20
This article was downloaded by: [Widener University] On: 24 April 2014, At: 22:46 Publisher: Routledge Informa Ltd Registered in England and Wales Registered Number: 1072954 Registered office: Mortimer House, 37-41 Mortimer Street, London W1T 3JH, UK Women & Health Publication details, including instructions for authors and subscription information: http://www.tandfonline.com/loi/wwah20 Native Hawaiian Women and the Experience of Breast Cancer Phyllis Eide PhD and MPH and MS and APRN and BC a a Washington State University Intercollegiate College of Nursing , 2917 West Fort George Wright Drive, Spokane, WA, 99224 E-mail: Published online: 22 Sep 2008. To cite this article: Phyllis Eide PhD and MPH and MS and APRN and BC (2007) Native Hawaiian Women and the Experience of Breast Cancer, Women & Health, 44:4, 41-59 To link to this article: http://dx.doi.org/10.1300/J013v44n04_03 PLEASE SCROLL DOWN FOR ARTICLE Taylor & Francis makes every effort to ensure the accuracy of all the information (the “Content”) contained in the publications on our platform. However, Taylor & Francis, our agents, and our licensors make no representations or warranties whatsoever as to the accuracy, completeness, or suitability for any purpose of the Content. Any opinions and views expressed in this publication are the opinions and views of the authors, and are not the views of or endorsed by Taylor & Francis. The accuracy of the Content should not be relied upon and should be independently verified with primary sources of information. Taylor and Francis shall not be liable for any losses, actions, claims, proceedings, demands, costs, expenses, damages, and other liabilities whatsoever or howsoever caused arising directly or indirectly in connection with, in relation to or arising out of the use of the Content. This article may be used for research, teaching, and private study purposes. Any substantial or systematic reproduction, redistribution, reselling, loan, sub-licensing, systematic supply, or distribution in any form to anyone is expressly forbidden. Terms & Conditions of access and use can be found at http:// www.tandfonline.com/page/terms-and-conditions

Native Hawaiian Women and the Experience of Breast Cancer

  • Upload
    phyllis

  • View
    213

  • Download
    1

Embed Size (px)

Citation preview

This article was downloaded by: [Widener University]On: 24 April 2014, At: 22:46Publisher: RoutledgeInforma Ltd Registered in England and Wales Registered Number: 1072954 Registered office: Mortimer House,37-41 Mortimer Street, London W1T 3JH, UK

Women & HealthPublication details, including instructions for authors and subscription information:http://www.tandfonline.com/loi/wwah20

Native Hawaiian Women and the Experience of BreastCancerPhyllis Eide PhD and MPH and MS and APRN and BC aa Washington State University Intercollegiate College of Nursing , 2917 West Fort GeorgeWright Drive, Spokane, WA, 99224 E-mail:Published online: 22 Sep 2008.

To cite this article: Phyllis Eide PhD and MPH and MS and APRN and BC (2007) Native Hawaiian Women and the Experience ofBreast Cancer, Women & Health, 44:4, 41-59

To link to this article: http://dx.doi.org/10.1300/J013v44n04_03

PLEASE SCROLL DOWN FOR ARTICLE

Taylor & Francis makes every effort to ensure the accuracy of all the information (the “Content”) containedin the publications on our platform. However, Taylor & Francis, our agents, and our licensors make norepresentations or warranties whatsoever as to the accuracy, completeness, or suitability for any purpose of theContent. Any opinions and views expressed in this publication are the opinions and views of the authors, andare not the views of or endorsed by Taylor & Francis. The accuracy of the Content should not be relied upon andshould be independently verified with primary sources of information. Taylor and Francis shall not be liable forany losses, actions, claims, proceedings, demands, costs, expenses, damages, and other liabilities whatsoeveror howsoever caused arising directly or indirectly in connection with, in relation to or arising out of the use ofthe Content.

This article may be used for research, teaching, and private study purposes. Any substantial or systematicreproduction, redistribution, reselling, loan, sub-licensing, systematic supply, or distribution in anyform to anyone is expressly forbidden. Terms & Conditions of access and use can be found at http://www.tandfonline.com/page/terms-and-conditions

Native Hawaiian Womenand the Experience of Breast Cancer

Phyllis Eide, PhD, MPH, MS, APRN, BC

ABSTRACT. This article describes a qualitative inquiry into the expe-riences of Native Hawaiian women living through and beyond a diagno-sis of breast cancer. Native Hawaiian women have increased incidenceand mortality breast cancer rates compared with other ethnic groups inHawaii. Health promotion programs targeted at Native Hawaiians haveoften failed because of cultural inappropriateness. A lack of knowledgeabout the culture is frequently a part of this failure. Therefore, the spe-cific purpose of this study was to examine the lived experience of a se-lected group of Native Hawaiian breast cancer survivors, uncover theconnections between their narratives and their personal and culturalmilieux, and generate knowledge about the Native Hawaiian woman’sbreast cancer experience that would be useful in planning future healthpromotion outreach efforts. The study consisted of interview data col-lected from 11 Native Hawaiian female participants, ranging from 44 to82 years of age. An interpretive phenomenological analysis of the dataidentified recurrent contexts and themes. The three major contexts intheir stories were discovery, transformation (physical, emotional and spir-itual), and life realignment. Themes included the importance of spiritualconnection, an altruistic desire to reach out and assist others in a similarsituation, and a context of familial silence about cancer history. Theseelements can assist in formulating health promotion and intervention ac-tivities for this population. Interwoven with these themes was the NativeHawaiian concept of pono–a sense of rightness and balance, and the

Phyllis Eide is Assistant Professor of Nursing, Washington State University Inter-collegiate College of Nursing, 2917 West Fort George Wright Drive, Spokane, WA99224 (E-mail: [email protected]).

Women & Health, Vol. 44(4) 2006Available online at http://wh.haworthpress.com

© 2006 by The Haworth Press, Inc. All rights reserved.doi:10.1300/J013v44n04_03 41

Dow

nloa

ded

by [

Wid

ener

Uni

vers

ity]

at 2

2:46

24

Apr

il 20

14

crucial importance of the participants’ Native Hawaiian identity and cul-tural heritage. doi:10.1300/J013v44n04_03 [Article copies available for afee from The Haworth Document Delivery Service: 1-800-HAWORTH. E-mailaddress: <[email protected]> Website: <http://www.HaworthPress.com> 2006 by The Haworth Press, Inc. All rights reserved.]

KEYWORDS. Native Hawaiian women, breast cancer, cultural appro-priateness, spiritual connections, helping others, qualitative research

INTRODUCTION

Native Hawaiian women have increased breast cancer incidence andmortality rates compared with other ethnic groups in Hawaii (Tsark &Braun, 2001). Culturally congruent care is essential in reducing healthdisparities among cultures. However, health promotion programs tar-geted at Native Hawaiians have often failed in the past because of cul-tural inappropriateness (Matsunaga et al., 1996; Blaisdell, 1989). Thisarticle describes a qualitative inquiry into the experiences of 11 NativeHawaiian women living through and beyond a diagnosis of breast can-cer, whose voices have rarely been heard in previous research. Thethemes that emerge from their stories could inform health care plannersand providers as they seek to reduce the devastating impact of breastcancer mortality in Native Hawaiian women through early detection.

Breast cancer is the most frequent solid tumor diagnosis in the UnitedStates, and is second only to lung cancer in cancer mortality (Edisonet al., 1994; Boyer-Chammard, Taylor, & Culver, 1999). U.S. statisticsfor female invasive breast cancer for the years 1997-2001 show an inci-dence of 132.2 per 100,000, and a mortality rate of 27.0 per 100,000. Anestimated 212,920 new cases of invasive breast cancer and 40,970breast cancer caused deaths among U.S. women are anticipated in 2006(American Cancer Society, 2006).

The breast cancer statistics from minority populations add anotherlayer of complexity. American Cancer Society’s 2006 publication Can-cer Facts and Figures reported that from 1998-2002, the incidenceof breast cancer was 141.1 per 100,000 for white women, 119.4 forAfrican American women, 96.6 for Asian American and Pacific Islanderwomen, 89.9 for Hispanic women, and 54.8 for American Indian/Alaska Native women. In the general U.S. population, African American,Hispanic, and American Indian women have a lower survival rate thando their white counterparts (Ghafoor et al., 2003; Gloeckler Ries et al.,2003; Li, Malone, & Daling, 2003).

42 WOMEN & HEALTH

Dow

nloa

ded

by [

Wid

ener

Uni

vers

ity]

at 2

2:46

24

Apr

il 20

14

In a three-year study involving a multiethnic cohort of 88,712 post-menopausal women in Hawaii and Los Angeles, Native Hawaiianwomen were found to have a 65% greater risk of developing cancer thandid the white participants in the study (Pike et al., 2002). A second studyof nearly 125,000 women representing all the major racial/ethnic popu-lations and subpopulations in the U.S. found that Japanese and Chinesewomen had better survival rates after breast cancer than white women,while Native Hawaiian and Hispanic women had survival rates 30%poorer (Li et al., 2003).

Native Hawaiian women continue to have breast cancer mortalityrates that are considerably higher than those of white women (Gotayet al., 2000; Maskarinec, 1996). Between 1986 and 1990, breast cancermortality rates in Hawaii were 25% higher for Native Hawaiians thanfor whites, who ranked second, and 106% higher than for Chinese, whoranked third (Tsark & Braun, 2001).

The breast cancer incidence rate for Native Hawaiian women resid-ing in Hawaii between 1995-2000 was 162.4 per 100,000, comparedwith 149.6 for Caucasians, 133.2 for Japanese, 109.8 for Chinese, and93.1 for Filipinos (American Cancer Society, 2006; Hawai’i Pacific,Inc., 2003). These represent the most recent statistics available for thispopulation (J. Tsark, personal communication, July 12, 2006). Age-adjusted rates of invasive cancer for women in the SEER (Surveillance,Epidemiology and End Results) regions are highest for white, NativeHawaiian, and black women (Miller et al., 1996). In data analyzedfrom 1995-2000, Native Hawaiian women had the highest age-adjustedmortality rates for breast cancer among all ethnic groups in Hawaii(31 per 100,000, compared with 25.4 for whites, 14.9 for Chinese, 14.2for Filipinos, and 12.2 for Japanese) (American Cancer Society, Hawai’iPacific, Inc., 2003).

NATIVE HAWAIIAN HEALTH RISK FACTORS

In an analysis of SEER incidence and survival data from 1988 to1992 for both men and women, five-year survival for all cancerscombined was 10 percentage points lower for those living in poorer cen-sus tracts than for those in more affluent areas (Ward et al., 2004). Therelatively low socioeconomic status of many Native Hawaiians is a riskfactor for poorer health. In 2000, 19.1% of Native Hawaiians in Hawaiilived at or below the poverty level, compared with 14.1% of the state’soverall population (Office of Hawaiian Affairs, 2004).

Phyllis Eide 43

Dow

nloa

ded

by [

Wid

ener

Uni

vers

ity]

at 2

2:46

24

Apr

il 20

14

Poverty can also contribute to poor diet. Scientific evidence suggeststhat about a third of U.S. cancer deaths every year are due to diet andphysical activity factors, including obesity (American Cancer Society,2006). The Native Hawaiians’ encounter with the “traditional” Westerndiet, especially canned and preserved food high in fat and calories, aswell as fast food, resulted in their having the highest prevalence of obe-sity in Hawaii (Bureau of Primary Health Care, 2006). Diet may be asignificant contributor to Native Hawaiian women’s elevated breastcancer rates.

In Hawaii, roughly 40% of the differences between the ethnic groupswith the highest and lowest survival probability with breast cancer isexplained by stage at diagnosis (Meng, Maskarinec, & Wilkens, 1997a).Early detection and subsequent treatment are critical to ensuring the bestpossible outcome from breast cancer. Failure to obtain timely and rou-tine screening, usually via mammography or breast self-exam, can leadto poorer outcomes. Native Hawaiians and Filipinos in Hawaii are mostlikely to be diagnosed with cancer at a late stage (Meng, Maskarinec, &Wilkens, 1997a; Meng, Maskarinec, & Lee, 1997b).

Minority populations face many obstacles to obtaining appropriatecancer screening, including barriers created by their perceptions ofscreening. A study of mammography and African American womenfound that age group, previous instruction in mammography, income,and perceived barriers explained 15% of the variance in age-relatedmammography rates (Phillips & Wilbur, 1995).

Personal influence of opinion leaders, combined with interpersonalcontacts that encourage preventive care, can help influence womento participate in mammography (Williams, Abbott, & Taylor, 1997).Pearlman et al. (1997) found that a woman may view screening nega-tively if members of her social network think it unnecessary and are dis-couraging, or if she feels her doctor’s opinion is not important or onlysomewhat important.

Native Hawaiian women were least likely of all ethnic minoritygroups in Hawaii to have received a mammogram within the previoustwo years (Serxner & Chung, 1992). In focus groups, rural NativeHawaiian and Filipino women revealed that the cost of screening,embarrassment, the perceived pain of undergoing a mammogram, andthe fear of finding a malignancy were elements in their decisions not topursue early detection activities (Harris, 1997). Similar issues havebeen reported in other studies of minority women and breast cancer(Rahman, Mohamed, & Dignan, 2003; Phillips, Cohen & Moses, 1999).

44 WOMEN & HEALTH

Dow

nloa

ded

by [

Wid

ener

Uni

vers

ity]

at 2

2:46

24

Apr

il 20

14

Health promotion programs targeted at Native Hawaiians have oftenfailed in the past because of cultural inappropriateness (Matsunaga et al.,1996; Blaisdell, 1989). The responses found in the Harris (1997) studypoint to the need to incorporate culturally sensitive approaches for cancereducation and screening. A positive example was found in an approachthat used existing Hawaiian social networks to disseminate cancer infor-mation. That study’s small group approach built on traditional Hawaiianvalues of ‘ohana (family) and kokua (helping without being asked)(Banner et al., 1995). Unfortunately, much of the qualitative data that wasgathered, was not incorporated in subsequent publications from the study(D. Matsunaga, personal communication, March 24, 1998).

The current study was developed to gain insight into the lived experi-ences of Native Hawaiian women as they were diagnosed with breastcancer, made decisions regarding treatment, and moved toward the goalof survivorship within the context of their unique cultural background.The knowledge generated by this type of inquiry can assist in the devel-opment of culturally appropriate early prevention strategies for thispopulation, and contribute to health care practitioners’ understanding ofthe Native Hawaiian woman’s breast cancer journey.

DESIGN AND METHODS

The study used a descriptive design involving individual participantinterviews based on a theoretical perspective of interpretive phenomen-ology, which encompasses the “goal of studying persons, events, andpractices in their own terms” (Benner, 1994, p. 99).

Aims: The specific aims and research questions of the inquirywere to:

Explore Native Hawaiian women’s experiences of survivingbreast cancer, including the processes of diagnosis, explorationof options, treatment decisions, and cultural influences on thesedecisions.Question: What was the experience of surviving breast cancerlike for Native Hawaiian women?Identify specific cultural themes that were reflected in the partic-ipants’ experiences of breast cancer survivorship.Question: What recurrent cultural themes emerged from thewomen’s stories? More specifically, did these themes representcultural influences that affected treatment decisions and optionsfor care?

Phyllis Eide 45

Dow

nloa

ded

by [

Wid

ener

Uni

vers

ity]

at 2

2:46

24

Apr

il 20

14

Methodology

Interpretive phenomenology, as described by Benner (1994), wasused to pursue these aims. This methodology addressed and connectedissues of cultural context, personal narrative, and situatedness. Theseelements are essential to Native Hawaiian culture. The investigator (or“interpreter” in Benner’s description) seeks to hear and understand thevoices of the participants, and moves through progressive understand-ings of the participants’ experiences with repeated readings of the textsand writing of interpretations that evolve over time (Benner, 1994).

Sample

Following institutional review board approval of the study protocol,11 Native Hawaiian women were recruited to participate in the study.The criteria for eligibility included those able to receive health servicesfrom the local federally funded Native Hawaiian health clinic (HuiMalama Ola Na ‘O’iwi, n.d.). Enrolling for services from Hui Malamaentails a self declaration on the clinic registration form (available at theHui Malama Ola Na ‘O’iwi website), that the applicant is NativeHawaiian or part Native Hawaiian (or the spouse of such a person). Inthe case of the current study, all participants met this criterion throughtheir own ancestry. A diagnosis of breast cancer by biopsy with norecurrence at the time of recruitment was an additional inclusion crite-rion. Ten participants were from rural areas of Hawaii Island, while oneparticipant was from the more urban O’ahu.

Initial efforts to recruit participants via usual avenues, such as fliersand presence at local health fairs, failed to yield any participants. Aturning point occurred when the Hui Malama Ola Na 'O’iwi clinic nursein the Kona office became involved with recruitment Through thisnurse’s knowledge and connection to her patients, she was able to facili-tate initial contacts and vouched for the researcher’s intent and purpose.Her efforts yielded the most participants (7). The one O’ahu participantwas recruited by another study participant, and the other 3 memberswere recruited through personal contacts of nurses and key informantsfrom the Native Hawaiian culture.

Procedure

Each interview lasted between 45 and 60 minutes. Informed consentwas obtained prior to interviews, at which time the participant was

46 WOMEN & HEALTH

Dow

nloa

ded

by [

Wid

ener

Uni

vers

ity]

at 2

2:46

24

Apr

il 20

14

given a verbal and written description in English of the study’s goals,and purpose. All participants were interviewed separately.

To answer the question from Aim #1 (“What is the experience of sur-viving breast cancer like for Native Hawaiian women?”) each womanwas asked to share her breast cancer story (“Tell me about your breastcancer”), and was allowed to shape the chronology, events, and interpre-tations surrounding her cancer experience as she recalled it. This approachis congruent with accepted Hawaiian social norms of informality, whichinclude the concept of “talk story” (sharing of stories and thoughts ininformal social interaction) (Talk Story, n.d.). Secondary probes wereused for clarification only if the story became unclear, or if new ele-ments were interjected that did not seem to mesh with the story to thatpoint. The questions associated with Aim #2 (What recurrent culturalthemes emerged from the women’s stories? More specifically, did thesethemes represent cultural influences that affected treatment decisionsand options for care?), are addressed in the Discussion section of thisarticle. The interviews were audio taped and professionally transcribed.

Data Analysis

The transcriptions were initially read by the investigator for verifica-tion of accuracy against the audiotaped interviews, and then re-read aminimum of twice in regular narrative format. Text sections were high-lighted wherever the participant spontaneously changed the direction orsubject of the conversation, which signaled the emergence of a newtheme, These initial themes were put on 3�5 note cards and reviewedfor commonalities and similarities across all cases. They were thensorted into categories, and combined and condensed to yield the overallcontexts Using the Atlas Ti computer program (Muhr, 1997), the appro-priate text sections were linked with each specific theme and context.Benner (1994) characterized this thematic analysis process as the clari-fication of distinctions and similarities across cases, thus permitting theinterpreter to engage in cycles of understanding, interpretation, and cri-tique. Throughout this process, the investigator was the sole personengaged in the analysis process, with intra-rater reliability addressedthrough a consistent approach to the reading and evaluating of each text.Morse (in Denzin & Lincoln, 1994) supports the role of the individualrater in the analysis process, claiming that more than one researcherreading and coding the same texts violates the process of inductionsince the initial investigator has a bank of knowledge from conducting

Phyllis Eide 47

Dow

nloa

ded

by [

Wid

ener

Uni

vers

ity]

at 2

2:46

24

Apr

il 20

14

other interviews and from observations that the second researcher doesnot (p. 231).

Pelusi (1997) described the trajectory of breast cancer as a journey.The emerging themes in this study were grouped into three organizing“contexts” that paralleled the “journey” metaphor: discovery, transfor-mation, and life realignment. Each context contained several themes(see Table 1).

RESULTS

The participants ranged from 44 to 82 years of age. Four were mar-ried, three widowed, three divorced, and one was separated. They hadbeen diagnosed with breast cancer by biopsy from 1 to 19 years beforethe study, and had undergone a variety of treatments, including surgery,chemotherapy, and radiation.

Context of Discovery

In the context of “Discovery,” participants dealt with unexpectedand sometimes accidental discoveries of breast abnormalities and

48 WOMEN & HEALTH

TABLE 1. Contexts and Themes

Contexts Themes

Context of discovery • Limited communication from family about cancer

• Message from her body that the womancannot ignore

• Western medicine as the treatment of choice

Context of transformation:physical, emotional and spiritual

• Body transformation changes during the fightagainst the cancer

• Increased appreciation for and participation inmatters of the spirit

• Positive and negative connections with others,especially family members

• Efforts to normalize life

Context of life realignment:regaining pono (balance)

• Challenge to previously held certainties, andchanges in priorities

• A desire to reach out to others in similarsituations and help

Dow

nloa

ded

by [

Wid

ener

Uni

vers

ity]

at 2

2:46

24

Apr

il 20

14

subsequent diagnoses of malignancy. The theme of communication con-tained a frequent finding of familial silence or ignorance of cancer his-tory, which complicated the situation for participants and led to theirown “blinders” about their potential risk for breast cancer.

My grandma’s two sisters also had breast cancer . . . and I mean, Iknow they weren’t bad people but they didn’t share.

I found out that Auntie M. developed the cancer in her breast whenthe daughter was in church and asked for prayers for the mom . . .But before days, you know, everything is kept [within]. That’swhy my auntie is so private, you know.

In the second theme, however, the body finally sends a message tothe woman that she cannot ignore.

I had a nipple that was pointing down a little. I thought that it wasold age sagging . . . and then I felt the lump when I was taking ashower, so then I got real scared.August, I started to get sick a lot . . . I was in denial . . . I was havinga discharge, brownish discharge. I would say, oh, it’s just dirt be-cause I was doing a lot of yard work here.

One participant was moved to action by her sister’s diagnosis.

About 1993, my younger sister found a lump in her breast [that]within a month tripled its size. In fact, it just grew very quickly. SoI thought gee, I better go check myself again.

A third theme was the seeking of Westernized approaches to treatingthe cancer, which were the first choice of all 11 participants.

My surgeon, he’s so nice; I put my trust in him because a lot oftimes I know what’s going on but I kind of leave it in his hands.I really like Dr. R. because he doesn’t hold anything back, whichwas kind of scary at first but I’m not like a person who wants themto hide information.Even though they’ve never had breast cancer, to me they can reallyfeel compassion and–it’s almost like they know where you’recoming from. You know, I guess they see so many, yeah? I find alot of strength from my doctors and nurses.

Phyllis Eide 49

Dow

nloa

ded

by [

Wid

ener

Uni

vers

ity]

at 2

2:46

24

Apr

il 20

14

Context of Transformation:Physical, Emotional and Spiritual

The second context, “Transformation: physical, spiritual, and emo-tional” was marked by several themes, the first of which was the bodilychanges in the fight against breast cancer.

By the second treatment my hair was falling out. [The onc-ologist] advised me to just shave ‘em off. Oh, you know, younever want to shave off your hair, you know. So my niece, shewould come and she did it. She didn’t want to but she did it causeI asked her, yeah?

Yeah, it’s a really hard with the hair falling out. Oh, that was trau-matic. One day when my second daughter came home from school,I said, hey, come and help me, I gotta do something. So I went up-stairs into my room and I started shaving off the top of my hair. Allof a sudden I happened to catch my daughter’s reflection in themirror. Her eyes were wide open and she was crying. I stopped andcomforted her. I said, you know, what more better way to do it thanto have my daughter, my own support, around me to help me. Isaid we’ve got to help each other through this because I don’tknow what’s to come.

A second theme involved the participants’ increased appreciation forand participation in matters of the spirit.

I took it very well. And being a Christian woman, I just said, well,if it’s the will of God, so be it.

I always remember to pray to my ancestors, also my guardian [an-gel] we call the ‘aumakua. I think that’s what gives me strengthtoo. I pray. I never stop worship.

I’m here a little while longer for a purpose. And then when He’sready, He knows where to come. He knows where to find me, youknow.

The third theme entailed the critical role of nurturing and supportiveconnections between people (and the negative elements that impedehealing).

50 WOMEN & HEALTH

Dow

nloa

ded

by [

Wid

ener

Uni

vers

ity]

at 2

2:46

24

Apr

il 20

14

I got in touch with the kahu [minister] of my church. He and thecongregation were wonderful. So everybody kokua [help].

Sometimes family members had a difficult time adjusting to the par-ticipant’s physical changes.

[My children] were kind of ashamed of me. My youngest boy usedto play baseball. When we’d come down for his baseball games,the girls would see me getting into the car and they’d tell me,Mom, cover your head. But I’m going . . . it’s so hot. I’m gonna beso hot. He’s going but, Mom, your head is bald. And I said, so, is-n’t it nice? And they go, no, but . . . I don’t know if they wereashamed of me. I didn’t want to go into it too much with them, youknow. I just did as they wanted.

In a related theme, participants would often develop personal strate-gies and activities to attempt to normalize their life experiences.

I did my chores, helped my husband. I still worked on the ranchwith him.When I would go for my therapy in Kona, I would wear my scarfand then I’d wear my hat with feathers to match whatever I waswearing. Cause that’s the way I used to dress when I was working.

Context of Life Realignment: Regaining Pono (Balance)

Pono is a Native Hawaiian concept that implies a state of balancethroughout all areas of life. Some meanings associated with ponoinclude goodness, upright, just, virtuous, fair, and hope (Pukui & Elbert,1986). Based on analysis of the participants’ narratives, regaining ponowas central to the final context of “Life realignment.”

The first theme in this context was that undergoing the cancer experi-ence challenged participants to face changes in priorities and previouslyheld certainties.

So, that’s a good side of the cancer that I liked–[the] change of pri-orities right off the bat. You find out what is really important. Nowmy most important priority almost two years later is my boys andmy family.

Phyllis Eide 51

Dow

nloa

ded

by [

Wid

ener

Uni

vers

ity]

at 2

2:46

24

Apr

il 20

14

My husband was very supportive. He felt it was better to have methan my breast. It’s a very traumatic experience to lose that part ofyour body because you’re thinking it’s a part of your femininity.But life is more important. And that’s what we felt.I was one who never took my vitamins. I would never take time formyself. So I learned after this. And now I try to take vitamins. AndI try to drink green tea. And eat better. I try to take better care ofmyself.

A second theme was a consistent desire to focus outward on helpingothers who might be facing the same situation.

A lot of times, things would be going on [and] I would just kind ofdissociate, that’s how the lifestyles are nowadays, yeah? But nowthis breast cancer issue and stuff, I figured I could sit back or I cando something, I could make a difference. I’d rather make a differ-ence. I don’t want to sit back.I like to share my story because I want to help [my young nieces]. Idon’t want to be like my other aunties who [didn’t share]. I guessI’m the spokesperson of our family now. I volunteered for this be-cause I [want to] help anybody–any Hawaiian women and not onlyHawaiian women, you know.Last year, [at an American Cancer Society fundraiser], I was askedto do the pule [prayer]. Before I said my prayer, I said I would like tomention that I am a cancer survivor. There was a lot of, [intake ofbreath] . . . you know. People surprised . . . Maybe some peopleare, they don’t want to talk about it. I’m going to mention [my ex-perience] so that they feel comfortable so they can talk about it.If I could help another woman not go through that same trauma,you’re damn right I’m going to do something. It could be my owndaughter. It could be [another] sister. It could be my good friend.I’m not going to let it happen. If out of ten women, one person willlisten to me, my job is done. I just want to spare [them] the trauma.

These comments match information in cancer survivor literaturethat identifies members of ethnic minority and medically underservedcommunities as valuable resources in reaching others with cancer.Survivors can inform newly diagnosed cancer patients about the com-plicated choices they face, provide support, take the stigma out of the

52 WOMEN & HEALTH

Dow

nloa

ded

by [

Wid

ener

Uni

vers

ity]

at 2

2:46

24

Apr

il 20

14

diagnosis, and help them understand that their psychological reactionsto the diagnosis are normal (Haynes & Smedley, 1999).

Participants also drew strength from their cultural heritage as NativeHawaiians, an identification that often grew stronger in adulthood.

To me, my culture . . . made a lot of difference. I usually go to thevolcano and sit there meditating and ask for help or anything. I be-lieve in that, in my culture. Our way of life . . .When I was growing up, the Hawaiian culture was quite nonexis-tent. After the resurgence of 10, 15 years ago, it became more pop-ular and more emphasized and I learned more since then.

DISCUSSION

All three contexts that emerged from this process centered on thebroad Hawaiian concept of regaining life balance or pono (Pukui &Elbert, 1986). The concept of pono is incorporated into the phrase com-monly heard in Hawaii, “restoration of pono,” as associated with theactions and claims of Native Hawaiians in the sovereignty movement. Itimplies a return to a balance of rightness and a restoration of hope. Thisinterpretation and application of the term pono seems most appropriatefor this analysis. Hydén (1995) has described illness as a disruptive lifeevent that directly challenges the individual to confront the question ofnot only what has happened, but why and how it will impact the unity ofhis or her life. For each participant in this study, the diagnosis and treat-ment of breast cancer challenged her to reconstruct her life narrative.

In answer to Aim #2’s question (What recurrent cultural themesemerged from the women’s stories? More specifically, did these themesrepresent cultural influences that have affected treatment decisions andoptions for care?), a recurrent theme found in all participants’ storieswas their identification with their Native Hawaiian roots. Despite varia-tion in their family histories and personal experiences, all of the partici-pants indicated that their culture provided their identity and source of“grounding.”

The researcher’s initial assumption that participants might engage inparallel interventions in the Western medical model and in NativeHawaiian healing approaches was not supported. Participants soughtinitial interventions based on the Western medical model. Reliance onthis approach was reinforced by fear and uncertainty about the cancer,

Phyllis Eide 53

Dow

nloa

ded

by [

Wid

ener

Uni

vers

ity]

at 2

2:46

24

Apr

il 20

14

and by previous positive experiences with physicians and other healthcare workers.

In some instances, participants sought to supplement their medicaltreatment by herbal or spiritual practices that they did not perceive asinterfering with their course of treatment by their oncologist. NativeHawaiian healing methods, such as herbal medicine (la’au lapa’au)were alluded to in only a few cases, often with the regret that this knowl-edge died with their grandparent, or that they did not have this knowledgein their family. One participant reported using noni juice with reluc-tance (because of its noxious smell), only after a relative gave her somewith the expectation that she drink it for its healing properties. Anotherparticipant linked the Native Hawaiian practice of ho’oponopono (con-flict resolution) to the decrease of interpersonal stress, which she saw aslinked to her cancer. A third participant did personal adaptations of hulamovements as post-mastectomy exercises, rather than the usual onestaught by American Cancer volunteers. She felt that her exercises ful-filled the same goals while being more culturally relevant and appropriate.

The researcher’s position as someone from outside the culture mayhave influenced the participants’ narratives. The possibility exists thatparticipants may have sought complementary alternative healing meth-ods from within their culture, but did not disclose this, based on a reluc-tance to share with someone who represents what may be perceived asthe Western medicine model. Replication of this study using interview-ers with a Native Hawaiian background would be of interest to see ifdifferences emerge in the narratives regarding use of Native Hawaiianhealing methods.

Participants reported the emotional impact of the visible body changeslinked to surgical intervention and post surgical chemotherapy and radi-ation, and the effect that this ongoing reminder had on their lives andfamilies. This finding was echoed in a survey of 223 breast cancer survi-vors in which 64% of respondents indicated that they had emotionalneeds or concerns about breast cancer that they wanted to talk aboutfrom time to time (Polinsky, 1994).

Mishel and Braden (1987) found that a major function of social sup-port was to provide a chance for the patients to clarify their situationsthrough discussion and interaction with others. One participant in thecurrent study had a need to connect so compelling that she would shareabout her cancer at Alcoholics Anonymous meetings, even thoughshe knew that it was not an appropriate venue. Others reported activitiessuch as striking up waiting-room conversations with other women whowere seeing the same oncologist, reaching out to co-workers to encourage

54 WOMEN & HEALTH

Dow

nloa

ded

by [

Wid

ener

Uni

vers

ity]

at 2

2:46

24

Apr

il 20

14

them to seek breast cancer screening and offering support to those whohad also been diagnosed and treated with breast cancer.

Spirituality as it relates to breast cancer survivorship is well-docu-mented (Fredette, 1995; Thibodeau & MacRae, 1997; Webb & Koch,1997). These studies found that breast cancer heightens feelings of spir-ituality and harmony with nature, in which increased attention to spiri-tual dimensions of life contributes to the coping ability of the breastcancer patient. In the current study, participants reported that spiritualissues and concerns became more prominent in their lives, and prayerwas frequently mentioned as a daily source of solace and support.

Efforts to normalize life centered on family life, maintenance of reg-ular activities, and presentation of personal appearance as unchangedthrough the use of prosthesis and breast reconstruction. Another aspectof coping that has been documented in the literature is information seeking(Fredette, 1995). During the context of transformation, several of theparticipants tried to learn more about their cancer, and expressed a needto reach out to give and receive support.

In the final context of life realignment, a measure of pono (balance)was restored to the participants through realization of new opportunitiesto experience life, a reordering of priorities, and a sense of missionrelated to others with cancer. Concerns for other women (Thibodeau &MacRae, 1997) and sense of altruistic “giving to others” (O’Connor &Wicker, 1995) by breast cancer survivors were also found in the currentstudy. Continuing uncertainty about the possibility of recurrent cancerlent a certain edge to the participants’ view of the future, and providedthe inspiration to live fully in each moment.

Limitations of the Study

This qualitative study represented the experiences of 11 NativeHawaiian women with prior breast cancer. The sample size, while admit-tedly small, is not unusual for qualitative studies for which the goal is notgeneralizability to the larger population, but rather to capture a sense ofthe essence of the phenomena (Sandelowski, 1993). A typical samplesize for a phenomenological study is approximately six participants,depending on the saturation of the data (Denzin & Lincoln, 1994, p.225). An appropriate criterion of qualitative rigor as described by Madi-son (in Benner, 1994) is that of “comprehensiveness,” which addressesthe contextual “situatedness” and temporality of the account, and givesthe reader a “sense of the whole.” The interpretive phenomenological

Phyllis Eide 55

Dow

nloa

ded

by [

Wid

ener

Uni

vers

ity]

at 2

2:46

24

Apr

il 20

14

approach excels in concentrating the participants’ experiences throughthematic elements and exemplars in ways that convey this wholeness.

The researcher also acknowledges that because she was not a part ofthis cultural group, she undoubtedly encountered a different range ofresponses than if she were herself a Native Hawaiian. Another study uti-lizing a Native Hawaiian nurse researcher working with this populationwould be of interest to identify possible differences in data and resultantthemes.

Finally, the efforts by the Native Hawaiian health clinic nurse torecruit participants to this study may have introduced selection bias tothe process, based on the geographically limited population with whichshe worked. Thus, the study was further limited by the lack of selectionof a representative sample of Native Hawaiian women. As all of thestudy participants either resided in rural or suburban areas of HawaiiIsland or Oahu, urban Native Hawaiian women were under-represented.Future studies should recruit a more representative sample so as to beable to compare the experiences of rural, semi-rural, and more urbangroups.

This nurse’s own personal connections to the participants throughinteracting with them over extended periods of time may also have cre-ated a biasing effect when deciding who might be receptive to joiningthis study. It also might have minimized the inclusion of women withdiffering experiences or views.

In summary, use of interpretive phenomenology allowed this researchstudy to put a human face on the alarming statistics for Native Hawaiianwomen and breast cancer through attentive listening to survivor/partici-pants’ stories. The cohort of participants shared core values related topersonal and spiritual growth, outreach to others at risk for breast can-cer, and a determination to live life more fully in the face of a height-ened sense of mortality.

IMPLICATIONS FOR HEALTH PROMOTION

Health care providers working with Native Hawaiian breast cancerpatients need to recognize the potential for limited intra-family commu-nication about the cancer history of relatives, as the newly diagnosedbreast cancer patient may be unaware of such history. Providers alsoneed to be sensitive to patients’ potential spiritual needs, and offer anatmosphere where the patient can express these needs, as well as pro-viding resources for those seeking help. Such help could range from

56 WOMEN & HEALTH

Dow

nloa

ded

by [

Wid

ener

Uni

vers

ity]

at 2

2:46

24

Apr

il 20

14

guided imagery and meditation, to formal organized religious groups, toreconnection with traditional spiritual values and beliefs. Early detec-tion activities and education about breast cancer for Native Hawaiianwomen can be enhanced by recruiting Native Hawaiian breast cancersurvivors for outreach, based on study results indicating a strong altruisticdesire to help others among these women.

In conclusion, the stories of these participants provided compellingevidence for the resilience of the human spirit. Their accounts reflecteda variety of backgrounds and life circumstances, but a united desire tohelp other Native Hawaiian women find the path to early detection andtreatment of breast cancer, and the restoration of pono in the face ofunforeseen life challenges.

REFERENCES

American Cancer Society, Hawai’i Pacific, Inc. (2003). Hawai’i Cancer Facts & Fig-ures 2003-2004. Honolulu, Hawaii: Author.

American Cancer Society (2006). Cancer Facts & Figures–2006. Retrieved July 14,2006, from http://www.cancer.org/downloads/STT/CAFF2006PWSecured.pdf

Banner, R., DeCambra, H., Enos, R., Gotay, C., Hammond, O.W., & Hedlund, N.(1994). A breast and cervical cancer project in a Native Hawaiian community:Wai’anae Cancer Research Project. Preventative Medicine, 24, 447-453.

Benner, P. (1994). Interpretive phenomenology: Embodiment, caring and ethics inhealth and illness. Thousand Oaks, CA: Sage Publishers.

Blaisdell, K. (1989). Historical and cultural aspects of Native Hawaiian health. InE.L. Wegner (Ed.), Social process in Hawaii: Vol. 32. The health of Native Hawai-ians: A selective report on health status and health care in the 1980’s. Honolulu:University of Hawaii at Manoa.

Boyer-Chammard, A., Taylor, T., & Anton-Culver, H. (1999). Survival differences inbreast cancer among racial/ethnic groups: A population-based study. Cancer Detec-tion and Prevention, 23(6), 463-473.

Bureau of Primary Health Care (2006). Native Hawaiian Health Care Program. Re-trieved July 14, 2006, from http://bphc.hrsa.gov/programs/hawaiian.htm

Denzin, N. & Lincoln, Y. (Eds.) (1994). Handbook of qualitative research. ThousandOaks, CA: Sage Publishers.

Edison. M., Becker, T., Wiggins, C., Key, C., & Samet, J. (1994). Breast cancer amongHispanics, American Indians and non-Hispanic whites in New Mexico. Interna-tional Jounrnal of Epidemiology, 23(2), 231-237.

Fredette, S.L. (1995). Breast cancer survivors: Concerns and coping. Cancer Nursing,18(1), 35-46.

Ghafoor, A., Jemal, A., Ward, E., Cokkinides, V., Smith, R., & Thun, M. (2003).Trends in breast cancer by race and ethnicity. Cancer: A Cancer Journal for Clini-cians, 53, 342-355.

Phyllis Eide 57

Dow

nloa

ded

by [

Wid

ener

Uni

vers

ity]

at 2

2:46

24

Apr

il 20

14

Gloeckler Ries, L., Reichman, M., Lewis, D., Hankey, B., & Edwards, B. (2003). Can-cer survival and incidence from the Surveillance, Epidemiology, and End Results(SEER) program. The Oncologist, 8, 541-552.

Gotay, C., Banner, R., Matsunaga, D., Hedlund, N., Enos, R., Issell, B., & DeCambra,H. (2000). Impact of a culturally appropriate intervention on breast and cervicalscreening among Native Hawaiian women. Preventive Medicine, 31, 529-537.

Harris, M. (1997). [Breast and cervical cancer control program/East Hawaii–focusgroups]. Unpublished raw data.

Hughes, C. & Aluli, N. (1991). A culturally sensitive approach to health education forNative Hawaiians. Journal of Health Education, 22(6), 387-390.

Hui Malama Ola Na 'O’iwi (n.d.). Client Registration form. Retrieved July 14, 2006,from http://www.huimalamaolanaoiwi.org/.

Hydén, L. (1995). In search of an ending: Narrative reconstruction as a moral quest.Journal of Narrative and Life History, 5, 67-84.

Li, C., Malone, K., & Daling, J. (2003). Differences in breast cancer stage, treatment,and survival by race and ethnicity. Archives of Internal Medicine, 163, 49-56.

Maskarinec, G. (1996). Surveillance report for breast and cervical cancer screening inHawai’i. Honolulu, HI: Author.

Matsunaga, D., Enos, R., Gotay, C., Banner, R., DeCambra, H., Hammond, O., et al.(1996). Participatory research in a Native Hawaiian community: The Wai’anaeCancer Research project. Cancer, 78, 1582-1586.

Meng, L., Maskarinec, G., & Wilkens, L. (1997a). Ethnic differences and factors re-lated to breast cancer survival in Hawaii. International Journal of Epidemiology,26, 1151-1158.

Meng, L., Maskarinec, G., & Lee, J. (1997b). Ethnicity and conditional breast cancersurvival in Hawaii. Journal of Clinical Epidemiology, 50, 1289-1296.

Miller, B., Kolonel, L., Bernstein, L, Young Jr., J., Swanson, G., West, D., Key, C.,Liff, J., Glover, C., Alexander, G., et al. (Eds.) (1996). Racial/ethnic patterns ofcancer in the United States 1988-1992 (NIH Pub. No. 96-4104). Bethesda, MD:U.S. Department of Health and Human Services.

Mishel, M. & Braden, C. (1987). Uncertainty: A mediator between support and adjust-ment. Western Journal of Nursing Research, 9(1), 43-57.

Muhr, T. (1997). Atlas Ti (Version 4.1) [Computer software]. Berlin, Germany: Scien-tific Software.

National Cancer Institute (2006). Racial/ethnic patterns of cancer in the United States.Retrieved July 14, 2006, from http://cancer.gov/statistics/cancertype/breast-racial-ethnic

O’Connor, A. & Wicker, C. (1995). Clinical commentary: Promoting meaning in thelives of cancer survivors. Seminars in Oncology Nursing, 11(1), 68-72.

Office of Hawaiian Affairs (2002). Native Hawaiian data book 2002. Retrieved July14, 2006, from http://www.oha.org/pdf/databook_6_02.pdf

Pearlman, D.N., Rakowski, W., Clark, M.A., Ehrich, B., Rimer, B.K., Goldstein, M.G.,et al. (1997). Why do women’s attitudes toward mammography change over time?Implications for physician-patient communication. Cancer Epidemiology Bio-markers & Prevention, 6, 451-457.

58 WOMEN & HEALTH

Dow

nloa

ded

by [

Wid

ener

Uni

vers

ity]

at 2

2:46

24

Apr

il 20

14

Pelusi, J. (1997). The lived experience of surviving breast cancer. Oncology NursingForum, 24, 1343-1353.

Phillips, J., Cohen, M., & Moses, G. (1999). Breast cancer screening and AfricanAmerican women: Fear, fatalism, and silence. Oncology Nursing Forum, 26(3),561-571.

Pike, M., Kolonel, L., Henderson, B., Wilkens, L., Hankin, J., Feigelson, H., et al.(2002). Breast cancer in a multiethnic cohort in Hawaii and Los Angeles. CancerEpidemiology Biomarkers & Prevention, 11, 795-800.

Polinsky, M. (1994). Functional status of long term breast cancer survivors: Demon-strating chronicity. Health and Social Work, 19, 165-173.

Pukui, M. & Elbert, S. (1986). Hawaiian Dictionary: Hawaiian-English, English-Hawaiian. Honolulu, HI: University of Hawaii Press.

Rahman, S., Mohamed, I., & Dignan, M. (2003). Assessment of perceptions related tobreast cancer prevention and behavioral practices in medically underserved women.Journal of Multicultural Nursing & Health, 9(3), 30-39.

Sandelowski, M. (1993). Rigor or rigor mortis: The problem of rigor in qualitative re-search revisited. Advances in Nursing Science, 16(2), 1-8.

Serxner, S. & Chung, C. (1992). Trend analysis of social and economic indicators ofmammography use in Hawaii. American Journal of Preventive Medicine, 8(5),303-308.

Talk Story (n.d.). Retrieved July 11, 2006, from http://www.alohaplentyhawaii.com/talkstory.htm

Thibodeau, J. & MacRae, J. (1997). Breast cancer survival: A phenomenological in-quiry. Advances in Nursing Science, 19(4), 65-74.

Tsark, J. & Braun, K. (2001). Ten-year changes in breast cancer knowledge, attitudesand practices in Native Hawaiian women. Pacific Health Dialog, 8(2), 280-289.

Ward, E., Jemal, A., Cokkinides, V., Singh, G., Cardinez, C., Ghafoor, A., et al. (2004).Cancer disparities by race/ethnicity and socioeconomic status. Cancer: A CancerJournal for Clinicians, 58, 78-93.

Webb, C. & Koch, T. (1997). Women’s experiences of non-invasive breast cancer: Lit-erature review and study report. Journal of Advanced Nursing, 25, 514-525.

Williams, G., Abbott, R., & Taylor, D. (1997). Using focus group methodology to de-velop breast cancer screening programs that recruit African-American women.Journal of Community Health, 22(1), 45-56.

doi:10.1300/J013v44n04_03

Phyllis Eide 59

Dow

nloa

ded

by [

Wid

ener

Uni

vers

ity]

at 2

2:46

24

Apr

il 20

14