Abstract
This article describes research to develop a breast health intervention for women in Hawaiian churches. Native Hawaiian women are disproportionately burdened by breast disease and tend to be diagnosed at advanced stages when treatment options are more limited. Research suggests that cultural conflict may be a factor in Hawaiian women's underutilization of conventional health services. Phenomenological approaches guided data collection and analysis to explore the influence of religiosity and ethnocultural tradition in coping with breast cancer. The overarching theme was kakou (we or us), which emphasized ways of coping oriented to the family collective and focused on family well-being. Findings offer a portal for understanding the lived experience of survivors and families in Hawaiian churches. Considerations are suggested for those practitioners assisting clients from collectivist-oriented cultures.
Keywords: Breast cancer, spirituality, religiosity, coping, Native Hawaiians
BACKGROUND
Advances in treatment, prevention education, and early detection screening for breast and other carcinoma have contributed substantially to the unprecedented decline in cancer mortality rates of recent years (American Cancer Society, 2003). This positive development is evident in the State of Hawai'i where residents enjoy the longest life span, as well as the lowest cancer mortality rates of any other state. Yet against this optimistic backdrop exists less than favorable cancer outcomes for native Hawaiians (NH), the indigenous people of the Hawaiian Islands. Breast cancer substantially contributes to the cancer burden among Native Hawaiian women (NHW), who as a group have the highest rates of age-adjusted breast cancer incidence and mortality in Hawai'i. Incidence and mortality rates for NHW are 162.4 and 31 per 100,000, respectively. In comparison, incidence and mortality rates for women of all races combined are 128.3 and 18.1 per 100,000, respectively. In national comparisons, 5-year survival rates among NHW are 9% lower than for Caucasians and women of all races combined (American Cancer Society, 2003). Disparate outcomes are associated with relatively low utilization of health services by NHW and are understood to be at least partially the result of cultural conflict experienced in conventional, Western health care. Strongly indicated is the need for empirically tested psychosocial interventions reflecting NH cultural strengths, including those related to spirituality and the family collective (Santos et al., 2001).
As part of a 5-year effort to pilot a multifaceted breast health intervention for women in Hawaiian churches, developmental research was conducted on the use of spiritually based resources in coping and adaptation to breast cancer. Findings may be relevant to social workers, pastoral counselors, and others intervening at the nexus of cancer, culture, and religiosity, as well as those with a broader interest in cancer and other health disparities.
Spiritually Based Resources and Coping
Spiritually based resources (SBR) are beliefs, values, and practices grounded in a relationship with a sacred source such as God, Higher Power, or however the individual envisions the divine being (Pargament, 1997). SBR may be grounded in religiosity, a type of spirituality characterized by an institutionalized body of beliefs, rituals, practices, and an identifiable body of adherents. An appreciation for the painful emotions inherent in human existence and an orientation toward adversity as a pathway to understanding are common to many religions. Commonalities notwithstanding, religions vary considerably with respect to the focus and form of human response in coping and transcending life crises (Pargament, 1997).
The generally salutary effect of spirituality on coping, adaptation, and other health outcomes has led to research on the function of religiosity as a stress mediator during times of illness. Research on SBR use in coping with cancer builds on the stress appraisal coping framework of Lazarus and Folkman (1984) in which appraisal (i.e., evaluation of a significant event as threat, loss, or challenge) is mediated by coping resources (i.e., meanings, beliefs, social support, other practices) and influences health-related outcomes (Gall, de Renart, & Boonstra, 2000; Halstead & Fernsler, 1994). From this functional perspective, coping and religiosity are both meaning-centered processes involving a search for significance in life events (Pargament, 1997). These processes may be complementary. That is, coping may be informed by religious beliefs, facilitated by religious practices, and characterized by the construction of meanings grounded in a relationship with the sacred.
Across the illness trajectory, SBR are used by cancer survivors of all ethnicities including those of Hawaiian ethnicity (Ashing-Giwa et al., 2004; Braun, Mokuau, Hunt, Kaanoi, & Gotay, 2002). Beliefs about self in relation to the universe are among the strongest correlates of appraisal among long-term survivors of breast and other types of treatable cancers (Bowman, Deimling, Smerglia, Sage, & Kahana, 2003, Jenkins & Pargament, 1995). Coping through service to others may be especially helpful in facilitating resolution of existential issues (Gall et al., 2000; Ka'opua, Gotay, & Boehm, 2007). The diversity of spiritual and religious traditions used in coping with breast cancer indicates consideration of the interrelatedness of ethnicity, culture, and SBR (Ashing-Giwa et al., 2004). Consideration of this relationship is important in developing health interventions for native Hawaiians whose tradition of health is holistic and includes spirituality.
Native Hawaiian Culture, Health, and Spirituality
Cultural conflict is indicated as a factor in native Hawaiians' low or no use of conventional Western health services, including those specific to cancer prevention and control (Gotay et al., 2000; Hawai'i State Department of Health, 1998). This conflict may reside in the fundamental differences between the Hawaiian cultural view of health and that of Western allopathic medicine (Blaisdell, 1989). In Hawaiian culture, health is enunciated as an optimal state of wellness (ola pono) occurring when there is harmony in three primary and interrelated life domains. Referred to as the lokahi (harmony) triangle, these domains include: (a) the physical world, (b) human relations emphasizing unity in the family collective of blood-related ('ohana) and fictive kin (hoahanau), (c) spirituality emphasizing accord with God (Ke Akua), ancestral spirits (na 'aumakua), or other life forms held sacred (Rezentes, 1996). Pono (morality of mutuality in all relationships) guides behaviors of caregiving and resource stewardship (Ito, 1987). Failure to do be pono (i.e., take moral action) in any point of the triangle may lead to physical ailment. Thus, healing of a physical ailment involves locating the source(s) of disharmony through assessment of bodily symptoms, as well as the identified patient's family and spiritual relationships (Blaisdell, 1989). The integrative nature of Hawaiian health practices is reflected in the ho'oponopono, or spiritually grounded family discussion traditionally conducted prior to medicinal treatments. For example, ho'oponopono includes: (a) family prayer, (b) procedures for pooling the family's spiritual and emotional strengths, (c) assignment of individual responsibility within the family collective, and (d) discernment of the meaning of illness to each family member, as well as to the collective (Ka'opua, 2003). Western allopathic medicine is biomedically oriented and tends to treat disease as a series of observable physical and biochemical processes, focuses on physical symptoms, and provides minimal attention to the spiritual and relational elements of illness (Bannerman, Burton, & Ch'en, 1983). It is speculated that Hawaiians ascribing to the traditional paradigm of holistic health and preferring integrative healing practices might experience conflict in Western health services (Rezentes, 1996).
Research in Hawaiian health suggests that spirituality and collectivist relations are important considerations in providing care to native Hawaiians in contemporary times (Look & Braun, 1995; Santos et al., 2001). Reliance on spiritual and family resources may function as protective factors, enhancing stress resilience and increasing the likelihood of positive adaptation (McCubbin, McCubbin, Thompson, & Thompson, 1995). Psychosocial oncology research indicates that Hawaiian customs, spiritual connection, and family support are sustaining factors for many NH cancer survivors and essential to include in interventions for enhancing quality of life (Braun et al., 2002; Eide, 2006).
Religiosity, Hawaiian Tradition, and Historically Hawaiian Churches
Spirituality is considered a defining characteristic of Hawaiian culture; however, it is important to recognize that considerable diversity in spirituality and religiosity exists among NH living in contemporary times. This developmental study focuses on religiosity associated with historically Hawaiian churches. By definition, historically Hawaiian churches are those churches chartered in Hawaiian communities by Calvinist (Kalawina) missionaries during the 19th century and presently belonging to the Association of Hawaiian Evangelical Churches (AHEC). The AHEC is a nonprofit corporation associated with the United Church of Christ and dedicated to perpetuating the Judeo-Christian faith through the expression of Hawaiian language and indigenous Hawaiian cultural forms (United Church of Christ, 1996).
From the 1820s forward, Kalawina churches were planted in thriving Hawaiian communities on all islands (United Church of Christ, 1996); today, many of these same communities have been devastated by the effects of evolving socioeconomic changes and are designated as medically underserved areas (U.S. Department of Health and Human Services, 2003). In the midst of profound changes, 24 historically Hawaiian churches have survived to affirm faith through Hawaiian cultural ways or na mea Hawai'i (Inoue, 2003). Churches conduct worship in Hawaiian and English languages and often integrate traditional Hawaiian cultural practices into church rituals. For example, Hawaiian chants ('oli) may be used to open important church gatherings and sea salt (pa'akai) and the sprinkling of holy water by ti leaf may be used in rituals of purification and sanctification (Inoue, 2003).
Notably, value preferences originating from pre-Western contact Hawai'i, such as aloha (love or friendly greeting), may be reframed to more closely conform to Judeo-Christian beliefs. For example, the term aloha is linguistically comprised of the words alo (literally, to come face-to-face) and ha (literally, the breath of life). In popular parlance, the term aloha is used as a friendly greeting or may be used to denote love. However, when translated into the Christian idiom, aloha may connote God's breath of life to humankind or may be used to communicate the blessing of receiving the breath of life from God (Inoue, 2003). Such interpretations suggest a unique subculture, which in the postmodern period distinguishes Christian faith from the historical role of Christian missionaries in denigrating Hawaiian cultural practices. This subculture seeks to meaningfully reconcile Hawaiian tradition (i.e., pre-Western contact) with Judeo-Christian theology and practices in ways that honor the integrity of both (Patterson, 1998). Understanding this unique and evolving subculture is essential in tailoring a health intervention for those in Hawaiian churches.
A review of the literature on spiritually based resources in coping with breast cancer, native Hawaiian culture and health, and historically Hawaiian churches led to the formulation of questions for this inquiry: What are the challenges experienced by native Hawaiian breast cancer survivors and family members? What is the process by which survivors and family members cope, develop meaning in the face of cancer-related adversity, and ultimately, come to terms with these challenges? Are there culture-specific values and practices that might be important to include in developing a breast health intervention for women in Hawaiian churches?
METHOD
This study was conducted on Maui and O'ahu islands in the summer of 2005. An ad hoc advisory committee, comprised of leaders from three Hawaiian churches, convened to assist in identifying potential study participants. Given the research questions, individuals were identified using expert sampling, a type of purposive sampling that aims to elicit information from persons with acknowledged expertise (Bernard, 2002). Criteria for expertise in this study, included (a) personal experience as either a long-term (⩾5 years beyond initial diagnosis) breast cancer survivor or an immediate family member (e.g., sibling, spouse, parent, adult child) from Hawaiian churches; (b) knowledge of Hawaiian language (i.e., minimally, an understanding of the language and optimally, conversational proficiency) and/or of Hawaiian culture (i.e., knowledge of cultural values and practices through life experience, training in cultural arts, and/or university studies). Eight individuals were identified by the advisory group. Eligibility was verified with all potential participants prior to study enrollment. Eight individuals met all eligibility criteria and agreed to be interviewed. However, one survivor declined to give informed consent for an audiotaped interview, stating a preference for the interviewer to learn “in the real Hawaiian way” (i.e., through careful listening and without written or taped notes). This interview is not included in the current analysis. The final sample (N = 7) was comprised of three breast cancer survivors and four family members. At the time of the interview, all survivors reported being symptom-free and time since diagnosis averaged 9 years. Six participants were of Hawaiian ethnicity, four were female, and three were ministers (two males). Age ranged from 48 to 76 years with a mean age of 59 years. All participants were college graduates (five with advanced degrees in divinity, nursing, or social work).
Phenomenological approaches (Patton, 2002) guided data collection and analysis to explore the influence of religiosity and ethnocultural tradition in coping with breast cancer. The principal investigator (PI) invited potential interviewees to participate in a discussion focused on their experiences of breast cancer survivorship. The purpose of the interview (i.e., to inform a breast health intervention in churches) was explained at the point of invitation, as well as at the beginning of each interview. Interviews were held in locations chosen by participants, with almost all occurring at a church. The PI conducted all interviews and began each interview with “talk story,” a culturally familiar style of discussion (Gotay & Wilson, 1998), which includes the sharing of commonalities and concerns. After obtaining written informed consent, a semi-structured schedule of questions was flexibly used to explore the lived experience in six areas: (a) personal concerns during the time of diagnosis, treatment, recovery, long-term survivorship, or, when applicable, death of a loved one; (b) ways of coping with cancer-related concerns and challenges, ways of coping informed by Hawaiian cultural practices and/or Judeo-Christian religion; (c) ways of coping found most helpful; (d) lessons or meaning discerned through the lived experience; (e) concerns experienced in coming to terms with cancer; and (f) Hawaiian cultural and/or religious beliefs important to consider in developing a breast health intervention.
Interviews lasted about 90 minutes. At the completion of each interview, participants were thanked and offered a voucher for use at a local sundry store. Audiotaped interviews were transcribed, cleansed of names and other identifying information, and together with interviewer impressions, entered into a software program for the management of text data. The research team used an analytic procedure that included: (a) ongoing team discussion of emerging themes, (b) continuous analysis and comparison of themes from a single interview with emerging themes from all other interviews, (c) development of an indigenous classification system (i.e., classification of themes and subthemes fits data in its cultural context), (d) use of classification system in coding all interviews, and (e) filing of sections of transcripts by themes, core processes, and characteristic actions.
Several measures were taken to ensure accuracy of interpretation. These included independent coding of transcripts by at least two research team members, ongoing discussion and consensus agreement on the classification of themes, and review of preliminary findings by select interviewees and a senior colleague, with subsequent revision when indicated.
FINDINGS
Participants chronicled their experiences in coping with the bio-psychosocial-spiritual challenges of breast cancer, as well as the oftentimes immutable consequences of the disease. Although participant narratives were highly personal and unique in detail, similar themes were detected in coming to terms with breast cancer at the nexus of religiosity and Hawaiian tradition.
Collectivism in the Lived Experience: Kakou
Kakou—it's not about me; it's about us. Breast cancer is a disease that profoundly affects people's lives. The cancer happens to one person and affects their personhood, their lives. Family members become victims, too. What allows me to go beyond the cusp is the kakou! (family member)
Kakou (literally, us or we) in this excerpt refers to the collectivist orientation of survivors and family members. This overarching theme was detected in all narratives. Across the breast cancer trajectory, kakou was characterized by an emphasis on the well-being of the patient/survivor in the context of the family. Family was broadly defined to include first-degree relatives and extended blood related kin ('ohana) as well as fictive kin (hoahanau). Survivors and family members reported sharing daily and existential challenges and together engaged in a process of coping that included the use of SBR. Belief in the healing power of God, collaboration with God, prayer, family devotions, and other SBR were used to arrive at treatment decisions, inspire hope, guide discernment of the meaning of illness, and ultimately used to inform action. The minister of a Hawaiian church and family member to a survivor iterates upon survivorship as a collective experience among NH families:
A primary concern of patients is the welfare of family. They are concerned about the survival of the 'ohana without them. Church people whom I've counseled tend to experience cancer together. A second concern is the raising of the very human question of “why” this has happened. To Hawaiians, this usually includes “what” God is saying to the family, as well as the individual.
At the nexus of Hawaiian culture and Judeo-Christian religiosity, kakou was reflected in four core actions: (a) responsibility (kuleana) to ease physical and psychosocial-spiritual burdens experienced by the survivor and other family members, (b) primary reliance (hilina'i) on spiritually based resources to cope and discern meaning, (c) reflection (no'ono'o) upon family and community strengths to inspire hope and discern meaning in cancer-related challenges, and (d) the search to find goodness (lokomaika'i) in the face of profound, often adverse change and to take right action (pono) on behalf of the family and community.
Responsibility (Kuleana) to Ease Physical and Psychosocial-Spiritual Burdens
Kuleana, or sense of responsibility to the collective, was consistently reflected in efforts to mitigate the potentially negative consequences of breast cancer on the survivor, as well as other family members. Survivors recounted the ways in which family members eased the burden of cancer through providing concrete, emotional, spiritual, and informational support. Such support was deemed essential to treatment decision-making and treatment recovery. A survivor remembers:
Getting the news that I had breast cancer wasn't the best. But it wasn't the worst either, because my husband went with me to all the tests. He was like a second set of ears. This allowed me to deal with my emotions. Those five years of treatment were difficult. We did what we needed to do, prayed, and left the rest to God.
Family members were challenged to deal with their own emotional-spiritual reactions to the disease while at the same time providing support to their loved ones. Family members described this challenge:
For me, there is no other pain in life that can really challenge your body and soul like a loved one's suffering and death. I prepared myself spiritually so that I could go to my family with the strength to be there for them in whatever way needed.
The surgeon talked to us about the removal of my mother's breast. I thought we dealt with what it would look like then. But the visual tells you what is actually there. The first time she saw the weeping wound, she cried out loudly. My mom is very strong in her faith and I just didn't expect that reaction. Out of that, we began a process of talking about it.
Ministers in the sample had all provided pastoral counseling to breast cancer survivors and their family members. From this perspective, they described families who were spiritually burdened by the belief that illness is a result of transgression upon God or others. To NH families, this burden might be construed as an intergenerational issue and could prompt a search to rectify the past actions of deceased family members. Families might seek counseling to ease their present burden (i.e., specific to breast cancer) as well as to preempt adverse events from occurring in the future. A minister and family member to a survivor observes themes from his counseling practice:
The cultural part of the burden is “did I do something wrong in my family?” Or “did someone in our family do something wrong?” For some religious Hawaiian families, there is the belief that the sins of the father are passed on generation to generation. For example, if an ancestor was kahuna 'ana 'ana [priest-physician likened to a sorcerer of evil spirits], a curse may have been put on the family. The family feels as though they need to search back into what was done in the past, how that affects the present, what needs to be done to set the situation right.
Reliance on SBR to Cope and Discern Meaning
Participants relied on multiple sources of knowledge to arrive at treatment decisions, to cope with cancer-related challenges, and to construct meanings that might facilitate a positive integration of the cancer experience into the larger life fabric. While information was sought from secular sources (i.e., healthcare providers, other survivors), participants relied primarily on spiritually based coping resources. The differential use of SBR and secular sources in reaching important treatment decisions is explained:
I cried when the doctors told me that I needed to have my breast removed. Later, I remembered something from Scripture that helped me move forward. I thought, “This is what the doctor feels is good.” Then I prayed, “Lord, if this is Your will, then it will be done with my full capacity.” (survivor)
We had 'ohana devotions. The children felt that God was with them at the time of diagnosis and treatment. When they got the good news about their mother's prognosis, then they knew God was with them! (family member)
Reflecting Upon Family and Community Strengths to Inspire Hope and Discern Meaning
Hope was deemed important in coming to an acceptance of the realities of cancer and was believed to facilitate positive coping and adaptation. However, as new challenges emerged across the illness trajectory, the kind of hope needed might vary.
In the ministry, we see that hope takes various forms. Hope that there's a cure, that there's an emotional acceptance and preparation for whatever happens, that there's a renewal of spirit and wisdom to see challenges as opportunity. (family member)
Staying hopeful in adverse circumstances could be difficult, especially as survivors endured treatment and family members were faced with the possibility of losing their loved one. Participants indicated that they often drew on past experiences of adversity to inspire coping and adaptation. Connecting with others (e.g., immediate family, church family) through the sharing of stories (na mo'olelo) told with the intent to inspire and instruct was experienced as a familiar extension of the Hawaiian oral tradition and viewed as an important means of coping. One survivor described the sharing stories of hope in adversity as being “in our blood” (i.e., cultural).
Ethnic-specific experiences, Hawaiian cultural values, and Judeo-Christian beliefs, as embedded in family stories, were reflected upon (no'ono'o) and functioned to inspire faithfulness in facing the cascade of cancer-related challenges across the illness trajectory.
Five of my parents' children died before their first year. When the first few died, my father saw it as hard luck; they lived in the country, no doctor. When the fourth one died, he began to connect the losses with spiritual meaning. When the fifth child died, my parents went to God in prayer, confessed their hewa [sins], and re-dedicated themselves and all their children—should they be blessed with more children—to God. More children were born and survived. This story connects me to my parents who faced the loss of their children. These are the spiritual messages we grew up with. Faithfulness to God and the commitment our parents made to us and for us. (family member)
As a church family, we've been through a lot. Our church was started in the early 1800s, but sadly, burned down in a town fire a few decades later. Our kupuna [elders] after going through that experience said, “we no* belong here. Ke Akua [God] wen* burn down our church. We gotta* move out.” That's the rationale they used to build in another place. Sometimes, you gotta* get out, do something different, build in another place. When my loved one got sick, I asked God for strength to go on, to move from the pain of this most terrible of diseases. I was looking for hope and a recommitment to God. (family member) [*Hawaiian Creole patois]
Search for Goodness in Adversity and Taking Right Action
Survivors and family members looked to find goodness (lokomaika'i) in the lived experience of cancer and sought to take right action (pono) in their relationships with God, family, and community. Deeply held Judeo-Christian beliefs and spiritual values from Hawaiian culture are reflected in lessons learned through the lived experience.
There is a spiritual process that allows you to move through suffering to a point of satisfaction. For us, this is blended with the tradition of our ancestors. When God made us, He made us good. In Hawaiian, we use the word lokomaika'i which literally means the good inside you, but can also mean finding the goodness in life. When things get messed up, we got to work to make pono [right] in our lives. Our bonds as a family were strengthened by the crisis. We moved on stronger in our commitment to each other and to Ke Akua [God]. (family member)
In dealing with cancer, there are levels of understanding, meaning, and in Hawaiian, kaona or deeper, more hidden meanings. Seeing through spiritual eyes is the vehicle for understanding. Having spirituality as part of a cancer program for Hawaiians is important. (family member)
Everything we have is God's blessing. Living your spirituality means respecting the blessings we get. Our kupuna [elders] taught us to care for what we have so your grandchildren will have it. We need to take this message out to our communities so that our future as a people continues. (survivor)
Study participants reported involvement in religious, health-promoting, and charitable activities from which they derived a sense of purpose and a context for integrating learning gleaned through the lived experience. Five of seven participants were involved in activities promoting breast cancer awareness and/or support to survivors and their families.
Trying to make a difference for other people is how I practice my faith. As Hawaiians, we have a great aloha [fondness] for trying to help. In the church, we are taught the Great Law [commandments]. In the Hawaiian church, we see this as malama ke kahi i ke kahi, caring for each other. There is a need to reach out to women who don't have support or to help women participate in an activity like breast cancer screening that they wouldn't otherwise participate in. (survivor)
In our culture and to some extent, in our Christian faith, we are responsible for our lives, including our physical ailments. It is from this acknowledgement that comes a God-like response, the living of your faith. (family member)
In coping with breast cancer, participants described a crisis of meaning and a search for significance and purpose. Hawaiian cultural tradition and Judeo-Christian theology informed the ways in which participants coped with daily challenges, constructed meaning during times of uncertainty, came to terms with suffering, threat, and loss, and, notably, found new or invigorated purpose in life. The Hawaiian values of kakou (us, we, the family collective), kuleana (responsibility to the family collective and/or to service to God), pono (taking moral or right action in dealing with family members and/or God), malama ke kahi i ke kahi (caring for each other), and lokomaika'i (finding goodness in all life) are identified. Also described as important are complementary Judeo-Christian beliefs related to adversity as opportunity for strengthening one's faith and the call to responsible stewardship of all resources, including those related to health and well-being.
DISCUSSION
Findings suggest that traditional Hawaiian cultural ways and Judeo-Christian religiosity merged in a generally complementary fashion to provide a unique interpretive system that influenced the ways in which participants encountered, understood, and addressed cancer-related challenges. Participants' use of SBR in coping was consistent with Judeo-Christian expressions of faith in adversity, yet interwoven with Hawaiian cultural values and practices. Perhaps most profound was the pervasiveness of kakou (us, we), or the collectivist orientation that survivors and family members brought to the lived experience of breast cancer.
While individual challenges were reported, the overall substantive content of the narratives focused on challenges to collective well-being (i.e., of blood-related kin, church family, greater community of Hawaiians, cancer survivors). Although previous research with other ethnocultural groups has demonstrated that breast cancer affects family members (Baider, Cooper, & DeNour, 2000), Native Hawaiians in this study experienced breast cancer as a family-experienced illness. This collectivist orientation deserves focused attention and specific tailoring of cancer prevention and control interventions.
The shared experience of coming to terms with breast cancer was apparent across the illness trajectory and was reflected in participants' efforts to relieve existing and developing bio-psychosocial-spiritual burdens on other family members. Participants insisted on the importance of the shared experiences of the family and the acknowledgement that members collectively share illness-related burdens. Participants also referenced the centrality of the intergenerational collective in coping with illness and other adversities. Through recounting and reflecting upon family and community stories (na mo'olelo), participants derived meanings of resilience, affirmed the importance of reliance upon God in times of adversity, and arrived at an acceptance of painful life events, which ultimately allowed them to move forward with renewed faith and vigor for life.
Use of SBR, as infused with Hawaiian cultural traditions, contributed in large part to the ongoing sense that coping with illness was a shared activity requiring communication and collective problem-solving. In the lived experience of survivorship, reliance on the relationship with God was part of a dynamic process in coping and finding significance in adversity. Notably, the reliance on God (hilina'i) did not preempt participants' sense of proactive agency. Rather, participants distinguished that which could be accomplished through their own efforts from that which needed to be turned over to God. Shared religious rituals and practices to inspire hope and strengthen family connections (e.g., 'ohana or family devotions) followed at the nexus of Judeo-Christian religiosity and Hawaiian cultural tradition.
Perhaps the ultimate embodiment of collective spirituality was reflected in a commitment to take action that might make a positive difference in the larger Hawaiian community. The felt sense of kuleana, or responsibility of the individual to promote well-being within the larger community, motivated participants to provide informational, spiritual, emotional, and tangible support to others affected by breast cancer. Clearly, the findings of this study implicate the relevance of the culturally emic concept of the lokahi (harmony) triangle with its trifold focus on spirituality, humankind, and the physical world. Participants in this study exemplified this complement of holistic well-being in relationship with God, others, and the physical world. Indicated is the importance of integrating the Hawaiian constructs of kakou, kuleana, hilina'i, and lokahi in breast health interventions promoted through Hawaiian churches.
While this study offers a number of important insights for incorporating spirituality in social work practice within the Native Hawaiian population, its findings may also be relevant to other ethnocultural groups. Although the over 30 distinct cultural and linguistic groups that comprise Asian and Pacific Islander Americans are each unique in history and cultural heritage, a growing body of research suggests that these cultures as a whole tend to display more collectivist or group-oriented tendencies vis a vis individualist tendencies (McLaughlin & Braun, 1998). Collectivist cultures share several value tendencies, including (a) reliance on shared family decision-making, (b) filial piety and family responsibility, (c) receptive communication with an emphasis on silence and understanding derived through context, and (d) preservation of harmony and avoidance of interpersonal conflict (McLaughlin & Braun, 1998). Clearly, findings from this study may be useful for social work practitioners in assisting clients with a collectivist orientation in coping with cancer, as well as possibly other major health concerns.
Several limitations of the present study behoove consideration in application of findings to practice. First, this study was retrospective; hence, the potential exists for bias in the recall of thoughts, feelings, and events. Previous research on coping with serious illness indicates that feelings of distress may dissipate with the passage of time (Franks & Roesch, 2006). Thus, participants in this study may have described their experiences in a more positive manner simply due to the passage of time. Second, the purposive sample of ministers and other church leaders advantages the perspective of those who might be more inclined to rely on SBR; thus, findings may not be representative of all congregants in Hawaiian churches. Third, findings are based on self-report and there exists the potential for social desirability bias.
While these biases limit generalization of study findings, it is also important to note the strengths inherent in the study. By incorporating culturally specific dialogic methods (e.g., “talk story”) combined with a flexibly used, semi-structured interview design, participants were able to share their experiences in a form and style reminiscent of the Hawaiian oral tradition of storytelling. This allowed participants to engage with the research in a meaningful way. In doing so, they provided rich insights into the experience of survivorship, as well as cultural detail relevant to future research and practice.
Findings provide several important directives for future research. Learning more about the experiences of religiously-oriented and culturally-centered Native Hawaiians coping with cancer will require enlarging the sample size and incorporating multiple methods to assess the relationship of SBR, meaning-making, and coping outcomes. Increasing the number and diversity of participants in the study may allow for broader conclusions about the effects of church-based support on families coping with breast cancer in the NH community. Finally, future studies might describe and compare the experiences of church leaders in other ethnic churches to assess concordance with the experiences of historically Hawaiian church leaders.
Findings from this study will be used in developing a culturally responsive, faith-based breast health intervention in historically Hawaiian churches. The intervention will reflect an appreciation for the collective nature of coping with cancer and the use of SBR in the context of the NH family system. Indicated are supportive and psycho-educational services that focus on family needs, concerns, and resources. Findings emphasize the importance of family well-being and stewardship of all resources, including those specific to physical health. By extension, these value preferences might be incorporated into breast cancer screening promotions.
Participant narratives offer a portal for understanding the lived experience of breast cancer survivors and family members in Hawaiian churches. Findings describe the intricate ways in which ethnocultural tradition and religiosity coalesce to influence coping and other health-related behaviors. The grounding of interventions in a context of holistic wellness with attention to collectivist relations and meaningful integration of Hawaiian cultural and faith-based practices may offer the prospect of enhanced quality of life for Native Hawaiian survivors and families in churches. Themes described in this article may provide helpful considerations for those developing health-related interventions with other ethnocultural and religious groups.
Acknowledgments
This study was supported by the National Cancer Institute, K07, CA-105088, “Exploring the Feasibility of a Faith-Based Ha'imo'olelo Intervention to Increase Breast Cancer Screening Among Older, Native Hawaiian Women” (L. S. Ka'opua, PI). The authors extend appreciation to Carolyn Gotay, PhD, Professor, Cancer Research Center of Hawai'i; Lorena Umana, MSW; and Rhoda Kaluai, MPH, for assistance in data collection, analysis, and review. Special appreciation is extended to the survivors and family members who generously shared their experiences.
Contributor Information
Lana Sue I. Ka'opua, School of Social Work and the Cancer Research Center of HI, University of Hawai'i, 1800 East-West Road, Henke Hall/Honolulu, HI 96822..
Diane B. Mitschke, School of Social Work, University of Texas at Arlington, 211 S. Cooper St., Box 19129, Arlington, TX 76019..
Karen C. Kloezeman, Cancer Research Center of Hawai'i, University of Hawai'i, 1960 East-West Road, Biomed C-105, Honolulu, HI 96822..
REFERENCES
- American Cancer Society . Hawai'i cancer facts and figures 2003–2004. American Cancer Society, Hawai'i Pacific, Inc; Honolulu, HI: 2003. [Google Scholar]
- Ashing-Giwa KT, Padilla G, Tejero J, Kraemer J, Wright K, Coscarelli A, et al. Understanding the breast cancer experience of women: A qualitative study of African American, Asian American, Latina and Caucasian cancer survivors. Psycho-Oncology. 2004;13:408–428. doi: 10.1002/pon.750. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Baider L, Cooper CL, Kaplan De-Nour A, editors. Cancer and the family. 2nd ed. John Wiley & Sons; Chichester, England: 2000. [Google Scholar]
- Bannerman RH, Burton J, Ch'en WC, editors. Traditional medicine and health care coverage. World Health Organization; Geneva: 1983. [Google Scholar]
- Bernard RH. Research methods in anthropology: Qualitative and quantitative methods. AltaMira; Walnut Creek, CA: 2002. [Google Scholar]
- Blaisdell RK. Historical and cultural aspects of Native Hawaiian health. In: Wegner EL, editor. Social process in Hawai'i: The health of native Hawaiians. Vol. 32. University of Hawai'i; Honolulu: 1989. pp. 1–21. [Google Scholar]
- Bowman KF, Deimling GT, Smerglia V, Sage P, Kahana B. Appraisal of the cancer experience by older long-term survivors. Psycho-Oncology. 2003;12:226–238. doi: 10.1002/pon.630. [DOI] [PubMed] [Google Scholar]
- Braun KL, Mokuau N, Hunt GH, Kaanoi M, Gotay CC. Supports and obstacles to cancer survival for Hawai'i's native people. Cancer Practice. 2002;10:192–200. doi: 10.1046/j.1523-5394.2002.104001.x. [DOI] [PubMed] [Google Scholar]
- Eide P. Native Hawaiian women and the experience of breast cancer. Women's Health. 2006;44:41–59. doi: 10.1300/j013v44n04_03. [DOI] [PubMed] [Google Scholar]
- Franks HM, Roesch SC. Appraisals and coping in people living with cancer: a meta-analysis. Psycho-Oncology. 2006;15:1027–1037. doi: 10.1002/pon.1043. [DOI] [PubMed] [Google Scholar]
- Gall TL, Miguez de Renart RM, Boonstra B. Religious resources in long-term adjustment to breast cancer. Journal of Psychosocial Oncology. 2000;18:21–37. [Google Scholar]
- Gotay CC, Banner RO, Matsunaga DS, Hedlund N, Enos R, Issell BF, et al. Impact of a culturally appropriate intervention on breast and cervical screening among Native Hawaiian women. Preventive Medicine. 2000;31:529–537. doi: 10.1006/pmed.2000.0732. [DOI] [PubMed] [Google Scholar]
- Gotay CC, Wilson ME. Social support and cancer screening in African American, Hispanic, and Native American women. Cancer Practice. 1998;6:31–37. doi: 10.1046/j.1523-5394.1998.1998006031.x. [DOI] [PubMed] [Google Scholar]
- Halstead MT, Fernsler JI. Coping strategies of long-term cancer survivors. Cancer Nursing. 1994;17:94–100. [PubMed] [Google Scholar]
- Hawai'i State Department of Health . State plan of the Hawai'i Breast and Cervical Cancer Control Program. Department of Health, Breast and Cervical Cancer Control Program; Honolulu, HI: 1998. [Google Scholar]
- Inoue A. An ethnographic study of the construction of Hawaiian Christianity in the past and present. University of Hawai'i; Honolulu: 2003. Unpublished doctoral dissertation. [Google Scholar]
- Ito KL. Emotions, proper behavior (hana pono) and Hawaiian concept of self, person, and individual. In: Robbilard AB, Marsella AJ, editors. Contemporary issues in mental health research in the Pacific Islands. Social Sciences Research Institute; Honolulu, HI: 1987. pp. 45–71. [Google Scholar]
- Jenkins RA, Pargament KI. Religion and spirituality as resources for coping with cancer. Journal of Psychosocial Oncology. 1995;13:51–74. [Google Scholar]
- Ka'opua LS. Training community practitioners in a research intervention: Practice examples at the intersection of cancer, Western science, and native Hawaiian healing. Cancer Control, Cancer Culture and Literacy Supplement. 2003;5:5–12. doi: 10.1177/107327480301005s02. [DOI] [PubMed] [Google Scholar]
- Ka'opua LS, Gotay CC, Boehm PS. Spiritually-based resources in adaptation to long-term prostate cancer survival: Perspectives of elderly women. Health and Social Work. 2007;32:29–40. doi: 10.1093/hsw/32.1.29. [DOI] [PubMed] [Google Scholar]
- Lazarus RS, Folkman S. Stress, appraisal, and coping. Springer; New York: 1984. [Google Scholar]
- Look MA, Braun KL. A mortality study of the Hawaiian people 1910–1990. The Queen's Health System; Honolulu, HI: 1995. [Google Scholar]
- McCubbin HI, McCubbin MA, Thompson EA, Thompson A. Resiliency in ethnic families: A conceptual model for predicting family adjustment and adaptation. In: McCubbin HI, McCubbin MA, Thompson EA, Thompson AI, Fromer JE, editors. Resiliency in ethnic minority families: Native and immigrant American families. Vol. 1. University of Wisconsin System; Madison: 1995. pp. 3–48. [Google Scholar]
- McLaughlin LA, Braun KL. Asian and Pacific Islander cultural values: Considerations for health care decision-making. Health and Social Work. 1998;23:116–126. doi: 10.1093/hsw/23.2.116. [DOI] [PubMed] [Google Scholar]
- Pargament KI. The psychology of religion and coping. Guilford; New York: 1997. [Google Scholar]
- Patterson K. The spam of PAAM. New conversations. A light to the nations: Sharing the gifts of Pacific Islanders and Asian Americans in the United Church of Christ, 40(1) United Church of Christ Board for Homeland Ministries; Cleveland, OH: 1998. [Google Scholar]
- Patton MQ. Qualitative research and evaluation methods. 3rd ed. Sage; Thousand Oaks, CA: 2002. [Google Scholar]
- Rezentes W. Ka Lama Kukui Hawaiian psychology: An introduction. A'ali'i Books; Honolulu, HI: 1996. [Google Scholar]
- Santos LA, Mokuau N, Abrigo L, Braun KL, Tsark JU, Mackura G, Kahaulau R, Chong CDK. 'Imi Hale: Establishing an inheritance for native Hawaiians on cancer awareness, research and training. Pacific Health Dialog. 2001;8:436–445. [PubMed] [Google Scholar]
- United Church of Christ . Association of Hawaiian Evangelical Churches: Articles of incorporation. Honolulu, HI: 1996. [Google Scholar]
- U.S. Department of Health and Human Services, Health Resources and Services Information Medically underserved areas/medically underserved populations. 2003 Retrieved October 2, 2003, from http://muafind.hrsa.gov/