2006). For example, when asking about spiritual practices/religiosity, we explored issues directly related to behaviors, as well as how these behaviors (e.g., prayers, church attendance, novenas, pilgrimages) were situated in the person’s life and within her or his family and community. Probes also explored how these behaviors related to participants’ experiences of breast cancer diagnosis, treatment, and posttreatment coping.
Our analysis process was iterative and participatory, involving all members of the research team in regular discussion of the data. Following each interview, team members who conducted the interview reviewed transcripts and postinterview field notes and added contextual comments onto each transcript. In monthly team meetings, the research team engaged in immersion/crystallization analysis (Borkan, 1999) through which we transformed raw study data (interviews and field notes) into salient themes and categories. In addition to these discussions, two team members reread each transcript, assigned thematic codes, and discussed emerging themes and sub-themes. When discrepancies in coding arose, discussions continued until consensus was reached. The UCSF Committee on Human Research reviewed and approved all research activities. All participants provided written informed consent prior to participation, and anonymity was assured to each participant. All individual names included in the article are pseudonyms.
The combination of observations and informal conversations occurring in and around support group meetings (participant observation), interviews with support group facilitators and staff, and interviews with Filipinas who had experienced breast cancer and their family members and friends illustrated the influence of social context on women’s understandings of cancer, what “surviving” or “passing through” cancer means, and what it means to take care of someone with breast cancer (or be taken care of). These understandings stem from a dynamic mixture of past and present, and from experiences in and connections with the Philippines and the United States. We identified two overarching themes: first, dimensions of survivorship, with four subthemes; and second, dimensions of support, with five subthemes. The subthemes under dimensions of survivorship were (a) cancer is one of many trials; (b) survivorship is not about self, but about family; (c) survivorship means rebirth, a second chance; and (d) survivorship means being cancer-free, having “passed through” (lampasan). The dimensions of support subthemes were (a) differing definitions of caregiving, (b) family support dynamics, (c) patients as caregivers, (d) transnational aspects of support, and (e) spiritual and religious support.
Survivorship and support were complex and multifaceted concepts for our participants. In discussions of these topics, participants recounted immigration experiences, explored cultural and linguistic concepts, discussed their expectations of family members, and described transnational family roles. The subthemes listed are our attempt to organize these components in a fashion amenable to use in program development. However, in life history interviews these components or subthemes were often heavily intertwined and mutually influential.
Dimensions of Survivorship
Cancer is one of many trials
Women told us of the many struggles they faced as providers for family in the United States and those left in the Philippines, as single mothers, as single women navigating the complex immigration process (whether legally or not) between the Philippines and the United States, and as women with breast cancer. Imee, who came to the United States as a single mother more than 20 years previously, told us,
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.
After detailing her struggles raising her children in one of the roughest areas of San Francisco, we asked, “Is cancer like one of those things that you’ve experienced?” “Yes,” she responded, “it is just one of those things.” Amihan noted her self-reliance, the fact that she had survived all the challenges in her life—urban poverty, single parenthood, and troubling relationships—on her own. Jovelyn, a small business owner, summarized the sentiment behind this understanding of cancer in the context of other life experiences when she said, “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!” Throughout narratives shared in interviews, women normalized the experiences of cancer diagnosis and treatment by listing these alongside the many challenging experiences they had had throughout lives spanning from the Philippines to the United States, and back.
Survivorship is not about self, but about family
Other women emphasized the importance of surviving for those important to them in their lives, mainly their children. Melaya, who had struggled to take care of her children while working two jobs after her husband left her, told us, “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.” Imelda, a community activist, said, “I think my children are the ones giving me hope, and they are the ones that are giving me hope to be able to get over this, because they think I will be gone soon, sooner than expected.” We expected to hear this emphasis on family, as we had hypothesized that the relational nature of Filipino concepts of self would imply the importance of family and friends (McLaughlin & Braun, 1998; Pasick et al., 2009; Uchida, Kitayama, Mesquita, Reyes, & Morling, 2008). What was unanticipated was that women who were single mothers talked exclusively about their children—not husbands or friends—because they had sacrificed so much to give their children what they needed, often with somewhat sporadic support. Many of these women were also sending remittances to extended family in the Philippines.
Survivorship is rebirth, a second chance
In addition to concern for family, several women noted the opportunity having had cancer had provided them to advocate for others and to change the way they were living. Dalisay, a former accountant with two children in college, said,
It’s like a rebirth. Like I am born again. Like it is a sign. Take care of yourself, eat the right food, exercise and change your life for the better, depending on how you want to change. Like you want to downsize your lifestyle. Be simple. Be loving and caring to yourself and your family.
Belen, who had come to the United States with her husband more than 10 years previously, noted her change in outlook. She stated, “What cancer took away from me was my hopefulness. When I was diagnosed with cancer my perspective changed. My aspirations in life changed. I focused more on relationships, with myself. It was a self-realization. You look at life differently.”
Survivorship means being cancer-free, having “passed through” (lampasan)
Women talked of their experiences with cancer as a continual and connective process or journey, one of the many they had dealt with in their lives. Like other journeys (or trials), this was one they experienced with others, being helped by them and carrying those “younger” in the illness along behind them. Even though they were told in support groups and clinic appointments that they were “survivors” because they were living with cancer, many women objected to this category. Imelda stated,
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. I haven’t passed it.
Chesa, very involved in her church group, answered our question, “So how would you translate being a breast cancer survivor?” with “You got past it. You were able to pass it and free yourself. You were able to do it.” When asked, “What do you mean when you say ‘get past it’?” she responded, “I was able to get past all of the hardship.” The notion of “passing,” translated from the Tagalog word lampasan, implies a process, a time trajectory, not a before and after (as in before diagnosis you had one identity and after you became a survivor). This before/after logic, present in many narratives of survivorship (Mathews, 2009), does not allow for the multiple identities women experience as they move through the diagnosis, treatment, and posttreatment processes. Such movement involves shifts in subjectivity as women learn the languages of the clinic, experience the world of cancer services, are offered resources for “survivors,” and undergo bodily transformations in response to treatment (Adams, 2010; Hyde, Nee, Howlett, Drennan, & Butler, 2010). The notion of lampasan allows for the interconnectedness of all hardships these women had experienced, including cancer, into the concept of survivorship. It also allows for the interconnectedness of selves on this journey: family members in the United States and the Philippines, other women experiencing cancer, and support group members—helping each other pass through as they share experiences (Hinton & Earnest, 2010).
Dimensions of Support
Differing definitions of “caregiving”
This sharing of experiences, especially the ability to help others through telling one’s own story, was a strong motivator for women in our study to participate in support groups. Few went to a group wanting to receive support. Instead, offering their stories to others bolstered their own spirits. When exploring this concept of support in our interviews, women talked about individuals who drove them to appointments, helped with medications, and helped with shopping. However, when we asked about a “caregiver,” the majority of women denied having one; they reported taking care of themselves and not really relying on anyone. When we pointed out that they had mentioned a daughter, cousin, or spouse who had helped them, they would respond that yes, this person had helped, but she or he was not a caregiver. “Caregiver” had very specific meanings for the women in this study, meanings linked to expectations that were acceptable in the Philippines, but which had changed in the United States. In the Philippines, a caregiver was one who was always there, and one who sacrificed his or her own health for the person for whom he or she was caring (one of the women we interviewed who did identify as being a caregiver shared that she suffered a stroke while taking care of her mother in the Philippines). The women said that in the United States, however, they could not expect that level of commitment because their children worked and had other obligations. They did receive support in the form of practical help and finances, but that did not equate with “caregiving” in their estimation.
Family support dynamics
When discussing how they managed the special needs of patients during treatment and postsurgery, it became apparent that families juggled supporting patients. Sometimes husbands were amazingly supportive; other times they left their wives. Children took on adult roles, and daughters cared lovingly for their mothers while their grades suffered (and mothers cried while recounting these changes). Siblings helped each other, and nieces and nephews gave massages to ease discomfort. Different family members provided different forms of support: practical, moral, emotional, financial. These differences were evident in how Carmela, the daughter of one of the participants, described her father’s approach to caring for her mother with cancer:
He was supportive in the nonemotional way. He wasn’t holding her hand and saying, “Let’s go to your appointment; you’ll be fine.” You could tell he was devastated. He was worried for her. After the mastectomy, she had to drain the fluids and he drained them for her. He devised a way so that she can shower. He helped her with the meds [medications]. He did the physical things that she can’t do, but emotionally, they were fighting. So the emotional part he wasn’t there, but the physical, the practical parts, he was there the whole time, the whole way through. He didn’t turn away.
It was Carmela’s responsibility to provide emotional support for her mother.
Patients as caregivers
Several women we interviewed worked as caregivers either at the time of diagnosis or during and after treatment. Such work was physically and emotionally taxing, especially when undergoing treatment (Kong, Deatrick, & Evans, 2010). Analyn, who had been working as a caregiver for more than 10 years, shared her dependence on her patient: “I pray that she doesn’t die soon, because I don’t know where I’m going to live after she’s gone. I don’t want to live with my children.” Luz migrated to the United States to care for her mother until she died. Afterward, she began working as a caregiver to support herself and her 10-year-old son. She felt that an injury she sustained while caregiving caused her breast cancer (when trying to keep a large patient from falling, he knocked her in the chest). Other women took the opportunity of their own experience with cancer to provide care and support for others. Talking of a friend with cancer, Chesa told us, “We were the ones that took care of her. Me and my other neighbors. We have a prayer group, and we would bring her food. If someone had time to take [her] to her chemo [chemotherapy], we would.”
Transnational aspects of support
Many of the women we interviewed felt a great sense of responsibility for their family living in the Philippines. Several participants who worked as caregivers used their income to support family in the Philippines, sending remittances regularly. This was often a strain, as Nenette, who had retired in the Philippines to come to the United States to work as a caregiver, told us:
I wanted to help my children out. So now that I’m here my children in the Philippines always ask me for help. They want me to send money every month. The moment I give them money, they ask for more.
Others felt guilty about becoming ill, because this impacted their ability to support family at home, and they relied on phone calls and long-distance prayers for support (Yoo, Aviv, Levine, Ewing, & Au, 2010). Mirasol, a single mother, told us,
When they [family in the Philippines] found out they got scared, because I am by myself here and I have my child. I just told them to pray for me, and told them to excuse me because they depend on me.
Spiritual and religious support
Many of the women we interviewed spoke of relying on God, on prayer, and on prayer groups for support. Mirasol told us, “I ask God, because I don’t have anybody. I don’t have my husband. My kids are little. What can the kids do for me? So I ask God, ‘You have to help me.’” Imelda said, “I became more religious during that time I was going through it. Somehow, I think it’s a natural thing that you ask for certain guidelines and blessings.” Marikit pointed to the need for prayer in combination with active engagement in a spiritual community and one’s own health care:
Oh yes, everything is about God. That is why we pray to God. We ask for help. We ask Him to help us reach things we cannot. Of course, before you pray, you must do something, also. If you pray and then you don’t do anything, then it doesn’t have any effect.
Some of the things the women did included devotions in the United States and in the Philippines to Mary and other saints. Others prayed regularly at church, attended mass, and attended church groups. Several mentioned regular attendance at novenas, where they found support from the others praying together. Divina, just out of treatment, told us, “It is nice to know that they are praying for me. A good feeling that other people care for you.”
Breast cancer support groups have been used extensively, and a substantial body of research on their benefits and mechanisms has evolved; however, little is known regarding the role of culture in survivorship or the provision of support. The number of cancer survivors in the United States increased from 9.8 million in 2001 to 11.7 million in 2007 (Centers for Disease Control and Prevention, 2011), a substantial increase from the 3 million people with a cancer history alive in 1971 (Reuben, 2004). Understanding and addressing the unmet needs of survivors have emerged at the forefront of public health policy, as reflected by the National Cancer Institute’s (NCI’s) designation of survivorship as a priority for research. This issue is considered integral to the NCI’s stated goal to eliminate suffering and death from cancer by 2015 (Von Eschenbach, 2003). The 2003–2004 President’s Cancer Panel Report, “Living beyond cancer: Finding a new balance,” detailed cancer survivorship challenges and noted that they were magnified among survivors from under-served populations. The Panel recommended that support group referrals be included in all follow-up care (Reuben). These findings were supported by the Institute of Medicine report on survivorship (Hewitt & Ganz, 2006).
All breast cancer survivors experience uncertainty because of unpredictable disease prognosis; unclear etiology; threat of recurrence; difficulty in predicting long-term effects of current treatment regimens; and ever-present awareness of disease progression, suffering, and death (Doyle, 2008; Kaiser, 2008; Mast, 1998; Sammarco, 2003). Thus, survivorship issues inherently involve fear and uncertainty about treatment outcomes, reduced functional status, disease recurrence, future well-being and independence, and reduced social resources (Cameron & Horsburgh, 1998; Sammarco; Silliman, Balducci, Goodwin, Holmes, & Leventhal, 1993). Support groups have been shown to help in ameliorating these challenges (Docherty, 2004) through information and emotional and social support (Coreil et al., 2004; Edelman, Bell, & Kidman, 1999; Edelman, Craig, & Kidman, 2000; Montazeri et al., 2001; Samarel et al., 1998; Samarel, Fawcett, & Tulman, 1997). In a study of perceived social support, uncertainty, and quality of life in older women with breast cancer, Sammarco found a significant positive correlation between perceived social support and total quality of life (Sammarco). Coreil and colleagues found that participation enhanced survivors’ sense of control and security in an otherwise unpredictable situation in their ethnographic study of breast cancer support groups. However, the majority of this research was conducted with White women, because support group participants tend to be young, White, unmarried women (Kessler, Mickelson, & Shanyang Zhao, 1997). In a recent study of survivorship identity, for example, Kaiser reported that despite positive meanings attached to the concept of “survivorship,” many women altered or rejected it for a variety of reasons. Thirty-six of the 39 participants in Kaiser’s study were White. There is little literature on the embrace of the survivorship concept by ethnicity (Chung, Cimprich, Janz, & Mills-Wisneski, 2009). Lacking also are studies of the breast cancer experience of Asians generally, or Filipinas specifically, and the relationship that these experiences have to reliance on social support networks (Tam Ashing, Padilla, Tejero, & Kagawa-Singer, 2003).
Social and cultural contexts of support group participation and survivorship experiences are largely absent in a literature focused more on physical and social concerns of breast cancer patients. Absent in this literature are the caregiving roles of breast cancer survivors, the transnational nature of support and responsibilities, the impact of migration on survivorship and the illness experience, and differing understandings and meanings of survivorship and support. In essence, what is missing is the need to attend to the context of immigration and poverty when considering breast cancer support disparities.
The data reported in this study illustrate the need for support in the Filipina community and the importance of understanding support dynamics, as well as meanings of “survivorship” when designing support programs. The dimensions of survivorship outlined point to the need to be careful in the development of outreach themes and program names. Using the term “survivor” will exclude some women who do not see themselves as survivors, as having “passed through.” In addition, our inquiry into meanings of survivorship shows that for these women, survivorship is about more than cancer. It calls attention to entire lives and challenges faced (e.g., immigration, discrimination, violence, family expectations). The embodiment of these experiences is intricately linked to experiences of cancer and conceptualizations of “surviving” or “passing through,” and must be accounted for in program and outreach development. In addition, differing conceptualizations of support, what it means to be a “caregiver,” and participants’ own positionality as caregivers point to the importance of historical and social contexts of illness and recovery experiences. Specifically, immigration experiences and continual ties to—and responsibilities in—the Philippines emerged as significant influences. A transnational perspective, therefore, is essential for the study of immigrant women’s experiences of cancer and survivorship, and for the development of appropriate and sustainable support services.
Acknowledgments
We thank the San Francisco General Hospital/Avon Foundation Comprehensive Breast Care Program for its support of the Pilipino Senior Resource Center’s (PSRC) Filipina Breast Cancer Support Program. We thank Esther Macaraeg and all PSRC staff and support group members for their continuing partnership. We also thank West Bay Pilipino Multi-Services Center for their role in this study, and Alice Cabotaje for her contributions as fieldworker and interviewer.
Funding
The authors disclosed receipt of the following financial support for the research and/or authorship of this article: Support was received from the Asian American Network for Cancer Awareness, Research and Training CNP (Grant Number U01CA114640) from the Center to Reduce Cancer Health Disparities/NCI; Susan G. Komen Foundation Breast Cancer Disparities Program; and the UCSF Hellman Family Foundation Award for Early Career Investigators.
Biographies
Nancy J. Burke, PhD, is a medical anthropologist and associate professor in the Department of Anthropology, History and Social Medicine and the Hellen Diller Family Comprehensive Cancer Center at the University of California, San Francisco, California, USA.
Ofelia Villero, PhD, is a postdoctoral scholar in the Department of Anthropology, History and Social Medicine and the Helen Diller Family Comprehensive Cancer Center, University of California, San Francisco, California, USA.
Claudia Guerra, MSW, is a research associate in the Helen Diller Family Comprehensive Cancer Center, University of California, San Francisco, California, USA.
Footnotes
Declaration of Conflicting Interests
The authors declared no conflicts of interest with respect to the authorship and/or publication of this article.
  • Abdulrahim S, Ajrouch K. Social and cultural meanings of self-rated health: Arab immigrants in the United States. Qualitative Health Research. 2010;20:1229–1240. doi: 10.1177/1049732310371104. [PubMed] [Cross Ref]
  • Adams J. Motivational narratives and assessments of the body after cosmetic surgery. Qualitative Health Research. 2010;20:755–767. doi: 10.1177/1049732310362984. [PubMed] [Cross Ref]
  • Atlas.ti Scientific Software Development GmbH. Atlas.ti. (Version 6) [Computer software] Berlin Germany: 2010.
  • Becker G. Cultural expressions of bodily awareness among chronically ill Filipino Americans. Annals of Family Medicine. 2003;1(2):113–118. [PubMed]
  • Bernard HR. Research methods in anthropology: Qualitative and quantitative approaches. 4. Walnut Creek, CA: AltaMira Press; 2006.
  • Bernard HR, Ryan GW. Analyzing qualitative data: Systematic approaches. Thousand Oaks, CA: Sage; 2009.
  • Borkan J. Immersion/crystallization. In: Crabtree BF, Miller DWL, editors. Doing qualitative research. 2. Thousand Oaks, CA: Sage; 1999. pp. 179–194.
  • Burke NJ, Joseph G, Pasick RJ, Barker JC. Theorizing social context: Rethinking behavioral theory. Health Education & Behavior. 2009;36(Suppl):55S–70S. doi: 10.1177/1090198109335338. [PMC free article] [PubMed] [Cross Ref]
  • Cameron S, Horsburgh ME. Comparing issues faced by younger and older women with breast cancer. Canadian Oncology Nursing Journal. 1998;8(1):40–44. [PubMed]
  • Centers for Disease Control and Prevention. Cancer Survivors—United States, 2007. Publication No 60(09); 269-272. 2011 Retrieved from CDC Web site at http://www.cdc.gov/mmwr/preview/mmwrhtml/mm6009a1.htm?s_cid=mm6009a1_w.
  • Chockburn M, Deapen D. Cancer incidence and mortality in California: Trends by race/ethnicity 1988–2001. Los Angeles: University of Southern California; 2004.
  • Chung LK, Cimprich B, Janz NK, Mills-Wisneski SM. Breast cancer survivorship program: Testing for cross-cultural relevance. Cancer Nursing. 2009;32(3):236–245. doi: 10.1097/NCC.0b013e318196c67b. [PubMed] [Cross Ref]
  • Cordova F. Filipinos: Forgotten Asian Americans. 1. Dubuque, IA: Kendall/Hunt; 1983.
  • Coreil J, Wilke J, Pintado I. Cultural models of illness and recovery in breast cancer support groups. Qualitative Health Research. 2004;14:905–923. doi: 10.1177/1049732304266656. [PubMed] [Cross Ref]
  • Docherty A. Experience, functions and benefits of a cancer support group. Patient Education and Counseling. 2004;55(1):87–93. doi: 10.1016/j.pec.2003.08.002. [PubMed] [Cross Ref]
  • Doyle N. Cancer survivorship: Evolutionary concept analysis. Journal of Advanced Nursing. 2008;62(4):499–509. doi: 10.1111/j.1365-2648.2008.04617.x. [PubMed] [Cross Ref]
  • Edelman S, Bell D, Kidman A. Group CBT versus supportive therapy with patients who have primary breast cancer. Journal of Cognitive Psychotherapy. 1999;13:189–202.
  • Edelman S, Craig A, Kidman A. Group interventions with cancer patients: Efficacy of psychoeducational versus supportive groups. Journal of Psychosocial Oncology. 2000;18(3):67–85.
  • Espiritu YL. We don’t sleep around like White girls do. Signs. 2001;26(2):415–440.
  • Espiritu YL. The intersection of race, ethnicity, and class: The multiple identities of second-generation Filipinos. In: Min PG, editor. The second generation: Ethnic identity among Asian Americans. Walnut Creek, CA: AltaMira Press; 2002. pp. 19–52.
  • Espiritu YL. Home bound: Filipino American lives across cultures, communities, and countries. Berkeley, CA: University of California Press; 2003.
  • Goldman R, Hunt MK, Allen JD, Hauser S, Emmons K, Maeda M, Sorensen G. The life history interview method: Applications to intervention development. Health Education & Behavior. 2003;30(5):564–581. doi: 10.1177/1090198103254393. [PubMed] [Cross Ref]
  • Goncalves de Moura Y, van der Meer Sanchez Z, Noto AR. Diversity of contexts in drug use among street adolescents. Qualitative Health Research. 2010;20:1241–1253. doi: 10.1177/1049732310370967. [PubMed] [Cross Ref]
  • Hart-Cellar. US immigration legislation: 1965 Immigration and Nationality Act (Hart-Cellar Act) 1965 Retrieved from http://library.uwb.edu/guides/USimmigration/1965_immigration_and_nationality_act.html.
  • Hewitt M, Ganz PA. From cancer patient to cancer survivor—Lost in transition: An American Society of Clinical Oncology and Institute of Medicine Symposium. 1. Washington, DC: National Academies Press; 2006.
  • Hinton R, Earnest J. Stressors, coping, and social support among women in Papua New Guinea. Qualitative Health Research. 2010;20:224–238. doi: 10.1177/1049732309357572. [PubMed] [Cross Ref]
  • Hyde A, Nee J, Howlett E, Drennan J, Butler M. Menopause narratives: The interplay of women’s embodied experiences with biomedical discourses. Qualitative Health Research. 2010;20:805–815. doi: 10.1177/1049732310363126. [PubMed] [Cross Ref]
  • Kagawa-Singer M. Cancer and Asian American cultures. Asian American and Pacific Islander Journal of Health. 1998;6(2):383–399. [PubMed]
  • Kaiser K. The meaning of the survivor identity for women with breast cancer. Social Science & Medicine. 2008;67(1):79–87. doi: 10.1016/j.socscimed.2008.03.036. [PMC free article] [PubMed] [Cross Ref]
  • Keegan TH, Gomez SL, Clarke CA, Chan JK, Glaser SL. Recent trends in breast cancer incidence among six Asian groups in the Greater Bay Area of Northern California. International Journal of Cancer. 2007;120(6):1324–1329. doi: 10.1002/ijc.22432. [PubMed] [Cross Ref]
  • Kessler RC, Mickelson KD, Shanyang Zhao. Patterns and correlates of self-help group membership in the United States. Social Policy. 1997;27(3):27–26.
  • Ko C, Sadler G, Ryujin L, Dong A. Filipina American women’s breast cancer knowledge, attitudes, and screening behaviors. BMC Public Health. 2003;3(1):27–32. doi: 10.1186/1471-2458-3-27. [PMC free article] [PubMed] [Cross Ref]
  • Kong E, Deatrick JA, Evans LK. The experiences of Korean immigrant caregivers of non-English-speaking older relatives with dementia in American nursing homes. Qualitative Health Research. 2010;20:319–329. doi: 10.1177/1049732309354279. [PubMed] [Cross Ref]
  • LeCompte MD. Essential ethnographic methods: Observations, interviews, and questionnaires. Walnut Creek, CA: AltaMira Press; 1999.
  • Marín G, Burhansstipanov L, Connell CM, Gielen AC, Helitzer-Allen D, Lorig K, Thomas S. A research agenda for health education among underserved populations. Health Education & Behavior. 1994;22(3):346–363. doi: 10.1177/109019819402200307. [PubMed] [Cross Ref]
  • Mast ME. Survivors of breast cancer: Illness uncertainty, positive reappraisal, and emotional distress. Oncology Nursing Forum. 1998;25(3):555–562. [PubMed]
  • Mathews HF. Negotiating cultural consensus in a breast cancer self-help group. Medical Anthropology Quarterly. 2000;14(3):394–413. doi: 10.1525/maq.2000.14.3.394. [PubMed] [Cross Ref]
  • Mathews HF. Cancer support groups and health advocacy: One size doesn’t fit all. In: McMullin J, Weiner D, editors. Confronting cancer: Metaphors, advocacy, and anthropology. 1. Santa Fe, NM: School for Advanced Research Press; 2009. pp. 43–62.
  • Maxwell AE, Bastani R, Vida P, Warda US. Results of a randomized trial to increase breast and cervical cancer screening among Filipino American women. Preventive Medicine. 2003;37(2):102–109. [PubMed]
  • McCracken M, Olsen M, Chen MS, Jemal A, Thun M, Cokkinides V, Ward E. Cancer incidence, mortality, and associated risk factors among Asian Americans of Chinese, Filipino, Vietnamese, Korean, and Japanese ethnicities. CA: A Cancer Journal for Clinicians. 2007;57(4):190–205. [PubMed]
  • McLaughlin LA, Braun KL. Asian and Pacific Islander cultural values: Considerations for health care decision making. Health & Social Work. 1998;23(2):116–126. [PubMed]
  • Montazeri A, Jarvandi S, Haghighat S, Vahdani M, Sajadian A, Ebrahimi M, Haji-Mahmoodi M. Anxiety and depression in breast cancer patients before and after participation in a cancer support group. Patient Education and Counseling. 2001;45(3):195–198. [PubMed]
  • Nilvarangkul K, McCann TV, Rungreangkulkij S, Wongprom J. Enhancing a health-related quality-of-life model for Laotian migrant workers in Thailand. Qualitative Health Research. 2011;21:312–323. doi: 10.1177/1049732310376635. [PubMed] [Cross Ref]
  • Pasick RJ, Barker JC, Otero-Sabogal R, Burke NJ, Joseph G, Guerra C. Intention, subjective norms, and cancer screening in the context of relational culture. Health Education & Behavior. 2009;36(Suppl):91S–110S. doi: 10.1177/1090198109338919. [PMC free article] [PubMed] [Cross Ref]
  • Pasick RJ, Burke NJ. A critical review of theory in breast cancer screening promotion across cultures. Annual Review of Public Health. 2008;29:351–368. doi: 10.1146/annurev.publhealth.29.020907.143420. [PubMed] [Cross Ref]
  • Pe-Pua R, Protacio-Marcelino EA. Sikolohiyang Pilipino (Filipino psychology): A legacy of Virgilio G. Enriquez. Asian Journal of Social Psychology. 2000;3(1):49–71. doi: 10.1111/1467-839X.00054. [Cross Ref]
  • Rafael VL. “Your grief is our gossip”: Overseas Filipinos and other spectral presences. Public Culture. 1997;9(2):267–291. doi: 10.1215/08992363-9-2-267. [Cross Ref]
  • Reuben SH. President’s Cancer Panel 2003–2004 Annual Report. Bethesda, MD: National Cancer Institute; 2004. Living beyond cancer: Finding a new balance.
  • Samarel N, Fawcett J, Krippendorf K, Piacentino JC, Eliasof B, Hughes P, Ziegler E. Women’s perceptions of group support and adaptation to breast cancer. Journal of Advanced Nursing. 1998;28(6):1259–1268. [PubMed]
  • Samarel N, Fawcett J, Tulman L. Effect of support groups with coaching on adaptation to early stage breast cancer. Research in Nursing & Health. 1997;20(1):15–26. [PubMed]
  • Sammarco A. Quality of life among older survivors of breast cancer. Cancer Nursing. 2003;26(6):431–438. [PubMed]
  • Silliman RA, Balducci L, Goodwin JS, Holmes FF, Leventhal EA. Breast cancer care in old age: What we know, don’t know, and do. Journal of the National Cancer Institute. 1993;85(3):190–199. [PubMed]
  • Smedley BD, Stith AY, Nelson AR. Unequal treatment: Confronting racial and ethnic disparities in health care. 1. Washington, DC: National Academies Press; 2004.
  • Strobel LM. Coming full circle: The process of decolonization among post-1965 Filipino Americans. Quezon City, Philippines: Giraffe Books; 2001.
  • Tam Ashing K, Padilla G, Tejero J, Kagawa-Singer M. Understanding the breast cancer experience of Asian American women. Psycho-Oncology. 2003;12(1):38–58. doi: 10.1002/pon.632. [PubMed] [Cross Ref]
  • Uchida Y, Kitayama S, Mesquita B, Reyes JAS, Morling B. Is perceived emotional support beneficial? Well-being and health in independent and interdependent cultures. Personality & Social Psychology Bulletin. 2008;34(6):741–754. doi: 10.1177/0146167208315157. [PubMed] [Cross Ref]
  • United States Census Bureau. Profiles of general demographic characteristics [Data file] 2001 Retrieved from http://www.census.gov/prod/cen2000/dp1/2kh00.pdf.
  • Vergara B. Pinoy capital: The Filipino nation in Daly City. Philadelphia: Temple University Press; 2008.
  • Von Eschenbach AC. NCI sets goals of eliminating suffering and death due to cancer by 2015. Journal of the National Medical Association. 2003;95:637–639. [PMC free article] [PubMed]
  • Woodgate RL, Leach J. Youth’s perspectives on the determinants of health. Qualitative Health Research. 2010;20:1173–1182. doi: 10.1177/1049732310370213. [PubMed] [Cross Ref]
  • Yoo GJ, Aviv C, Levine EG, Ewing C, Au A. Emotion work: Disclosing cancer. Supportive Care in Cancer. 2010;18(2):205–215. doi: 10.1007/s00520-009-0646-y. [PMC free article] [PubMed] [Cross Ref]