Serveur d'exploration sur le lymphœdème

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“I've Been Through Something”

Identifieur interne : 006432 ( Istex/Corpus ); précédent : 006431; suivant : 006433

“I've Been Through Something”

Auteurs : Wendy Carter Kooken ; Joan E. Haase ; Kathleen M. Russell

Source :

RBID : ISTEX:D603CE697471D2870D265D3BF754F16421F21A7C

Abstract

This article describes common experiences of African American women breast cancer survivors through poetic analysis. Group-as-a-whole theory and empirical and interpretive phenomenology guided analysis of transcripts from three focus groups (n = 21) of African American breast cancer survivors. Familiarity with transcripts and themes led to awareness of poetic ways in which African American women described experiences. Black feminist literature and African American historical references contextualized survivors' experiences. Poetic interpretations of African American women's breast cancer experiences, from diagnosis to survivorship, were created from transcript dialogues. Verbatim words were used to construct the poems, as often as possible. Eleven poems describe the journey from diagnosis to survivorship as experienced by African American women. The poetry may raise levels of awareness of African American women's breast cancer survivorship experiences. Attention to subtleties that underpin culture within the context of health care environments may help health care providers to improve cultural competence.

Url:
DOI: 10.1177/0193945907302968

Links to Exploration step

ISTEX:D603CE697471D2870D265D3BF754F16421F21A7C

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<meta-value>896 “I've Been Through Something”Poetic Explorations of African American Women's Cancer Survivorship SAGE Publications, Inc.200710.1177/0193945907302968 Wendy CarterKooken Bradley University, wkooken@bradley.edu Joan E.Haase Indiana University School of Nursing Kathleen M.Russell Indiana University School of Nursing This article describes common experiences of African American women breast cancer survivors through poetic analysis. Group-as-a-whole theory and empirical and interpretive phenomenology guided analysis of transcripts from three focus groups (n = 21) of African American breast cancer survivors. Familiarity with transcripts and themes led to awareness of poetic ways in which African American women described experiences. Black feminist literature and African American historical references contextualized survivors' experiences. Poetic interpretations of African American women's breast cancer experiences, from diagnosis to survivorship, were created from transcript dialogues. Verbatim words were used to construct the poems, as often as possible. Eleven poems describe the journey from diagnosis to survivorship as experienced by African American women. The poetry may raise levels of awareness of African American women's breast cancer survivorship experiences. Attention to subtleties that underpin culture within the context of health care environments may help health care providers to improve cultural competence. African American cancer survivors breast cancer cultural competence disparities ealth disparities can translate into earlier death, lower quality of life, Hloss of economic opportunities, and perceptions of societal injustice for culturally diverse populations (Centers for Disease Control, 2005). Health disparities affect cancer patients across the cancer control continuum from prevention through end-of-life care (Hewitt, Greenfield, & Stovall, 2006). Breast cancer is the second leading cause of death in African American women, and 5-year survival for African Americans is 75%, compared to 89% for Whites (American Cancer Society, 2005). The mortality rates for 897 African American women with breast cancer have remained unchanged, despite a decrease in the mortality rates of women from other ethnic groups (Farmer & Smith, 2002). Genetic, environmental, nutritional, psychosocial, socioeconomic, and cultural factors are associated with breast cancer mortality rates in African American women (Ashing-Giwa, Ganz, & Petersen, 1999; Hoffman-Goetz, 1999; L. Jones & Chilton, 2002; Phillips, Cohen, & Tarzian, 2001; E. Thomas, 2004). Research related to quality of life and survivorship issues for African American women may be one way to begin to understand some of the psychosocial and cultural factors affecting quality of life and breast cancer survivorship experiences (Abrums, 2004; Ashing-Giwa et al., 2004; M. Gates, Lackey, & Brown, 2001; Gibson & Parker, 2003; Henderson, Gore, Davis, & Condon, 2003; Hoffman-Goetz, 1999; Lopez, Eng, Randall-David, & Robinson, 2005; Phillips et al., 2001). In this article, we describe the experi- ences of a sample of African American women who had survived breast cancer. A secondary analysis of data from a study on the quality of life of African American breast cancer survivors was done to better understand cultural factors affecting quality of life and survivorship in African American women breast cancer survivors. Interpretive phenomenological findings are presented through the lens of historical and cultural experiences of African American women and poetic description and interpretation. Knowledge of the subtle yet powerful ways that historical cultural perspectives influence experiences may contribute to provision of more culturally competent health care that, in turn, may influ- ence ways African American women perceive and receive health care. Description of the Problem Health Disparities and Cultural Competence In 1998, the “Initiative to Eliminate Racial and Ethnic Disparities in Health” was begun at the behest of former President Clinton (Institute of Medicine [IOM], 2003). Previous research has not adequately explored the influence of Authors' Note: This study was supported by a grant from the National Institutes of Health/ National Institute of Nursing Research titled “African-American Breast Cancer Survivors' Quality of Life” NIH/NCI RO3 CA97737, and we acknowledge the Indiana University School of Nursing T 32 Training Grant, NR 07066 National Institute of Nursing Research, principal investigator: Joan Austin, PhD, RN and its funding and training for Ms. Kooken in her doc- toral studies. We acknowledge Drs. Sharon Sims and Melinda Swenson for their assistance with initial drafts of this article. Please address all correspondence to Wendy Carter Kooken at wkooken@bradley.edu. 898 race or ethnicity on diagnosis, treatment, and outcomes of disease (Beach et al., 2005). Understanding cultural perspectives is important to decrease the possi- bility of unintentional discrimination, also known as disparate impact. Disparate impact is a condition in which there appears to be no intent of dis- crimination, but nonetheless the results of behavior are similar to intentional discrimination (IOM, 2003) and may contribute to health disparities. Culture is a core consideration in how people behave, interpret, and perceive their illness, and cultural knowledge is essential for nurses regard- less of the health care setting (American Nurses Association [ANA], 1991). Culture influences the clinical encounter through the culture of the nurse, the patient and family, and the health care organization (ANA, 1991; Kagawa- Singer & Kassim-Lahka, 2003). Effective teaching, meaningful interventions, appropriate assessments, or helpful patient advocacy cannot be achieved without understanding of patients' perceptions of their illness framed in a cultural context (ANA, 1991; Luna, 2002; Mattson, 2005). Nurses are obligated to help decrease health disparities, improve quality of health care services, and improve health outcomes through culturally competent care (Fernandez & Fernandez, 2004; Kagawa-Singer & Kassim-Lahka, 2003; National Center for Culturally Competent Care, 2005). Knowledge of cultural perspectives is essential to becoming culturally competent (Broome, 2004; Edwards, 2003; Surbone, 2004). Culture has been defined as “the thoughts, communications, actions, customs, beliefs, values, and institutions of racial, ethnic, religious, or social groups” (Office of Minority Health [OMH], 2001, p. 4). Culture is an integral part of how persons relate to and make sense of the world, and culture is used as a way to connect with others, especially in illness (Kagawa-Singer & Kassim- Lahka, 2003; Surbone, 2004). An understanding of culture and its impact on lived experiences is important to provide culturally appropriate, sensi- tive, and competent care. Competence in the cultural sense means having the ability to be effective in interactions with others regarding their cultural beliefs and practices (OMH, 2001). A person who strives to be comfortable with the diversity associated with culture exhibits certain characteristics, such as understanding his or her own self, understanding culture within context, and pursuing knowledge and gaining skills that are culturally rele- vant (IOM, 2003; Luna, 2002; R. Thomas, 1999). Literature on African American Women Survivors of Breast Cancer African American women who are survivors of breast cancer are one example of a population that may benefit when health care providers have 899 knowledge and understanding of their lived experiences of surviving breast cancer. Little information was found in the literature that could be used to improve cultural competence with this population. In combined database searches (Ovid MEDLINE, CINAHL, HealthSTAR, Journals@Ovid, Your Journals@Ovid, Blackwell Synergy, Sociological Abstracts, SocScience Abstracts, psyINFO, and psyARTICLES) using combinations of the key- words African American, cancer survivors, breast cancer, cultural compe- tence, disparities, survivorship, and quality of life, few articles were found. Fifteen articles were found in a combined search of cultural competence, African American, and breast cancer, the majority of which were focused on cancer screening and cultural implications. When the keywords cancer survivors, African American, cultural competence, and breast cancer sur- vivors were combined and limited to research, only 1 article was found. The article focused again on the impact of cultural competence and screening for breast or cervical cancer. Only 1 article presented a culturally diverse view of the psychosocial issues encountered during breast cancer diagnosis and treatment (Ashing-Giwa et al., 2004). A few articles were found on African Americans and breast cancer survivorship (Aziz & Rowland, 2002; Dow, 2003; Gibson & Parker, 2003; L. Jones, Brawley, Johnson-Thompson, Lythcott, & Newman, 2003; Wilmoth & Sanders, 2001). Aziz and Rowland focused most broadly on survivorship issues, ethnic minorities, and the medically underserved; however, most other articles on survivorship focused on particular issues related to longer term survival, such as sexuality or other treatment-related effects. Although these survivorship issues are extremely important, this research article examines the more immediate aspects of coming to survivorship. In other words, the experi- ences of African American women—beginning at diagnosis and ending with their declaration of survival—are presented as experiences to consider in the quality of life in long-term survivorship from breast cancer. African American Historical Context The conduct of research with African Americans without a historical basis leads to a lack of cultural understanding (Hill, 1998). Because culture is “a response to past and present historical conditions” (Cherlin, 1998, p. 156), history becomes an important part of understanding cultural practices. Jordan (1969) commented in her book Who Look at Me, “We do not see those we do not know” (p. 97). Historical contexts give researchers another way to see and know the culture they are examining. A clearly documented history exists in regards to African Americans and racism. In many ways, African Americans as a cultural group have 900 experienced a unique sort of discrimination. Unlike other immigrants, Africans were forcibly brought to America as slaves. Once in America, Africans were sold and held as property (Horton & Horton, 2001; Watts, 2003). These slaves were often regarded as both child and adult, as persons who could not be responsible to make their own decisions (Franklin & Moss, 1994). Absolute compliance was expected, and deviation from expected norms was responded to with violence (Byrd & Clayton, 2001; Horton & Horton, 2001). Despite the abolishment of slavery, overt discrimination, power, and con- trol over African Americans continued until the civil rights movement in the 1960s. Considering this, out of nearly 400 years as an American cultural group, African Americans have had full citizenship rights for only about 40 of those years (Byrd & Clayton, 2001). Historical practices have informed the way African Americans were treated at every level of society, including health care. African American History and Health Care The history of discrimination against African Americans as a cultural group influenced African American experiences within the American health care system. Concerns about slave health are documented from the 16th century (Byrd & Clayton, 2001). Racial segregation was an established practice both in the treatment of patients and in the education of health care profes- sionals. Unethical medical treatment of African Americans is further docu- mented through the Tuskegee experiment in 1930 (J. Jones, 1993). Although now considered general knowledge, it is worth mentioning that the apology for this inexcusable “research” was not officially made until 1998 (Byrd & Clayton, 2001). Researchers who have examined health disparities have outlined several problems experienced in health care by African Americans and other cultur- ally diverse groups. Findings strongly indicate that race affects clinical deci- sions, often negatively (Byrd & Clayton, 2001). Treatment decisions have been examined in the context of African American culture. Physicians have viewed African Americans as noncompliant and poor, therefore less intelli- gent, which has led to culturally unequal treatment decisions (Watts, 2003). Inequalities exist in health care related to clinical care quality, cultural com- petence, physician–patient communication, and access to care (L. Jones & Chilton, 2002; IOM, 2003; Watts, 2003). African American health profes- sionals and researchers have consistently documented health disparities and poor health status for African Americans during the 20th century. This doc- umentation has not led to improved health status or equality of care for African Americans. 901 African American Women's Experiences African American women have experiences both similar and dissimilar to African American men. Not only were African American female slaves exposed to the same harsh and cruel experiences as male slaves, but addi- tionally, they were exploited sexually (Horton & Horton, 2001). Although both men and women have been discriminated against as African Americans, women have had a more layered experience of discrimination, including dis- crimination related to being African American, being a woman, and being an African American woman (Shambley-Ebron & Boyle, 2004). Therefore, a different lens of analysis than that of general African American history needed to be used to gain understanding of the levels of discrimination expe- rienced by African American women. Black feminist literature became a major influence in our effort to understand and contextualize at a deeper level this unique and complicated cultural history. Black feminist author hooks (1981) often described Black women's strug- gles with being depicted as supersexualized and dominant over men, and she was very clear that despite this historical portrayal of African American women, the opposite was often true. Both Jordan (1989) and hooks (1981) described histories of discrimination against African American women both for being Black and being a woman. The unique history experienced by African American women has an impact on their lived experiences in the present day (Horton & Horton, 2001). Method Purpose of the Study The purpose of the primary study was to compare African American sur- vivors of breast cancer to White survivors of breast cancer and to African American women without a history of breast cancer on a series of quality of life measures. As part of the primary study, three focus groups were con- ducted to address one of the study aims: obtain the African American women survivors' perspectives on the cultural appropriateness of the quality of life measures. Design This article reports on the secondary analysis of the qualitative focus group data using interpretive phenomenology, using poetry as a way to convey participant data. 902 Sample The sample consisted of three focus groups of African American women. Participants were recruited by an oncology nurse, a cancer specialist health educator, and a community activist through acquaintances in the African American community. The participants (N = 21) ranged in ages from 38 to 78 years (M = 59, SD = 9.4). Eight were married or living with a partner. The sample was purposively recruited to reflect a wide range of socioeconomic status. Incomes ranged from less than $5,000 to $75,000 per year. All had survived breast cancer and believed themselves to be free of cancer at the time of the study. The participants in the focus groups provided unexpectedly rich data about their experiences of being African American breast cancer survivors. Although dutifully answering our primary questions about the quality of life measures, participants made it clear that they also wanted to use this rare opportunity to be with other African American survivors to share their survivorship stories among “sisters.” The two focus group facilitators, who were African American women (one is a coauthor), astutely recognized this desire and adjusted their facilitation approach to foster a lively, open-ended discussion of participants' experiences. The focus group sessions were scheduled to last 1½ hr and were stopped at that time. Analyses of Data Method of Primary Analysis— Empirical Phenomenology Because we had obtained the unexpectedly rich data, we expanded our primary study aim regarding cultural appropriateness of the measures to also include description of the meaning of the experience of being an African American breast cancer survivor. We decided to do the initial analysis of the focus group data using an empirical phenomenology approach. Focus group data are not traditionally analyzed using phenomenological methods, and use of group data is not consistent with the philosophical underpinnings of phenomenology. We felt the analysis warranted a phenomenological approach based on group-as-a-whole theory. Dorsey (2003) applied the group-as-a-whole theory to the use of phenomenology by proposing that shared personal experiences collectively express group gestalt, or the notion that “the whole is greater than its parts” (Shaffer & Galinsky, 1974). Group- as-a-whole theory posits that the behavior and experiences of individual group members are expressions of the group's collective experience (Wells, 903 1985). Several factors made this approach seem appropriate for this study analysis. First, cancer of any kind, including breast cancer, is often con- sidered taboo within the African American community, so these women had few if any opportunities to talk about their experiences of having breast cancer; they expressed a collective relief at finally being able to share. Second, although collectivism and religiosity are important qualities in African American women, the participants' “we-ness” seemed intensified, because all had breast cancer as a major and life-changing event in common (Guidry, Matthews-Juarez, & Copeland, 2003). Third, the focus group facilitator, an African American with more than 20 years of public health nursing experi- ence, was very skilled at fostering dialogue. Although use of groups for a phenomenological study has been criti- cized (Webb & Kevern, 2001), groups are increasingly recognized as use- ful in phenomenological studies within specific gender or cultural contexts. The cultural and gender importance of relatedness for women is identified as strong rationale for using a group approach. Phenomenological studies using groups have been successfully conducted in the context of women's health issues and health disparities research, specifically with African Ameri- can women (Baldwin, 1996; Cote-Arsenault & Morrison-Beedy, 2001; Ruff, Alexander, & McKie, 2005). Furthermore, the reflections of group-as-a- whole addresses a criticism of the rationale for using groups to improve interaction for phenomenological studies when interaction is not actually being examined (Webb & Kevern, 2001). Colaizzi's (1978) methods of empirical phenomenology analysis, done by the group of scientists and doctoral students, included listening to the focus groups recordings and reading the transcriptions to gain a sense of the whole experience, extracting significant statements, restating them to reflect the language of science, and formulating their meanings. From the meanings, themes were extracted across groups and organized into theme clusters and larger theme categories. An exhaustive, narrative description was developed from the organized themes, then distilled to a description of the essen- tial structure of the experience of breast cancer diagnosis and survival as a holistic reflection of the group of participants. Following the analysis, the description and theme categories were validated by participants or other African American women survivors of breast cancer. Method of Secondary Analysis— Interpretive Phenomenology Although the empirical phenomenology analysis of the data yielded important findings that will be reported elsewhere, the data “cried out” for 904 even further examination within the history and culture of African American women. Interpretive (hermeneutic) phenomenology lends itself to recogni- tion of the “other side” of everyday experiences and allows a venue for the discovery of hidden meanings. A basic assumption in interpretive phenom- enology is that in everyday experiences of people there is an invisible horizon, or that which cannot initially be seen. There is also a horizon of silence, beyond which people cannot initially hear (Ihde, 1976). During initial analy- sis of the data, we observed that the ways in which the participants described their experiences were poetic sounding. African American intercultural com- munication has been described as having a “jazzlike” quality to it, perhaps lending to the ability of the researchers to hear the poetic quality of the par- ticipants' narratives (Hecht, Jackson, & Ribeau, 2003). Interpretive phenomenologists may use a variety of techniques to convey findings, such as the use of metaphor, a production of art, or the creation of a dramatic interpretation of the experience. For the purposes of this inter- pretation, poetry was used as the technique through which to present find- ings to better hear and understand the experiences of African American women breast cancer survivors. Poems were constructed by the first author. As often as possible, the words in the poems were the very words the par- ticipants used when describing their experience of surviving breast cancer, including the use of Black English. The words of participants were com- bined at times to create a single poem of experiences. In one particular poem, participants' words were intertwined with biblical phrases to illus- trate the way in which Bible verses may be used to strengthen and encour- age these women. Occasionally, the first author's own words were used to fill in poetic gaps. Only poems that readily emerged were written. That is, the poem had to flow freely from the words of participants without being a struggle to write it. An example of how data were transformed into poetry is provided (see Table 1). The poems are contextualized within the frame- work of historical, research, and Black feminist views to convey a deeper meaning in interpreting experiences. Poetry as Means of Interpretation Using poetry as a means to interpret research findings is a way to balance the detached view of scientific inquiry with the emotional reaction to the content. Aristotle noted that logic without emotion and emotion without logic could lead to a moral blindness (Hansen, 2004). Therefore, poetry may be used to merge the logic of data analysis with human emotional experiences often expressed in qualitative data. Poetry is an expressive way to examine meanings in life. Poetry can be used to magnify the meanings 905 Table 1 Example of Transcript Data Into Poetry of everyday experiences that may otherwise go unnoticed. Poetry is a per- sonal way to express interpretation of experiences as well as a way to engage the reader. Selincourt (1952) said that “poetry deepens and enriches the sense of life” (p. 19) and that poetry conveys the ofness, or being in the world experiences, rather than solely what something is, removed from the experience (Hunter, 2002). Poetry reveals how persons make sense of and are influenced by their experiences (Hansen, 2004). Through this kind of knowing, care of patients can be informed and changed. From a nursing perspective, poetry is an aesthetic way of knowing (Carper, 1978). Carper stated that aesthetics allowed a way to see how the whole is put together from a myriad of parts. Poetry is a way for nurse researchers to describe human experiences and responses to those experiences (Holmes & Gregory, 1998). What may otherwise have been difficult to express may be presented in poetics and represent more than the lived experience, thus allowing both the researchers and the participants to see and hear that which was not previously available (Holmes & Gregory, 1998). When poetry is used to present data, the very literary devices used in poetry such as “rhythms, silences, spaces, breath points, alliterations, meter, cadence, asso- nance, rhyme, and off-rhyme” (Richardson, 2000, p. 12) draws the reader into data and engages them emotionally to see the world in new ways. Expressing emotions in research is compatible with African American cultural practices. Personal expressiveness, emotion, and empathy are highly valued qualities for conveying African American life experiences (Banks- Wallace, 2000). These qualities are closely linked with well-being, credi- bility, and concern (Banks-Wallace, 2000). African American literature has 906 long been the venue for expression of both joy and sorrow. It is, as Matthews described, “the textual outlet for the unnaturally suppressed inner lives” (as cited in H. Gates, 1988, p. xv) that African Americans have had to lead. African Americans have long used the written word to convey their inner- most thoughts and their support for one another (Armstrong, 2004; Horton & Horton, 2001). In particular, poetry has been “the place for the secret voice—for all that could not be directly stated or named—for all that would-not-be-denied expression” (hooks, 1989, p. 11). Findings Findings emerged in seven groups of poems written from participant data. The poems serendipitously present the African American woman's breast cancer journey from diagnosis to declaration of survival. Poems are presented, followed by brief discussions of the cultural context and consid- erations associated with the topic of the poem. The Beginning That little voice told me go and check my breast. There it was- you see, something to expect- I was diagnosed at 31. The first thing that pop in my mind I'll lose my breast- I'll lose my hair Attractive me- no one will find. Men don't mature as fast as women- I'll probably never marry- “attractive mindset” is different for men. Attractive black women- have a mind and can think; can do certain things are creative and unique. Breasts therefore- cannot be attractive. The journey to cancer survivorship often began with the discovery of a breast lump. Many reports in the literature indicate that African American 907 women are not likely to not find breast cancer until it is in advanced stages, do not monitor themselves for signs of cancer, and ignore symptoms of can- cer (Ashing-Giwa et al., 2004; M. Gates et al., 2001; IOM, 2003; Phillips et al., 2001). Although much previous research has indicated a delay in African American women seeking treatment for breast symptoms, this par- ticular group of survivors seemed to have a keen awareness—a specific watchfulness—for signs of breast cancer. There often was a strong family history of breast cancer for these women; many had mothers or sisters who had died from it. The data indicate that this group of women was quite vig- ilant in looking for and detecting breast lumps, and because of their family history they expected to get breast cancer at some point. After the diagnosis, these women wrestled with the ideal of feminine beauty and how that related to any possible future relationships with men. Male support was an important and desired aspect of surviving breast cancer. In a culture, such as the African American culture, that highly values family, children, and kin net- works, the prospect of breast cancer interfering with the ability to fulfill such dreams as having a family creates a personal crisis (Hill, 1998). Despite all their fears, these women were clear that breasts could not think or make choices, and therefore breasts did not fit their definition of being an attractive Black woman. The women further related that breasts were thought of more as “decorations” appreciated by men. For participants in this study, beauty was found not in breasts, but in a woman's mind. No News is BAD NEWS They sit you in the room. They wait for hours and hours and hours before they tell you anything. No hurry now- I've told myself and I done decided it's BAD NEWS. As the treatment for breast cancer started, the long wait in health care began. There have been other stories relayed in the literature about such long waits, and it seems that culture may be a factor in it. Kavanaugh (2002) described similar periods of waiting by a nurse, Carol Ann Rooks, who had her PhD, who was a transplant patient, and who also happened to be African American. Kavanaugh and Rooks presented this endless waiting in health care systems as a lack of caring. Patients waiting for care were described as objects who became invisible. 908 A Psalm of Survival Which means by the time I was ready for surgery- and the doctor came out- I don't know if I was quoting scriptures- or not. But I do know- before I went under- I was trying to remember those scriptures. I love the Lord- for He heard my voice; He heard my cry for mercy My life is in the Lord's hands. The cords of death entangled me… Must give it to someone else to handle it. Then I called on the name of the Lord: `O Lord, save me!' Doctors just cut- but the Lord heals. For you, O Lord, Have delivered my soul from death God's hand on you calms your mind. The Lord will fulfill His purpose for me; Your love, O Lord endures forever, Do not abandon the works of your hands (intermingled participant statements and chosen Psalms) Faith is an important part of African American culture as a way to rise above and deal with adversity. Faith and its role in African American women's 909 breast cancer struggles have been well documented (Abrums, 2004; Ashing- Giwa et al., 2004; M. Gates et al., 2001; Gibson, & Parker, 2003; Henderson et al., 2003; Hoffman-Goetz, 1999; Lopez et al., 2005; Phillips et al., 2001). The lack of caring found in some health care situations was countered by the women's awareness that even when it seemed no one else cared, God did. The women in this study specifically described ways their faith helped them sur- vive. Memorized Bible verses and prayer were ways to cope with the stress of going to surgery. In this case the coping strategy was a way to transcend the present and dwell in a safe place with God. The women in this study believed that God would protect them by holding them in His hands. As they experienced fear and doubt, the memorized Bible verses were their personal mantras for reclaiming faith in God's protection and blessings. The Pink Ribbon Shield You have to watch when you go to the doctor. Sometimes, they be in a hurry- and they'll grab your arm- they will grab that wrong arm. Wearing my pin- so doctors and nurses can see. “That's the wrong arm to put the IV” and that nurse she wanted to argue with me. “Go check your records” (they don't have time to read my history). Wearing my pin- so doctors and nurses can see. So they put a sign over the bed— No sticks or BPs left arm. Supposed to alert people, help keep me from harm. But they come in the room- do the bed- never looking at me- So they did not see the sign either- Wearing my pin- so doctors and nurses can see. 910 African American women reported many encounters with insensitive health care providers who did not believe the women when they told them not to start an IV in their arm on the same side as the mastectomy or physicians who grabbed their arm on the affected side. Participants in this study were very aware of the risk for lymphedema if procedures were allowed in the arm on the same side as their mastectomy. It is unclear what led to health care providers' lack of knowledge about lymphedema risk or their lack of will- ingness to believe the patient. From experiences such as this, participants' relayed ways they tried to guard themselves from harm. The survivors relayed they used symbolic communication—by wearing a breast cancer survivor pin—to try and remind the health care providers that they had a history of breast cancer. This silent way of communicating what is important is deeply rooted in the history of African American women. The importance of understanding the historical meanings of “socialized silence” in the African American community cannot be overstated. Jordan (1969) commented on this societal silence: “We have lived as careful as a church and prayer in public” (p. 47). Being socialized silent has far-reaching implications. African Americans have been noted to be less than half as likely as Whites to articulate being dissatisfied with their health plans (Schlesinger, Mitchell, & Elbel, 2002). Researchers hypothesized that the silence about health plan dissatisfaction was related to past experiences with discrimination or past difficulties with access to care. African American women in particular have historically been socialized silent. African American women who dared to “talk back,” as hooks (1989) described it, were punished on multiple levels and in multiple ways. Survivors have reported that the price for questioning a health care provider is to be made to feel as if they were crazy for asking (Ashing-Giwa et al., 2004). Silence has been transformed by African American women into a means of control over self and used as energy for the construction of safe internal places (Abrums, 2004). Although silence has been used to build fortresses of protection, Lorde (1997) pointed out, “silence about any area of our lives is a tool for separation and powerlessness” (p. 7). African Americans have been part of and separate from the American society for decades. This separation has led to both strengths and distrust. Silence about cancer is an issue in the African American community. Several studies noted silence about cancer to be a factor in a lack of early cancer screening behaviors and lack of social support within the African American community. Distrust of the health care system is often mentioned as closely related to cultural silence (Ashing-Giwa et al., 2004; Lopez et al., 2005; Phillips et al., 2001; E. Thomas, 2004). 911 ERAC (backwards care) I never thought about the cancer spreading. I cannot believe my ears. Two doctors examining me talking to each other, as if I am not there. I guess I should be glad at least they talk among themselves. It is the only way to get information about myself. Doctor, you act like you're scared to touch me. Is it because I am…. or because you are…. because I am…. African American? Tell me all the side effects what to look for- what to do, In case I go to the hospital and have to take care of myself. Women described additional encounters in which health care providers exhibited behaviors that contributed to distrust. These encounters included being talked about as if the patient were not present and a feeling that the physician did not want to touch the patient because she was African American. These kinds of interactions led these women to believe that it was safer to rely on themselves for care. There are other reports in the literature in which women experienced similar encounters of not being treated as an active participant or partner in their own health care and feelings that health care providers did not want to touch them because they are African American (Fongwa, 2002; M. Gates et al., 2001; E. Thomas, 2004). The myth of the “strong, Black woman” (Beauboeuf-Lafontant, 2005) has been reinforced at many societal levels, including within the African American culture itself. This myth portrays the Black woman as a superhuman being who can overcome any encounter and survive any emotion, all without the support of anyone. The strong Black woman is self-sufficient and never needs assis- tance of any kind. Beauboeuf-Lafontant called for a reappraisal of this myth, 912 because it increases the burden on African American women to remain silent and take care of themselves at any cost. This fatigue is not like a tiredness. It is beyond tiredness. You wash your dishes hanging over the sink- something comes over you. You can do this. You can't even make it. You can wash another dish. I got to sit. You can wash one more dish. I am just so tired. You can wash one last dish. One way in which African American women caring for themselves at any cost may be evident is in regards to side effects of treatment for breast cancer. African American women were not spared the usual side effects associated with treatment for cancer. Fatigue was an overwhelming issue. On the surface, it appears that the experience of fatigue is universal and not different across cultures. Satariano and DeLorenze (1996) did a comparison study of 54 Black women to 244 White women who were posttreatment for breast cancer. African American women experienced greater physical limitations, such as a prolonged decrease in upper-body strength after treatment, which delayed their return to work. More recent research supports the previous research find- ing. Lingering unemployment is significantly greater for African American women when compared with White women post–breast cancer treatment (Bradley, Neumark, Bednarek, & Schenk, 2005). Although there may be as yet undiscovered physiological contributors to the kind of fatigue that interferes with return to prediagnosis level of activities, one contributor to fatigue for African American women may be the commitment they have to physically caring for others. As described in one study, caring for others involved oblig- ations to many people, including family, friends, neighbors, work colleagues, 913 church members, and self (M. Gates et al., 2001). Despite the fatigue it may have caused, however, such caring was described as a positive way to cope with the treatment for breast cancer, and caring for others encouraged African American women in their recovery (Henderson et al., 2003). Although caring for others seemed to assist in recovery, African American women still poignantly described the effects of fatigue on housework. Bourjolly, Kerson, and Nuamah (1999) noted that although a large percent- age of White women who had breast cancer indicated they hired assistance in household chores for a period of time, no African American woman in their study indicated that she hired any help. The researchers were uncertain what variables contributed to the African American woman's greater diffi- culty with return to pretreatment levels of housework and suggested more investigation was needed. I've been through something. It took me a minute to know. The scars are the wounds from the battle. I've been through something. The scars are the birthmarks-renewed life. I've been through something. Ultimately, despite adversity the African American women in this study emerged with a realization and declaration that “I've been through some- thing.” This statement acknowledges the depth of the process of surviving breast cancer. It is a triumph in that the declaration was made. Sojourner Truth made a similar statement many years ago in asking “Ain't I a woman” (hooks, 1981), in recognizing her power as a woman in a world that did not acknowledge that power. That African American women breast cancer sur- vivors could make such a statement allows them a voice and reflection on the whole of their experience. As noted in the poem, this process takes time. It involves a reflective assessment of the diagnosis, treatment, body changes, and struggles deep within the soul that ultimately leads to renewed life. In other words, these survivors have emerged on the other side of cancer, and things look different than they did before the cancer and treatment. Discussion The women in this study have given a glimpse of the journey to survivor- ship. Although some of the experiences are similar to those of all women 914 who have survived breast cancer, the examination of this journey through the lens of interpretive phenomenology may give some insights into impor- tant cultural and historical experiences and questions that have been raised about the African American experience of surviving breast cancer. An acute awareness of one's own self as well as the subtleties of cultural influence is needed to begin to understand the ways in which culture may shape indi- vidual health care encounters (ANA, 1991; Beach et al., 2005; Broome, 2004; Edwards, 2003; Kagawa-Singer & Kassim-Lahka, 2003; Luna, 2002; Mattson, 2005; OMH, 2001; Surbone, 2004). Cancer is a life-changing encounter influenced by persons' cultures. It is not enough to know how to care for persons with cancer; health care pro- fessionals also need to care for patients with cancer in a culturally compe- tent manner. To do this, an environment of cultural safety must be created. Spence (2004) said that cultural safety needs to be considered in any encounter in which there is a power imbalance between the nurse and the patient. Practices of individual health care providers, which stem in part from the philosophy and ethics of the institution for which they work, need to be recognized as to how they influence the ability to be culturally compe- tent and create cultural safety (Luna, 2002; Polaschek, 1998). As mentioned in the beginning of this article, cultural competence is about rigorous self- examination and learning, which affects knowledge, attitudes, and skills. The findings in this study may be used to improve culturally competent care for African American women with breast cancer. The women in this study were accurate in their self-discovery of breast cancer and in health care practice African American women's concerns about breast cancer need to be carefully attended. Practitioners should take great care to document family histories and past experiences of breast cancer for African American women. Once breast cancer is diagnosed it is particularly important that, through- out the continuum of care, relationships with significant others are discussed. Too often African American women are assumed to be strong and able to handle this life crisis on their own. The importance of finding ways to assist males—fathers, brothers, husbands, or friends—to provide support is impor- tant and provides a different kind of support than is given by other women. Body image should be addressed and its impact on life assessed. It is impor- tant to ask about how African American women view feminine beauty. The women in this study made clear that their ideal of feminine beauty was not linked to physical attributes, and these are the ideals to reinforce as others begin the journey of breast cancer survival. In the weeks and months of diagnosis and treatment, it is essential that health care providers not become so accustomed to routine that they forget 915 the impact that waiting can have on a patient (Kavanaugh, 2002). African American patients may internalize the waiting into BAD NEWS, which may affect their ability to trust care a health care system that is insensitive to the difficulty of waiting. Communication about the processes of diagnosis and treatment that require waiting may help to alleviate concern and increase trust. Spiritual assessment remains an important factor in the care of African American women. In this study, many women memorized Bible verses to cope with the stress of surgery for breast cancer. Health care profession- als could inquire as to any especially meaningful verses and ask if it would be helpful to repeat any of the verses with the patient. Perhaps it could be a way to provide a partnership of trust as the patient is put under anesthesia and as she wakes up from anesthesia, hearing Scriptures that are personally comforting to her. An assessment of symbolic communication is another way health care providers may create a trusting environment. Noticing symbols of communi- cation, such as survivors' pins, opens up possibilities for the creation of cul- turally sensitive and safe environments. The knowledge that African American women may be reluctant to speak up or ask questions should be of great con- cern for health care providers (Ashing-Giwa et al, 2004; Lopez et al., 2005; Phillips et al., 2001; Schlesinger et al., 2002; E. Thomas, 2004). Any ques- tions asked need to be carefully attended to and accepted as the individual's right to ask, no matter the question. An understanding of the history of social- ized silence should cue health care providers to a high level of sensitivity in communication patterns. A further realization that there may be few other places African American women can freely talk about their cancer experi- ences is essential (Ashing-Giwa et al., 2004). The assessment of side effects of treatment is another imperative for health care professionals. There are valid reasons to suspect that African American women may experience more profound side effects from cancer treatment than White women (Bradley et al., 2005; Satariano & DeLorenze. 1996). Evaluation of their employment and household demands may assist in iden- tifying coping strategies, social support, and opportunities for the health care professional to advocate. A culturally competent health care profes- sional will not mistake African American women's silence and stoicism as meaning she is not having any problems (Beauboeuf-Lafontant, 2005). Care for the African American survivor of breast cancer does not end after diagnosis or treatment for the cancer. Health care professionals need to acknowledge the experience as a whole. Reflection about this whole experi- ence should be encouraged for African American women to consciously “reach the other side of cancer,” which is survival and beyond. Emotional expressions of the experience should be supported and encouraged. The use 916 of words, songs, and poetry may be culturally relevant ways of reflecting on this life-changing event. The women in this study somehow found their way through cancer to sur- vival. The eloquence of their words led us to a greater understanding of their experiences from a cultural perspective. 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<titleInfo lang="en">
<title>“I've Been Through Something”</title>
<subTitle>Poetic Explorations of African American Women's Cancer Survivorship</subTitle>
</titleInfo>
<titleInfo type="alternative" lang="en" contentType="CDATA">
<title>“I've Been Through Something”</title>
<subTitle>Poetic Explorations of African American Women's Cancer Survivorship</subTitle>
</titleInfo>
<name type="personal">
<namePart type="given">Wendy Carter</namePart>
<namePart type="family">Kooken</namePart>
<affiliation>Bradley University,</affiliation>
<affiliation>E-mail: wkooken@bradley.edu</affiliation>
</name>
<name type="personal">
<namePart type="given">Joan E.</namePart>
<namePart type="family">Haase</namePart>
<affiliation>Indiana University School of Nursing</affiliation>
</name>
<name type="personal">
<namePart type="given">Kathleen M.</namePart>
<namePart type="family">Russell</namePart>
<affiliation>Indiana University School of Nursing</affiliation>
</name>
<typeOfResource>text</typeOfResource>
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<placeTerm type="text">Sage CA: Los Angeles, CA</placeTerm>
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<dateIssued encoding="w3cdtf">2007-11</dateIssued>
<copyrightDate encoding="w3cdtf">2007</copyrightDate>
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<abstract lang="en">This article describes common experiences of African American women breast cancer survivors through poetic analysis. Group-as-a-whole theory and empirical and interpretive phenomenology guided analysis of transcripts from three focus groups (n = 21) of African American breast cancer survivors. Familiarity with transcripts and themes led to awareness of poetic ways in which African American women described experiences. Black feminist literature and African American historical references contextualized survivors' experiences. Poetic interpretations of African American women's breast cancer experiences, from diagnosis to survivorship, were created from transcript dialogues. Verbatim words were used to construct the poems, as often as possible. Eleven poems describe the journey from diagnosis to survivorship as experienced by African American women. The poetry may raise levels of awareness of African American women's breast cancer survivorship experiences. Attention to subtleties that underpin culture within the context of health care environments may help health care providers to improve cultural competence.</abstract>
<subject>
<genre>keywords</genre>
<topic>African American</topic>
<topic>cancer survivors</topic>
<topic>breast cancer</topic>
<topic>cultural competence</topic>
<topic>disparities</topic>
</subject>
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<title>Western Journal of Nursing Research</title>
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<genre type="journal">journal</genre>
<identifier type="ISSN">0193-9459</identifier>
<identifier type="eISSN">1552-8456</identifier>
<identifier type="PublisherID">WJN</identifier>
<identifier type="PublisherID-hwp">spwjn</identifier>
<part>
<date>2007</date>
<detail type="volume">
<caption>vol.</caption>
<number>29</number>
</detail>
<detail type="issue">
<caption>no.</caption>
<number>7</number>
</detail>
<extent unit="pages">
<start>896</start>
<end>919</end>
</extent>
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<identifier type="DOI">10.1177/0193945907302968</identifier>
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