Ethnicity and spirituality in breast cancer survivors

Ellen G. Levine & Grace Yoo & Caryn Aviv &

Cheryl Ewing & Alfred Au

Published online: 15 September 2007# Springer Science + Business Media, LLC 2007

AbstractIntroduction Many women are incorporating spirituality asa way of coping with cancer. However, few studies haveexamined the role of spirituality in mood and quality of lifeamong breast cancer survivors from different ethnic groups.Methods One hundred and seventy-five women who hadcompleted treatment for breast cancer participated in in-depth interviews about their experiences. Transcripts wereavailable for 161 women.

Results The majority (83%) of the women talked abouttheir spirituality. The main themes were: (1) God as aComforting Presence; (2) Questioning Faith; (3) Anger atGod; (4) Spiritual Transformation of Self and AttitudeTowards Others/Recognition of Own Mortality; (5) Deep-ening of Faith; (6) Acceptance; and (7) Prayer by Self. Ahigher percentage of African-Americans, Latinas, andChristians felt comforted by God than the other groups.Conclusions These results are consistent with the commonassumption that more African-American and Latinas engagein spiritual activities and that African-Americans are morefatalistic than the other groups. Implications for CancerSurvivors: The present findings suggest that there areseveral dimensions of spirituality experienced among cancersurvivors. For many the trauma of a cancer diagnosis mightdeepen their faith and appreciation of life as well aschanging the way they view at themselves, their lives, andhow they relate to those around them, including God.

Keywords Quality of life . Spirituality . Ethnic differences .

Breast cancer survivors

Introduction

Breast cancer is the most common cancer in women in theUnited States with an estimate of 211,240 new cases peryear [1] and constitutes a major source of medical andpsychological morbidity. Although the overall survival ratefor noninvasive breast cancer is 97% [2] the impact ofmedical treatment can, in some women, lead to poorpsychological adjustment to breast cancer. This in turn,can influence sexual functioning, social relationships, andquality of life [3–13]. In some women these changes oftenpersist longer than the cancer treatments themselves,

J Cancer Surviv (2007) 1:212–225DOI 10.1007/s11764-007-0024-z

This research was supported by Research Infrastructure in MinorityInstitutions (RIMI) grant 5 P20 MD000544-02 from the NationalCenter for Minority Health and Health Disparities, National Institutesof Health, to San Francisco State University.

E. G. Levine (*)BioBehavioral Research Center, San Francisco State University,1600 Holloway Ave. PP750,San Francisco, CA 94132, USAe-mail: elevine@sfsu.edu

G. YooAsian-American Studies, San Francisco State University,San Francisco, CA, USA

C. AvivCenter for Judaic Studies, University of Denver,Denver, CO, USA

C. EwingDepartment of Surgery, University of California San FranciscoComprehensive Cancer Center,San Francisco, CA, USA

A. AuUniversity of California San FranciscoComprehensive Cancer Center,San Francisco, CA, USA

affecting quality of life in the long term [14–16]. Forexample, Arndt and his colleagues [14] followed 314breast cancer patients for 3 years and found that 3 yearsafter diagnosis, physical functioning was similar to thegeneral population, but there were significant differences interms of role, emotional, cognitive, and social functioning.

For many people in the United States, religion andspirituality are a part of their everyday lives [17]. Spiritualityhas been defined as a felt connection with a nonmental,nonemotional, and nonphysical aspect of being [18]. It canbe seen as comprising elements of meaning, purpose, andconnection to a Higher Power or something greater than theself [19, 20]. Researchers make distinctions between internalspirituality and religiosity. Spirituality refers to the sense ofspirituality within an individual person (e.g., faith, hope,meaning, etc.), while religiosity refers to behaviors or ritualsobserved and practiced within an organized religion (e.g.,church attendance, prayer circles, etc.) [17, 21]. Althoughmany studies have used each concept separately [22], somepeople use both spirituality and religiosity and often meshthe two concepts together [21, 23, 24].

Spirituality and cancer

An increasing number of women are incorporating spiritu-ality into their breast cancer treatment along with conven-tional treatments, as a way of coping with having cancer,and as a way to enhance their quality of life after treatmenthas ended [25, 26]. Several studies have also shown thatspirituality can grow as a result of trauma [27]. Spiritualityand prayer have long been used to cope with illness andadversity [28] and are directly related to quality of life [4,15, 29]. For example, Yates et al. [30] surveyed 752 cancerpatients (52% with breast cancer) from all over the UnitedStates and found that 19% used spiritual healing. However,few studies have actually measured the relationshipbetween spirituality and health among cancer survivors[31] and even fewer examine the relationship across diverseethnic groups. In a study of 105 breast cancer patients, 56%prayed or used spiritual healing. Of those women, 34%used these modalities to reduce physical symptoms/sideeffects, 71% to reduce psychological stress, and 47% inorder to gain a feeling of control over their treatment [25].Another larger survey of women in American CancerSociety support groups for women with breast cancerfound that 88% said that spiritual or religious practice wasimportant in coping with their illness [32].

Faith provides emotional support in that a person mightfeel as if he/she could count on God to be there, take care ofhim/her, and guide their doctors. Faith instills hope,optimism, security, peace, serenity, and support [33]. Formany breast cancer patients, spirituality also helps a personfind meaning and control over their illness [32, 34, 35].

Having a sense of meaning and peace has been found to besignificantly associated with both physical and functionalwell-being [28]. Meraviglia [36] surveyed 84 breast cancersurvivors, of which 36% had been diagnosed in the pastyear, 38% had been diagnosed between one to 5 yearspreviously, and 26% had been diagnosed longer than5 years. Over half (51%) of the participants reported thatthey pray three to four times a day, and the majority (71%)felt that they had a close relationship with God. Meaning inlife and prayer were significantly positively related topsychological well-being (r=.66 and .36, respectively).Meaning in life was significantly and negatively related tosymptom distress (r=!.27).

Several studies have also examined the relationshipbetween spirituality and psychological distress. Levineand Targ [28] found that greater spiritual well-being wassignificantly related to less anxiety, depression, anger andconfusion as well as greater functional well-being, andvigor. Gall et al. [37] also found that in breast cancersurvivors, religion/spirituality was related to less distress. Ina qualitative study by Gall and Cornblat [34], 39 long term(between 4 months and 23 years) breast cancer survivors inCanada wrote about the role religious and spiritual factorsplayed in coping with their illness. For 31 of the women,their relationship with a higher power had an important rolein coping with breast cancer. Only two women had anegative view of God. Stanton et al. [38] followed 70women with breast cancer (the majority were Caucasian)for a year after diagnosis. Turning to religion as a copingstrategy was not associated with distress. However, womenwho had low hopes (defined as not being able to mobilizeresources effectively to cope with cancer diagnosis andtreatment), but greater use of religion to cope, had lessdistress over time than women with low hopes who did notturn to religion to cope.

The important and understudied role of ethnicity in cancerand spirituality

What is missing from this research is a comparativeanalysis of how ethnic differences and variations mightpotentially mediate the relationship between religiosity/spirituality and coping with illness, Culture influenceshealth behavior, but also shapes the meaning of the illness[39, 40] and how people respond to it. The majority of thestudies in this area primarily focus on differences betweenAfrican-American and Caucasian women, with a fewexamining the experiences of Latina women. Aziz andRowland [41] reviewed the research and concluded thatAfrican-American and Latino cancer patients tend to bemore religious and spiritual than Caucasian women, and thatAfrican-Americans rely on religion as a coping source morefrequently than do than Caucasian women. Peterman et al.

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[42] surveyed 1,617 physically ill people (83% with cancer,median time since diagnosis for the entire sample was29 months) and found that spiritual well-being was associ-ated with being African-American and Protestant. Mickelyand Soeken [43] assessed spirituality and hope betweenCaucasian and Latina women with breast cancer. They hadmatched 25 pairs of women on age, income, and educationallevel. The only significant differences that they found werethat Latinas scored higher on intrinsic religiousness.

For African-Americans the church has historicallyserved as a major place of fellowship, education, expres-sion, and celebration and as a way to cope with illness aswell as a place of worship [44, 45]. Pettaway and Frank[46] found that African-American women who feel thatreligion is important to them feel good about themselves,look forward to the future, feel happy and content, andengage in more wellness behaviors than women who do notfeel that religion is important. Psychosocial and spiritualconcerns have been shown to be directly related tosymptom distress and mammography use among African-American breast cancer survivors [3, 44]. Religious beliefs,viewing cancer as a spiritual challenge, the need for prayerand faith, social support, and fatalism are common themesthat African-American breast cancer survivors use whendescribing how they cope with cancer [47]. Northouse et al.[10] found that in a sample of 98 African-American breastcancer survivors (approximately 4 years post diagnosis),one of the highest concerns that they had was “wanting tofeel closer to God” (pg. 455). These studies make it clearthat spirituality and church attendance may help African-Americans cope with cancer.

Lee and her colleagues [48] conducted a qualitativestudy in the San Francisco Bay Area with breast cancersurvivors (at least 10 years) from four ethnic groups. Theyinterviewed 100 African-Americans, 82 Chinese, 100Latina and 97 Caucasian women about alternative therapyuse. Spiritual healing was mentioned by 24% of the sample.African-Americans were more likely to use spiritual healing(37%) than the other ethnic groups. The next highest groupwas the Latina women (26%), then the Caucasian women(23%). Only 7% of the Chinese women used spiritualhealing. Ashing-Giwa and her colleagues [49] found thatspirituality was more important to African-American (n=24), Latina (n=26), and Asian (n=23) women than forCaucasians (n=12). Spirituality and prayer were integral intheir healing process. God was the ultimate support, anddetermined the outcome of the disease. Chiu [50] inter-viewed 15 breast cancer survivors from Hong Kong, China,or Taiwan. She found that the women gained spiritualstrength from their families, their religious traditions(Confucianism, Chinese Buddhism, and Christianity), alter-native therapies, meditation, art, literature and Chinesesupport groups.

In sum, only a few studies have examined the differencesbetween cancer survivors from different ethnic groups interms of spirituality and spiritual well-being. Most of thestudies that have looked at spirituality in cancer have beenqualitative and used mostly small samples of CaucasianEnglish speaking women. The studies that have examinedethnic differences also had small sample sizes. They alsodid not look at the relationships between ethnicity andreligious preference. The purpose of our study was to carryout a qualitative analysis examining the roles of spiritualityand spiritual support in women with breast cancer in theSan Francisco Bay Area from the following ethnicities:African-American, Asian/Pacific Islander, Caucasian andLatina. We wanted to determine if and how ethnicity playeda role in spirituality and spiritual support among thisdiverse group of survivors. We were interested in examin-ing qualitatively the role of spirituality and spiritual supportamong diverse breast cancer survivors and also in under-standing qualitative changes in spirituality from thetransition from pre-diagnosis to the period followingtreatment.

Methods

Participants Women who were no more than 4 yearsposttreatment for primary breast cancer (Stages 0–II) wererecruited from various sites in the San Francisco Bay Area.Eligibility criteria for study participants were: (1) diagnosedand treated not more than 4 years previously; (2) Over theage of 18 at the time of the diagnosis; (3) Stage 0, I or IIdisease only; (4) able to read and speak English, Chinese orSpanish; and (5) no prior history of breast cancer. Our aimwas to have 50 women from each ethnic group. Given theepidemiology of breast cancer patients in the San FranciscoBay Area, we felt that we would be able to recruit 50women from all the ethnic groups, but we weren’t sure ifwe could recruit more than that, and we wanted to keep thenumbers on each group as close as possible. Thereforewhen we reached 50 Caucasian women we no longerrecruited Caucasian women. The women were recruitedfrom a number of different sites including major hospitals,ethnic organizations, cancer resource centers, and healthfairs. Letters were also sent to women who had theirsurgery and treatment complete at the University ofCalifornia Comprehensive Cancer Center. Data on potentialparticipants were also obtained from the Northern Califor-nia Cancer Center. All recruitment procedures followedHIPPA regulations. IRB approval was obtained from allparticipating investigators’ research institutions, including:San Francisco State University, University of CaliforniaSan Francisco, Northern California Cancer Center, andUniversity of Denver.

214 J Cancer Surviv (2007) 1:212–225

Procedure

Training Research assistants: Prior to data collection withresearch subjects, we conducted a rigorous semester-longclass about the psychological and social aspects of breastcancer with 10 research assistants. In this class theassistants learned about basic biological processes in canceretiology, as well as a comprehensive overview of social/psychological factors in cancer. The student researchassistants also surveyed the literature on racial/ethnicdisparities in cancer survivorship. They learned aboutsurvey administration and qualitative interview techniquesand practiced conducting interviews with the researchersand other research assistants.

Recruiting participants

Once a woman contacted us and was found to fit all ofthe eligibility criteria, a research assistant contacted her toset up an interview. In order to increase compliance theinterview was conducted wherever the participant wished.Many times it was at her home, but interviews were alsoconducted in coffee shops and other public places. Thesetape-recorded interviews lasted approximately 90 minutes.Interviews were conducted in English, Chinese andSpanish. Participants were asked a series of open-endedquestions about types of social support used at diagnosis,during treatment, and after treatment; spirituality; psy-chosocial impact of breast cancer; general well-being(quality of life); impact of breast cancer on quality oflife; reactions of family members; ways of coping; workexperiences; advice to other women diagnosed withbreast cancer; and recommendations to the communityfor programs to support breast cancer patients andsurvivors. The audiotapes were then transcribed andtranslated if necessary. The questions were part of alarger protocol that included questionnaires on mood,quality of life, spirituality, and social support. The initialset of questionnaires was administered at this time. Thewomen also received questionnaires every 6 months for2 years. At the end of 2 years each woman participated inan exit interview.

We used a qualitative approach in this study tounderstand the role of spirituality for a racially andethnically diverse group of breast cancer survivors. “Qual-itative methods can be used to uncover and understandwhat lies behind any phenomenon about which little is yetknown” [51, pg. 9]. We argue that, given the paucity ofknowledge in this area, using a qualitative methodologicalapproach is a useful way to compare how ethnic differencesand variations mediate the relationship between religiosity/spirituality and coping with illness. Future research mightutilize the findings from this qualitative study to adapt and

refine existing measures to conduct studies using quantita-tive methods and larger sample sizes.

This study utilized a grounded theory approach [52, 53] toguide our interpretations. Past research with cancer survivorshave used the grounded theory approach to study spirituality[54, 55]. Grounded theory is a systematic methodology thatbuilds theory from data, rather than beginning the researchprocess with clearly articulated hypotheses to prove [51].Grounded theory provided the best methodological fit todevelop iterative analyses to better understand how partic-ipants constructed meaning from their experiences, and tocode for emergent themes in the data. First, each researcherindependently reviewed interview transcripts for contentregarding spirituality. Next, the transcripts were indepen-dently coded and analyzed for themes that appearedrepeatedly in the text. Coding was iterative and refinementswere made based on weekly project discussions until wereached a consensus on a final definition of each code.Finally, individual textual excerpts within each codingcategory were evaluated to determine whether they accu-rately fit the definition of the code and whether, how, andwhy there were substantive differences and variations acrossthe individual textual excerpts within each code. Throughoutthis coding process we developed memos to map ouremerging analyses. Thus, verification of the accuracy ofthe coding scheme (conceptual categories, their definitions,and the observations coded within each category) occurredusing both inductive and deductive methods [56].

Results

Demographics

We used various methods of recruitment in this study.Initially we sent out 348 letters to women who had beenseen at the University of California San Francisco Com-prehensive Cancer Center. An additional 1,097 letters weresent to women who were in the Northern California CancerRegistry. Two-hundred and forty-nine women responded tothe letters. We also recruited from health fairs, local supportgroups, and others working in the area. The initial samplewas 175, representing 50% of the women who contactedthe study (total number was 352). One hundred seventy-seven women called but were not eligible for the study.Reasons for not being eligible included unable to contact(13), diagnosed longer than 4 years previously (7), did nothave Stage 0, I, or II cancer (10), lived too far away to beinterviewed (22), was currently in treatment (10), and didnot speak English, Spanish, or Chinese (5). After westopped recruiting Caucasian women (we had filled ourquota), an additional 37 Caucasian women called thestudy. A further 22 women dropped out of the study (two

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were deceased) after the first interview. There were nosignificant differences between the ones who dropped outand the ones who remained on any of the demographicvariables (age, stage of disease, education, marital status,education, and time since diagnosis). We had transcriptsfor 161 women. Demographics for the sample (all 161)are presented in Tables 1 and 2. Overall, the number ofwomen in each ethnic group was fairly even, except thatthere were fewer Latina women than the other ethnicgroups (only 13% of the total sample). The women camefrom all over the world, but the majority were from the USor Canada (66%). Thirty-five percent of these womenwere Protestant, 26% were Catholic, 4% were Jewish, 4%Buddhist, 1% Muslim and 19% were not practicing areligion. Almost half (48%) of the women had Stage Idisease, 47% had Stage II disease, and 6% had DCIS/Stage 0 disease. Half of women were married/partnered(52%), and 59% were either a college graduate or hadsome post-graduate training. Mean age was 57 (rangefrom 31–83) and mean time since diagnosis was 24 months(range 4–95 months). Time since diagnosis for Caucasianswas significantly lower than Asian women (p=.05).Sixty-eight percent of the women felt that their health wasgood to excellent.

Not all of the 161 women mentioned spirituality ordenied any importance when asked. Although 97 (55%)of the women stated that they had an active spiritualpractice, 134 women (83% of the women for whom wehad transcripts) stated that they were spiritual in someway. Not surprisingly, women who had an active religiouspractice tended to say that they were spiritual (p=.02).They expressed their spirituality in a variety of ways fromgoing to religious services daily to walking in nature.Demographic data for this subset of women whoexpressed spirituality are presented in the right hand sideof Tables 1 and 2.

Spiritual versus religious factors

In our analyses we were able to define seven spiritualfactors across ethnic groups that played important roles inwomen’s responses to breast cancer: (1) God as aComforting Presence; (2) Questioning Faith; (3) Anger atGod; (4) Spiritual Transformation of Self and AttitudeTowards Others/Recognition of Own Mortality; (5) Deep-ening of Faith in God; (6) Acceptance; and (7) Prayer bySelf. We also found four more external religious factors: (1)Practical Support (including being or not being involved inan organized religion and disappointment in the lack ofsupport); (2) Prayer by Others (including people who mayor may not be from a religious institute); (3) ReligiousBehaviors; and (4) Suggestions to Others (about theimportance of spirituality in coping with cancer).

Spiritual changes since breast cancer

God is everywhere and is a comforting presence

This theme was mentioned by 33 women (25%). Theydescribed feeling comforted by the fact that God is

Table 1 Demographicsa

Variable Entiresample

Those whowerespiritual

p

n % n %

EthnicityAfrican-American 36 22 31 23Asian/Pacific Islander 52 32 47 35Caucasian 52 32 38 28Latina 21 13 18 12Place of BirthUS/Canada 107 66 87 65Latin America/Caribbean 14 9 11 8Asia/Pacific Islands 36 22 32 24Other 4 2 4 3Religion .006Catholic 42 26 37 28Protestant 56 35 51 39Jewish 6 4 3 2Buddhist 7 4 5 4Muslim 2 1 1 1Other 8 5 8 6None/not practicing 31 19 24 18Has an active spiritual practice 97 55 81 72 .02Marital Status .001Married/Partnered 83 52 70 55Single 25 16 19 15Divorced 28 17 25 20Widowed 16 10 14 11

EducationLess than 12 Years 3 2 2 2High School Graduate 10 6 9 7Some College 41 26 33 26College Graduate 49 30 43 34Post Graduate 47 29 38 30Stage .0000/DCIS 10 6 9 7I 77 48 63 47II 75 47 .62 46

Health RatingExcellent 21 13 18 16Very Good 51 32 44 39Good 37 23 29 26Fair 19 12 17 15Poor 5 3 4 4

aWhile we had ethnicity data for the entire sample (161) not everywoman answered every demographic variables. Thus the sample sizediffers from variable to variable.

216 J Cancer Surviv (2007) 1:212–225

constantly with them. As one 39-year-old Latina Christianwoman said: “This feeling that you’re never alone, that Godis always with you”. This comforting presence wasdescribed as a higher power in control, which meant theydid not need to worry. A 60-year-old African-AmericanBaptist woman said that

[it’s] hard but I guess with my faith I know that Godalways promised that He never put more on us than weare able to bear and I knew He was going to bring methrough it without a doubt. So, I really didn’t worryabout it. I just lean and depend on the Lord and hebrought me home. Knowing that God is a healernumber one. And I believe that He is there to protectme, has these guardian angels around me protecting me.

These women felt that God would be with them duringtheir cancer experience, would help them get through theirtreatment and would look after them. One 47-year oldFilipina Catholic woman explained an irredentist andliteralist approach to her belief in God: “When you read thescriptures that’s the word from God. You know, He said, ‘Beat peace for I am your God. And whatever you sick, whateveryou ask, I will grant you in my time, but not your time.’”

God and loved ones who were no longer alive were asource of comfort to many of the women. A 70-year-oldIrish/German Catholic woman felt that “I feel like I just liketo have Jesus’ arms around me and sometimes I’ll just sitthere and look at the trees and be around nature. But thepresence, really feels like there is definitely a presence thatis comforting me and saying that it’s all going to be okay.”This woman also “tune[d] into my mother and dad’s spirits,you know? Just ask mom and dad to be there. And I feelthat they’re there in the room.”

This closeness to God came from many sources. Somewomen mentioned feeling the presence of God all aroundthem. A 48-year-old Caucasian woman who followed NewAge practices1 said:

I could take the dog for a walk and I go out in natureand I feel better. And that to me is God is nature. Youknow God created nature so I go out and I see the treesand the clouds. And to me that’s God’s gifts to me youknow so those kinds of things give me strength andmake me feel better.”

The 70-year-old Irish/German Catholic woman also feltconnected to God through nature: “sometimes I’ll just sitthere and look at the trees and be around nature. But thepresence really feels like there is definitely a presence that iscomforting me and saying that it’s all going to be okay”.

For many of the women the connection was throughtheir church. For example, a 53-year-old Peruvian Christianimmigrant said:

I go to church on Sundays and the priest’s wife tells usabout the word of the Lord. She reads a lot. That helpedme a lot, to know about God. I feel closer to him now. Ifeel like he’s everything to me, the person who liveswith me, the person that shares everything with me andI even talk to him. Everything is God. I go to church. Iworry if I don’t go and I feel bad. It’s part of me.

1 New Age practices are those outside of mainstream religion in theUS. Many formulate their own belief system and practices, but othersjoin formal groups.

Table 2 Demographicsa

Variable Entire sample Those who were spiritual

x SD Range p x SD Range p

Age 57 12.2 31–83 .02 58 12 31–83 .03African-American 61** 11.3 34–82 63* 11.6 34–82Asian/Pacific Islander 56 12.5 33–81 56 12.8 33–81Caucasian 55** 12 31–83 55* 12.8 31–83Latina 56 11 39–82 56 10.2 39–71Time since diagnosis 24 11.2 4–95 .03 25 12 4–95 .02African-American 25 9.7 7–43 27 9.1 7–43Asian/Pacific Islander 26*** 9.7 7–48 27* 9.2 7–48Caucasian 20*** 9.5 4–40 20* 9.4 4–40Latina 23 18.4 8–95 23 60 8–95

aWhile we had ethnicity data for the entire sample (161) not every woman answered every demographic variables. Thus the sample size differsfrom variable to variable.**p=.06***p=.05*p=.04

J Cancer Surviv (2007) 1:212–225 217217

Questioning of faith

However, for some women a diagnosis of breast cancer leftthem in a spiritual crisis and they questioned their faith inGod. A 34-year-old African-Caribbean woman had a hardtime finding a way to recognize and express her spirituality:“Right before being diagnosed, I was searching. Like I feltempty. And I was raised Christian so I knew about theBible. And I started reading about Buddhism and then theTorah and I found Islam, and that’s what feels right. I’m nota diehard Muslim. But I believe in Allah. So that’s what’sputting me through”.

A 54-year-old Caucasian Catholic woman had a series oftraumatic events in her life before her diagnosis. She hadlived for several years with cysts in the breast so she wasmore worried about her chance of developing breast cancerthan other women who did not have cysts. She also lost herhome to a fire during the time before she was diagnosedand also felt that her medical follow-up had not been good:“Because I have cysts in this breast, but I had to betransferred and then my house burned down and all thisstuff happened to me and they didn’t track this other breast,as closely as they should have.” These stresses led to angerand a crisis of faith. “I think I lost a sense of my spiritualityafter I did not get well this time. I remember being so sick.Not knowing what was wrong with me. I mean I wasterribly ill. All this stuff happened to me, and I had canceragain and I didn’t get well. And so you automatically feel,you’ve already dealt with cancer you should be gettingwell. But I never got well. And so I remember thinking,what happened to God. Where’s God?”

She did not feel comforted by God and did not feelGod’s presence in her life. So she began to question herbeliefs and the idea that God comforts people in times oftrouble. However after her diagnosis she was able to lookback and see that in fact God had always been with her. Shesaid: “But, once I got my diagnosis, I would have to saythat God, you was there and He was with me.” But thisrealization came as the result of a major health crisis andattack to her physical self which seems to have resulted inthe woman believing in her self and self-worth rather thanjust relying on God. She said: “ It was more of mebelieving in myself again. Knowing that God is with methrough it all. No matter what. If you make it you make it,if you don’t you don’t.”

Anger at God

The women varied in the role that they felt God had playedin their diagnosis of cancer. Some women questioned Godabout what they had done and were they being punished.Others were angry or felt helpless. Many of these womenasked “Why me? Why did God have to pick me to have

breast cancer?” Some felt angry that they had done thingsright in their lives (in terms of taking care of their health)and that they did not deserve to get breast cancer. Somequestioned God, including a 44-year-old Caucasian womanwith no stated religion: “Um, well I go back to God-whyare you doing this? Of course I felt angry and mad at first.It’s the hating disease! Oh God, what did I do wrong? Andthen I said, why me of all people, why me? I’m the nicestperson in the world. That was my thought, like I didsomething wrong?” Some women felt that they had donewell in their lives, and wondered why God was giving thema crisis or a test of faith.

As one 59-year-old Chinese Christian immigrant said:

I felt very helpless. I thought it was too sudden.Because my health has always been good, I am fat, Iwas never sick before. Plus, I did not do anything badnor harm anyone before. How did I get cancer for noreason, but not others? I just felt it was really unfair.God was being unfair to me. When I first immigratedhere, I worked really hard. Now that the kids aregrown-ups and I should start enjoy my life, right?Then, I got cancer.

She felt that she had worked hard all of her life and nowwas her time to do the things that she wanted to do. But shebecame ill instead and was very angry. Anger is a commonreaction to illness in general as well as other negativeexperiences. Many people wonder why they became ill orhad a negative experience when they had tried to be goodall their lives [57]. Some people feel that illness is apunishment from God for their sins [58]. While only a fewwomen mentioned anger and helplessness the concept isincluded here because it is representative of negativecoping strategies. While expressing emotions has beenfound to be beneficial in reducing distress and anger, self-blame can lead to depression and feelings of helplessness/hopelessness. Someone who is depressed and feelinghelpless or hopeless may not adhere to a treatmentregimen. Being helpless/hopeless has also been related topoorer survival from breast cancer [5, 9, 13].

Spiritual transformation/recognition of mortality

Many of the women had a changed perspective on life andmortality, and recognized that their lives were finite. Thisrealization often prompted a more spiritual approach to lifethat including ‘taking things in stride’ and letting go ofissues or struggles that were beyond their control.

A 40-year-old Vietnamese Buddhist woman felt that hercancer experience made her a better person: “Lookingback, with the, I guess as long as this doesn’t come back ifmy cancer doesn’t come back and you know, make itworst, I actually think it was a good experience and I’m

218 J Cancer Surviv (2007) 1:212–225

actually glad that it happened. Because it changed my lifeso much that I’m a lot happier right now.”

Several women talked about how having cancer madethem more appreciative of life and those around them. The34-year-old African Muslim woman from the Caribbeanfelt the change in somewhat of a spiritual way as a result ofbeing in a support group:

It’s like, I look at people differently you know and I’mnot so selfish and judgmental as I used to be. And that Ican actually learn and gain from everyone I come incontact with. I kind of limited myself to who, before,and having been exposed to this support group and allthe different people you know, it just opened my eyesthat—I need to stop being so self-centered. I’veaccepted now that I can live each day as it would oflast and live it to the fullest. And know that I’m nottaking it for granted like I was prior to being diagnosed.But if I end up in the hospital where I’m terminal andI’m going to die, I’ve come to just accept it. As opposedto before I was afraid of it, you know and angry.

A 39-year old Mexican Catholic woman said:

It makes you appreciate life and appreciate what youhave, appreciate what you don’t have and in my case,it has sorta make it, make my life everyday countsmore. I enjoy everything, the little simple things thatsometimes you just take for granted, and even if I can’tdo the wonderful crazy things maybe I would like todo or I was doing when I was young, now I just reallyenjoy everything. Well that I have more strength then Ithought of that I can go through and handle reallydifficult situations more than I thought before, I guessI am loved more than I though I was. I think myconvictions got stronger and I have more faith in God.

A 44-year-old African/Native-American Baptist womansaid:

I moved forward from this experience to know thatlife is too short and I mean you could. You know theold saying, ‘Be here today gone tomorrow.’ Just try todo the things that you want to do in this lifetime orwanna try or whatever...so it gives me more strengthto know that I am gone, I’m going through this and Iam still here. I’m not all you know tripped out or torndown or just always depressed or whatever.

A 50-year-old Caucasian Presbyterian woman, said:

I don’t like the fact that I had to go through itphysically or anything but you know I can see that ithas, that is definitely a positive for me. I think it justbrought me to a more realistic understanding that lifeis finite. Just to really to kind of get my spiritual act

together, so to speak. Like ok! Not too much time leftmaybe. I gotta really study now!

Each of these women talked about how breast cancerforced them to reconsider what they do with their time—how they spend it, whether and how they choose to expendtheir energy and emotions, and a new sense of urgency tolive life to its fullest because they recognize that their timeis finite. For some women this meant a change in the waythat they viewed family, friends, their careers, etc.

Deepening of faith in God

Many of the women spoke about the changes in their livesas a result of deepening spirituality in the face of breastcancer. Some women described the search they went on tofind meaning and/or spiritual comfort. A 39-year-oldCatholic woman from South Korea described the processshe went through spiritually:

Okay. I had to really dig deep, spiritually andemotionally. I’ve always been a spiritual person butnot a, what you would call a religious person, so interms of organized religion. I believe strongly in aGod and in the teachings of Jesus—along with theteachings of many other amazing souls that have cometo earth to teach us. And, I had to really get in touchwith that, to really get in touch with who I wasspiritually so I could get over this fear of the physicalthings that can go wrong. And, it took me severalmonths but I did manage to get past it—because I wasdwelling on it and I think I was going to be a self-fulfilling prophesy if I didn’t get rid of the negativethat was encroaching on my life.

A 47-year-old Caucasian woman searched for meaningin various religions and found solace in the NativeAmerican belief system:

All my life, I kind of been looking for a spiritualbelief system that could hook up with and I neverfound it until, I read a lot of stuff my whole life.Finally came to kind of an understanding to myselfwhat my spiritual values were, but I couldn’t findanybody else, that were the same, until I startedreading a book by a Native American and it just it hitme like a ton of bricks. To my knowledge I’m notNative American, but I feel an enormous kinshipwith the spiritual values, they have an attachment toearth. So my God is a tree, you know, the ocean. Sothat’s kind of unusual and I didn’t find a lot ofsupport for that other than attending, beginning toattend the Native American events and stuff like that,which for me going to a powwow was a spiritual

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experience for me, it really is, it’s like going tochurch or something, it fulfills me, make me feelkind of whole. So it was like a respite for me, thatwas the respite from all of this.

For the 34-year-old Muslim African woman from theCaribbean, her cancer experience transformed her view ofGod: “I’ve always believed in a higher source, but now Iknow there is. I know there is because it’s like anemotional, spiritual transformation too. I feel like theshining light inside.”

Many of the women spoke about how spiritually strongthey felt. As one 54-year-old Caucasian Catholic womansaid: “I learned how strong I am. The strength that I have,the will that I have to live. I think that is really the strengthand my spiritual growth is tremendous.”

Spirituality was important in helping many of thewomen get through their cancer treatment by focusing onand managing smaller blocks of time rather than the biggerpicture that can be overwhelming. A 39-year-old MexicanCatholic said:

I think my faith really helpedme. I think it has deepen[ed]my faith and the whole time that I was going throughtherapy. I wasn’t really thinking about long, long-termalthough those where my wished, but I was reallyconcentrating just making one week at a time, becauseif I keep thinking I have five more months of treatment orsomething like that, I just couldn’t handle that so Idecided to take it first day by day and then week byweek.

A 66-year-old Mormon woman from Nicaragua spokeabout changes in her mood as well: “No, while I was intreatment, but I always put a lot of effort, to make myselffeel better, and I think that helped me a lot, because I believe inGod. I’m not a fanatic, but my disease made me feel closer toGod, and that was one of the things that helped me a lot,because I’ve always been very calm, but my disease has madeeven calmer.”A59-year-old Baptist African-American womanalso spoke about psychological changes: “Well yeah, maybe itbrought me closer to God. Well I feel he helped me throughthis so I owe my life to him, I just [feel] good about myself.”

A 65-year-old Mexican Protestant woman felt a change inherself during treatment: “It definitely changed when I was intreatment; it was like I was a different person. I can’t evenexample [sic] it, because I’m not the same person I was when Iwas in treatment, but I was certain much more peaceful person.”

One 59-year-old Asian felt that her spirituality permeatedher treatment: “I think I felt more connected because evenwithin the word radiation its just a um light and just focusingdirecting that light to the spot and I think that made me torealize that is what we want to be illuminated in a radiatedfrom a spiritual level and this, this was just kind of likepointing up to that.”

As mentioned previously many people find faith in Godor other higher power during illness. The main theme ofthis section was belief in a higher power and it’s meaning toa woman diagnosed with breast cancer. It is also aboutletting go of control of the outcome of the breast cancerdiagnosis, treatment and reoccurrence, trusting that a higherpower is taking care of everything. Prayer is an outcome ofhaving a belief in a higher power. People start to praybecause they believe that a higher power is in control.Prayer allows one to “talk” with God, ask questions,express fear and anger, etc.

Acceptance

Instead of feeling angry many of the women were moreacceptant of their illness. For some women there was nosearching or anger or struggle to interpret their diagnosis, theywere able to accept the fact that they had the disease.Acceptance can be a more positive coping strategy. Womenwho are able to accept their illness may be more likely to beactive in treatment. Instead of getting stuck in the anger andself-blame modes these women are able to move on and livewhile at the same time undergoing cancer treatment. Accep-tance was a common theme across religions and beliefsystems. As the 55-year-old African-American Protestantwoman put it: “It was just in God’s plan. I never questionit....I just accepted it and kept movin’ on”. Interestingly, onlytwo of the five women that said they were Buddhist mentionedacceptance, although it is an important part of the religion [59].A 66-year-old Caucasian Buddhist woman felt that as a resultof her training in Buddhism: “it became very clear to me that Iwas going to be fine, no matter what happened, I would befine. Now I’m not saying that I would live, but no matter whathappen with the cancer I would be fine.” Some of the thingsthat she learned were to “Accept what is given” and to “havethe faith that you can meet whatever comes”.

Some spoke about gaining meaning and purpose in theirlives as they grew more acceptant of their cancer. Forexample, a 44-year-old African/Native American Baptistwoman said: “Because, of things I am going through, butoverall you know I feel like I have purpose. My life haspurpose and there’s a reason why I am here. There’s a reasonwhy God wants me here and it’s not like to be abusedphysically and mentally and consistently depressed, it notwhat God wants for you and I don’t want it for myselfanymore. So, it’s, it’s given me a lot of strength, a lot ofstrength.” She felt more spiritual and closer to her family as aresult of her cancer experience.

For an 82-year-old Irish/Canadian Catholic woman accep-tance meant becoming optimistic:

Spirituality you just become optimistic, you say thingsare going to turn out well. And that can do a lot. Your

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thoughts. Be optimistic and even if it doesn’t affect you itmakes you feel more cheerful. It takes away the...it givesyou hope that you...although I am a little less spiritualhaving become rather cynical in my old age. You can...Ithink your mind can do wonders. I really believe this.

Three of the women said that they could surrendereverything to God and He would heal them either alone orby getting them good health care and treatments. One 47-year-old Catholic Latina woman felt a sense of relief tosurrender to God:

Because it does help to leave you know this bigproblem to—to God. You know it’s just like—it’s sucha heavy load. Well, I’ll always be religious. And um,for me I just—I just thought God in my mind youknow that I can’t handle this disease that I justcouldn’t whatever will, it will be. You know I willaccept it, you know what I mean. I can’t cry and thensay, ‘Whyme?’ or be upset about it, what’s done is done.There’s a reason for it and that’s the reason and you knowit made me easier for me....So it’s just a belief. It’s just astrange belief; I don’t know how it happens. It’s just is.But I was born that way you know what I mean. BeingCatholic, so for me it’s—it was easy.

Another older 60-year-old Baptist African-American said:

When I was ill, I put it in God’s hands and it was a bigrelief. If I had not had that closeness, it would havebeen a lot harder for me, I’m sure that it would, but itworked out okay. It’s like if I’m sad, I turn to God.That was the main thing that really, really helped meget through what I went through.

The 57-year-old Filipina Catholic woman talked abouther strong faith and belief:

(What helped me was) ...strong faith and belief. Beliefin miracles. And I have strong family support and Irelied on prayers and the prayers of others. So,everything is up to God. Just keep on praying andyou’ll be fine. So, that’s what happened. That’s what Idid. So, have a strong belief. Put all of those negativethoughts that you’re going to die tomorrow that no,no, no. I said there’s much higher there who knows allof those things that’s going to happen.

A 50-year-old African-American woman who did notstate her religion said: “God is real. Life is real and youhave to turn your life around and give it to God. The day Ifound out that I had breast cancer was the day I found outthat I had control over nothing.”

However some women pointed out that being fatalisticor giving up their lives to God was not the same as givingup on one’s duty to oneself. Fatalism as we have described

it [60] reflects a person’s understanding that her destiny isnot under her control totally, but she needs to use theresources that God has given her to fight an illness.Therefore it is more like “fighting spirit” in that the womandoes whatever she can to heal herself, but at the same timeacknowledging that not everything is under her control.

One older Caucasian woman (64 years old) who did notspecify a religion said:

I feel I think more than ever and I have certainly felt itbefore in my life but I feel more than ever, that mydestiny is really out of my control. I do feel spirituallyand that’s not necessarily a negative sentence. It makesme just sort of feel that more of...you know why I’mhere, how long my life will be you know, there is noassumption on my part that my life’s going to belong...anymore, I mean of course in my twenties youthink you life into [sic] your eighty-five and what am Igoing to do when I’m eighty-five? I don’t think thatway anymore at all, I mean, I’m not talking myselfinto the other either, it’s just that I really get it, I canhave a recurrence in three months or three years, orthirteen years and, I need to really, the spiritual part forme is what do I really want to do, and that’s why I’mnot working right away.

This woman summed up our version of fatalism [60].She acknowledged that she could have done better in termsof diet but she has done a lot to take care of herself. Yet shegot cancer. She does not feel that cancer is an automaticdeath sentence, that she can fight it. Yet she feels that sinceshe is older she might not have much longer to live anyway.She mentions that this may be in contrast to a youngerwoman who might have longer to live, but she accepted thefact that she may not live too much longer since she isalready 64 years old. She was aware that even though shedoes the best that she can to live a healthy lifestyle, she hadno control over her destiny. This view is similar to theyounger women in our study.

Discussion

In this study we found that 134 of 161 breast cancersurvivors said that they were spiritual. The majority of thewomen (83%) interviewed spoke about the importance ofspirituality in their lives and as a way to cope with cancer,although only 81 (72%) had an actual spiritual practice. Thewomen came from a variety of ethnic and religioustraditions. This suggests that for some people it is theindividual and how she perceives her spirituality rather thanorganized religion that determines how spiritual she feels.

Types of spirituality, religion, and practice were varied,but did cluster around some basic themes. The women’s

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comments fell into seven separate factors: (1) God as aComforting Presence; (2) Questioning Faith; (3) Anger atGod; (4) Spiritual Transformation of Self and AttitudeTowards Others/Recognition of Own Mortality; (5) Deep-ening of Faith in God; (6) Acceptance; and (7) Prayer bySelf. Within these themes we found differences betweenreligions and ethnic groups. A higher percentage ofAfrican-Americans, Latinas, and Christians felt comfortedby God than the other groups. This is consistent withother studies that have found that African-Americans andLatinas tend to be more spiritual than other groups [61,62]. What is interesting is that of the women who were notpracticing a religion, 12% felt comforted by God, but 18%blamed themselves for their cancer and felt fatalistic. Wedid not ask whether the women practiced a religion beforethey got cancer and if their religious practice haddecreased as a result of their struggle with makingmeaning of why they got cancer.

Religion and spirituality are complex phenomena,involving cognitive, emotional, behavioral, interpersonal,intrapersonal, and physiological dimensions [15]. Theyare also expressed in different ways (e.g., religiousattendance, prayer, music, inspirational reading, supportfrom others, etc.). Spirituality can come to the forefrontwhen one is facing a serious illness. For many of thewomen in this study the trauma of a breast cancerdiagnosis brought them deeper faith and appreciation oflife. Many of them said that they had spiritual trans-formations that changed the way that they looked atthemselves, their lives, and how they related to thosearound them, including God.

Some studies have suggested that spirituality is greaterin the elderly. Feher & Maly [33] found similar themesamong their sample of elderly women with breast canceras was found in this study. However in this study only 39(29%) of the 134 women were over age 65. Forty-nine(28%) of the women were under the age of 50. It may bethat the commonality of having a life threatening illnessbrought out the spiritual in the younger women as well asthe older. However, some of the aspects of spiritualitywere mentioned more by older women than younger. Forexample, six of the ten women who mentioned changes inhow they viewed themselves or others were older. This isnot consistent with the finding of Bloom and hercolleagues [63] who found that breast cancer survivorsunder the age of 50 were more aware of the fullness oflife. However, the numbers of women in each category ofthis study were small. Of the 19 women who spoke of ac-ceptance, only two were below the age of 50, and 10 wereaged 65 and over. This is consistent with some studies ofthe elderly that found that the elderly might expect andaccept physical problems as they age [64]. The age rangeof the women who spoke of acceptance was from 33–82.

The age range of the 20 women who mentioned mortalitywas also the same range. However, only five of thewomen were aged 65 and over, and 12 were under the ageof 40. While there are data that younger women havemore problems with psychosocial adjustment to cancer[65, 66], few studies have looked at age differences inspiritual needs. This study did not mention spirituality onthe recruitment materials, so the women did not self-selectto be in the study on that basis. While specific questions inthe interview covered spirituality and spiritual practice,the women were told at the beginning that they would beable to tell their stories without being specific.

The highest percentage of women who said they werespiritual were Asian/Pacific Islanders (35%), and thelowest was Latinas (12%). These are similar to percen-tages of women in each ethnic group in the entire sample.These results seem contrary to the notion that African-American and Latinas are more spiritual than other groups[41, 43, 68, 69]. However, these differences may be due tothe way spirituality was measured. For example, Mickleyand Soeken [43] examined spiritual well-being rather thanspirituality. Culver et al. [67] examined religious coping.Other studies have looked at religious behaviors. WhileAshing-Giwa et al. and her colleagues [49] found thatspirituality was more important for non-Caucasians, theirsample size was smaller.

It must be noted that spirituality is not always a form ofcomfort or a positive coping strategy [27, 68]. Somepeople can also cling to spiritual belief systems that maybe detrimental to their health and cancer treatment. Somepeople feel that illness is a punishment from God for theirsins [49], and indeed some of our participants mentionedthis. The transcripts from the women in this study wereselected because they had talked about spirituality whenasked in an interview. For most of these womenspirituality was a positive coping style, although a fewof the women talked about their anger towards God andfeelings of hopelessness.

The comments of the women in this study suggest thatspiritual interventions might be useful for them. Studieshave shown the benefits of spiritual interventions forpeople with cancer [16, 19, 20, 69]. And for somereligious interventions might be beneficial as well [27].Many churches, synagogues and other religious institu-tions now offer healing services. However, for people withno religious affiliation or who do not feel comfortable inreligious institutions, spiritual interventions held in otherplaces (e.g., the hospital) might be more beneficial.

This study shows that women from various ethnic andreligious backgrounds may feel more similar to each otherin terms of spirituality and spiritual concerns thandifferent. The common themes of acceptance, change inviews of self and others, getting comfort from God or a

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higher power and deepening of faith seem to transcendreligious and ethnic differences. However, within ethnicand/or religious groups both the internalization of aspiritual response to a life threatening illness as well asthe expression of spirituality may be similar.

This study has some limitations. The sample size wassmall, particularly for Latina women. The women wereinterviewed after their treatment had ended, for somewomen up to 4 years posttreatment. We asked them tothink back on their experiences with diagnosis andtreatment. It may be that their sense of spirituality wasdifferent at the time of diagnosis or while in treatment,and they might not have remembered significant feelingsor thoughts. In addition to this recall bias, the number ofwomen in the subcategories was very small at times, andthese results may not be generalizible to other groups.Future studies should have larger sample sizes so that theycan differentiate among Asian/Pacific Islander and Latinawomen. There may also be differences between womenwho were born in and outside the United States.

Future research should recruit more people from otherfaiths. The women in this study were more likely to beCatholic or Christian than any other religious group. Byexamining more closely the differences in spiritualityamong people from different countries and ethnic groupssuggestions could be made about how to tailor a spiritualintervention for cancer patients. Some women mayrespond to a spiritual intervention while others are notinterested.

This study provides the foundation for larger scaleanalyses using representative samples for all ethnicitiesreported here to obtain a more complete picture of spiritualpractices as a means of coping among breast and othercancer survivors. The intent is that this mode of coping canprovide many cancer survivors the specifics of anotheroption (spiritual practices) that many have anecdotallyfound helpful. This area of coping can be a confusingoption to many. However, many of the women in ourstudy became more “authentic”, and said that they foundout who they were inside. For them spirituality wasgrounding and helped them to appreciate themselves andlife more. Others found their solace in God and said thatthey had given control over to God and that God was acomfort to them. While letting go of control may beviewed as negative, for some women it is not. It may bethat these women give control over to God but recognizethat God works through doctors and other healthprofessionals. If health professionals become more awarethat this fatalistic attitude may not be detrimental to thepatient they may be able to encourage the idea that Godworks through them and the medicine, potentially in-creasing the likelihood of adherence to prescribedapproaches.

Acknowledgement The authors would like to acknowledge the helpof our research assistants: Yaffa Alter, Heather Law, Erin McCoy, AnaFreire, Mariaelena Gonzalez, Regina Lagman, Mabel Lam, BeverlyLynn, Sann Situ, Chris Van Onselen, Shelley Volz, Ivy Wong, GloriaBoehm, Tina Chan, Julie Armin, Ann Gilliard, Qiu Chen Bookmarknot defined.

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