Hispanic Health Care International, Vol. 13, No. 2, 2015

© 2015 Springer Publishing Company http://dx.doi.org/10.1891/1540-4153.13.2.86

Understanding the Experience of Dominican American Women Living With Late-Stage Breast Cancer: A Qualitative Study Alsacia L. Pacsi, DNS, RN, CEN, CCRN, FNP Columbia University School of Nursing, New York, NY Hispanic women between the ages of 35 and 44 years who are often diagnosed with larger and more invasive malignant breast tumors have poorer outcomes and a higher mortality rate compared with non-Hispanic White women. Yet, there is a paucity of qualitative research focused on the lived experience of specific ethnic subgroups. The goal of this descriptive phenomenological study was to gain in-depth insight regarding late-stage (Stage IV) breast cancer experience from Dominican American women. The results of this study provide preliminary information to interdisciplinary health care providers on the impact this illness has on the participants’ lives and the role culture plays in helping these women cope. Implications for nursing research and practice are discussed. Las mujeres hispanas entre las edades de 35-44, a menudo son diagnosticados con tumores malignos de mama más grandes, más invasivos, tienen resultados más pobres, y una tasa de mortalidad más alta en comparación con las mujeres blancas no hispanas. Sin embargo, hay una escasez de investigación cualitativa se centró en la experiencia vivida de los subgrupos étnicos específicos. El objetivo de este estudio fenomenológico descriptivo fue conocer en profundidad con respeto a la última (etapa IV) experiencia con el cáncer de mama de las mujeres estadounidenses Dominicana. Los resultados de este estudio proporcionan información preliminar a los proveedores de salud interdisciplinarios sobre el impacto que esta enfermedad tiene en la vida de los participantes y el papel de la cultura en ayudar a estas mujeres a lidiar. Se discuten las implicaciones para la investigación y práctica de enfermería. Keywords: Dominican American women; qualitative study; late-stage breast cancer; Giorgi’s methodology; motherhood

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reast cancer is the most frequently diagnosed and number one cause of cancer death in women globally (World Health Organization, 2012). The American Cancer Society (ACS, 2013) reported 232,340 new cases of late-stage breast cancer. Of these, 15 per 100,000 Hispanic women between the ages of 35 and 44 years died from this disease (ACS, 2013; Surveillance, Epidemiology, and End Results [SEER], 2013). Hispanic women are more often diagnosed with larger, more invasive malignant breast tumors, have poorer outcomes, and a higher mortality rate compared with non-Hispanic White women (Centers for Disease Control and Prevention, 2009; Harper et al., 2009; John et al., 2007; SEER, 2013; Yanez, Thompson,

& Stanton, 2011). The incidence and mortality rates for Hispanic women with Stage IV breast cancer are reported collectively and do not specify the subgroups that fall under this classification. Health-related research studies to date have primarily been done on White, European, and Western middle-class women; ethnic minorities from diverse cultures have been underrepresented (Adams et al., 2011; Fisher & O’Connor, 2012; McIlvane, Baker, Mingo, & Haley, 2008; Ness et al., 2013). To date, no qualitative studies have been done that focus on understanding the lived experience of Hispanic women, specifically self-identified second-generation Dominican American women, living with late-stage breast cancer. 86

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Background

Several research studies have explored body image, psychological effects, quality of life, and social support of women living with breast cancer using qualitative methodologies (Ashing-Giwa, Padilla, Bohórquez, Tejero, & Garcia, 2006; Drageset, Lindstrom, & Underlid, 2010; Sammarco & Konecny, 2008, 2010; Thomas-MacLean, Miedema, & Tatemichi, 2005). These studies speak to the physical and emotional turmoil women experience when dealing with advanced breast cancer. Only one study addressed living with breast cancer within the context of motherhood, focusing on the challenges faced when balancing both being a parent and a patient (Fisher & O’Connor, 2012). That study focused on Australian women, who were found to be very conflicted in the two roles. Few studies have focused on the influence that culture plays on the lived experience of the Hispanic diagnosed with breast cancer (Ashing-Giwa et al., 2006; Buki et al., 2008; Flórez et al., 2009). To date, there are no descriptive phenomenological qualitative studies that have aimed to capture the lived experience of self-identified second-generation Dominican American women living with this illness. Therefore, the purpose of this study was to gain a greater understanding of this subgroup of Hispanics living with Stage IV breast cancer.

The leading cause of cancer death among Hispanic women is breast cancer (ACS, 2013). Disparities in younger women’s breast cancer diagnosis, staging, and mortality rates persists with Hispanics having the highest rate of estrogen receptornegative/progesterone receptor-negative, 2.4 increases compared with non-Hispanic White women (Ooi, Martinez, & Li, 2011). In addition, other studies have found that young Hispanic women with low acculturation from lower socioeconomic groups are at a higher risk of being diagnosed with late-stage breast cancer compared with Hispanic with higher acculturation and health insurance related to differential screening use (Richardson et al., 1992). In contrast, a more recent study indicated that too much emphasis is placed on demographic variables, and there is a lack of consensus on the appropriate scale question to address the validity of acculturation in relationship in determining health care beliefs and screening of Hispanic women (Villar, Concha, & Zamith, 2012). Recent studies recommend that more research should be focused on understanding the breast cancer experience from a cultural perspective (Graves et al., 2012; Kim, 2014; Yusuf, Ab Hadi, Mahamood, Ahmad, & Keng, 2013). Consequently, diverse quantitative and qualitative research studies have been published related to living with late-stage breast cancer and the physical, psychological, and social impacts of the disease and its impact on quality of life (Butt et al., 2008; Haas, 2011; Mosher et al., 2013; Sekse, Råheim, Blåka, & Gjengedal, 2012). Research studies have also addressed the challenges with which women with late-stage breast cancer have to cope regarding medical/surgical procedures, medication side effects, and realistic concerns centering on work and family responsibilities (Cardoso et al., 2002; Pagani et al., 2010). Additional studies confirm that receiving the diagnosis of late-stage breast cancer often elicits feelings of shock, anxiety, fear of the treatment modalities, and the idea of suddenly having to face their own mortality (Buki et al., 2008; Campos, Besser, & Blatt, 2012; Sheppard et al., 2008; Weitz, Fisher, & Lachman, 2012; Yusuf et al., 2013). The diagnosis can have devastating effects on women physically, emotionally, and spiritually as they adjust to living with this illness (Chunlestskul, Carlson, Koopmans, & Angen, 2008; Logan, Hackbusch-Pinto, & De Grasse, 2006; Perreault & Bourbonnais, 2005). In addition, the influence spirituality has on helping women dealing with the stress that this illness evokes as well as their self-esteem related to body disfigurement and premature menopause, personal relationships with spouse and family members, and genetic influences that may play a significant role in developing breast cancer has been studied (Logan et al., 2006; Ooi et al., 2011). Spirituality also appears to provide strength and give their lives meaning, enabling women diagnosed with late-stage breast cancer to make the necessary adjustments to foster healing and improve their quality of life (Logan et al., 2006).

Philosophical Framework Giorgi’s (1999, 2005) existential phenomenological framework guided this study. His method of analysis stemmed from Husserl’s philosophical framework, which was made up of three concepts: intentionality, epoché, and intersubjectivity (Husserl, 1913/1972). Intentionality referred to the intentional act of revealing the experience through the participants’ naive narrations. Epoché, or bracketing, required me to set aside my biases, ideas, personal knowledge, beliefs, and preconceptions to reflect on the content that participants presented. The third step, intersubjectivity, acknowledged that people’s shared experiences go beyond materialistic things; therefore, I had to be open to the experience and see it through the participants’ lens. This was achieved by being focused and paying attention to the participants’ naive narratives and perceptions to create meaning from their experiences (Husserl, 1913/1972; Karlsson, 1993). Giorgi (1999, 2005) modified Husserl’s phenomenological method of analysis and systematized it so it could be used in the human sciences and nursing. Giorgi (1999, 2005) emphasized the importance of looking at the total picture or wholeness of the phenomenon—not just the frequency of individual elements. He developed a phenomenological method of analysis and systematized it so it could be used in the human sciences and nursing (Giorgi, 1999, 2005). Using his five-step methodology, I (1) listened to the audio recordings and 87

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simultaneously read the complete description of each participant’s naive narratives to become more familiar with each woman’s story and get a sense of the total picture; (2) re-read the transcripts only, set apart the themes, which are common threads from each participant’s description of the phenomenon being investigated; (3) grouped similar themes together to reveal the psychological insight, and created the transformation of meaning units written in terms familiar to nurses. This process entailed going back and forth to the data and using the process of free imaginative variation, which addresses the rigor, validity, and reliability of the study (Giorgi, 1999, 2005). This facilitated (4) the creation of the synthesized transformed meaning units, which defined the essences, and I was then able to describe the participants’ collective overall meaning of their experiences of living with late-stage breast cancer. And lastly, I (5) formalized a compatible description of the overall meaning and structure of the lived experience of self-identified second-generation Dominican American women living with late-stage breast cancer. Generalization of the human experience related to the phenomenon under study and was referred to as the overall structure of the experience. Using Giorgi’s methodology, I was able to stay focused and make meaning of participants’ experience collectively. This process stirred my conscious awareness and enabled me to describe and gain a greater understanding of the Dominican American women living with late-stage breast cancer.

Common ideas, in the participants’ words within the highlighted phrases, were clustered and became identified as meaning units. The meaning units were blocks of words or phrases that expressed self-contained meaning related to recurrent topics that surfaced repetitively during the analysis related to the research question (Giorgi, 1999, 2005; Munhall, 2007). These themes were then translated into nursing language, referred to as synthesized transformed meaning units. Synthesized transformed meaning units were created by looking at and grouping key terms that the participants expressed when describing their experiences; (3) examined the previously determined meaning units, removed redundancies, clarified and elaborated by relating them to each other to get a sense of the whole; (4) reflected on the synthesized meaning units and pulled out the core meaning from the participants’ experiences and identified the essences. The definitions of the essences were derived from the integration of themes specific to the essences listed and then synthesized to create and describe an overall meaning of the experiences; and (5) formalized a compatible description of the overall meaning and structure of the experiences by combining and incorporating the insights attained in the previous step.

Sample A purposive sample was used in this study. Participants who met the inclusion criteria were recruited from a regional comprehensive outpatient cancer outreach center in New York City: (a) second-generation U.S.-born women of Dominican immigrants, (b) 21 years of age or older, (c) spoke fluent English, (d) were diagnosed 1–5 years with Stage IV breast cancer, (e) were receiving adjuvant therapy, and (f) resided in the New York City area. The exclusion criteria were: (a) native and/or first-generation Dominican American women, (b) younger than 21 years of age, (c) not fluent in English, (d) previous history of breast cancer, (e) medically diagnosed as terminally ill, and (f) not residing in the New York City area. The data collection was based on the principle of saturation (Morse, Barrett, Mayan, Olson, & Spiers, 2002; Munhall, 2007). Therefore, the number of participants was not predetermined. Ten self-identified second-generation Dominican American women were eligible to participate in this study. Saturation was reached after the fifth conversation, and then I held one more conversation with a participant to verify saturation had been reached. The sixth conversation served to reveal that no new information or categories emerged (Munhall, 2007). The Guba and Lincoln (1981) criteria for qualitative research were used to strengthen the study rigor. The trustworthiness of the study was accomplished by establishing credibility, dependability, confirmability, and transferability. The methods used to ensure trustworthiness were audiotaping of the conversations,

Methods Design Giorgi’s (1999, 2005) methodology enabled me to systematically analyze and capture the whole meaning of the participants’ experience, considered coresearchers, by asking each participant to describe her experiences living with late-stage breast cancer. Prior to analyzing the data, I assumed a phenomenological frame of mind, meaning, I bracketed or epoché my biases, ideas, personal knowledge, beliefs, and preconceptions of the phenomenon under study to view and reflect on the content that the participants presented with fresh eyes (Giorgi, 1999, 2005; Husserl, 1913/1972; Karlsson, 1993). This process prepared me to view the data collected objectively within its own context without being judgmental. Then, I proceeded to apply Giorgi’s methodology and took the following steps: (1) listened to and read all naive narratives of the participants’ lived experiences with late-stage breast cancer straight through to get a sense of the whole picture being presented; (2) re-read all the naive narratives line by line and systematically determined each time a transition in meaning took place. I did this by marking phrases in different color highlighters and removing the redundancies in the narratives to facilitate clarification. 88

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peer debriefing, extensive review of transcriptions, committee member checks regarding the data collection interpretations, and journaling. I also used my sensitivity, creativity, and flexibility to maintain focus throughout the process of systematically checking and fitting the data and the conceptual work of analysis. Interpretation was constantly monitored and confirmed by fellow expert committee members. In addition to my analysis critique, two other research committee members, experts in the field of qualitative research, read the narratives. The purpose for this was not just simply to obtain consensus but also to create a broader analytical space. My aim was to reach an eventual 100% agreement regarding the analysis, formulation of the themes, synthesized transformed meaning units, and naming of the essences unfolded. We all agreed with the themes, synthesized transformed meaning units, and three of the four essences. There was disagreement regarding the first essence during the first round of discussing how that particular essence unfolded. We discussed our disagreement, revisited and reevaluated the written narratives, audiotapes, and notes that were written after every meeting and reached a consensus to change the name of the essence from living in the present to uncertainty.

Two oncology bilingual self-identified Dominican female outreach workers at the center reviewed the patients’ database, identified potential participants, and informed them of the study. Women who were interested in participating contacted me by telephone. I then met with each participant individually and reviewed the demographic data. I emphasized that participation in the study was completely voluntary and no harm or withholding of treatment would occur if the participant decided not to participate. Any questions and/or concerns the woman had regarding the study were addressed at this time, consent was obtained, and the conversation ensued. The 90-min conversation with each participant was semistructured and centered on the participant’s experience living with late-stage breast cancer. To ensure the participants’ anonymity, their names were removed from all the recordings and transcripts and were color-coded. The audiotapes, along with all the study documents, were placed in a locked file in my office.

Procedure The participants who met the inclusion criteria were selfidentified second-generation English-speaking Dominican American women diagnosed with Stage IV breast cancer. They were six Dominican American women that had been diagnosed 1–3 years. The participants’ age range was from 30 to 45 years. The participants’ level of education varied. All had dependent children living at home whose ages ranging from 2 to 25 years at the time of their diagnosis (see Table 1). Because of the diagnosis, four of the participants underwent total bilateral radical mastectomies with lymph node removal and breast reconstruction. One of the six required right total mastectomy with lymph node removal,

Ethical Consideration Institutional review board approval was received from the Graduate Center of City University of New York. Because the research did not require access to the participants’ medical records, only a written invitation and collaboration from a medical oncologist affiliated with the regional comprehensive outpatient cancer outreach center from which the participants were recruited was required. TABLE 1.  Participants’ Demographics Namea

Age (Years)

Marital Status

No. of Years Since Diagnosis

Anna

30

Married

2

Carmen

40

Married

1

Delia

43

Married

 1.5

Rosa

45

Married

3

Juana

37

Married

Laura

40

Married

Level of Education

Children’s Gender and Age (Years)

High school graduate

Girl—11

High school graduate

Girl—7

4-year college graduate

Two Girls— 13 and 15

Boy—2

Boy—9

aNames

Community college graduate

Three Boys— 3, 18, and 25

 1.5

4-year college graduate

Two Girls—5 and 10

1

4-year college graduate

Three Boys—3, 13, and 15

are fictitious. 89

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TABLE 2.  Synthesized Transformed Meaning Units and the Essences

and one required lumpectomy of the affected breast. All were receiving adjuvant therapy at the time of this study. The conversations were mostly in English; however, when some of the participants became emotional they would speak briefly in Spanish. I was able to understand the participants when they spoke Spanish. All the conversations were audiotaped and then transcribed by a professional transcriber who was fluent in English and Dominican Spanish. There were no translation challenges. The duration of each conversation was 90 min. Openended questions were posed, which facilitated rich data collection. This approach appeared to help them relax and voice their experiences freely, which enabled me to capture the essences and overall structure of the experience. The dialogue began by asking each participant, “What is your personal experience living with advanced breast cancer?” Additional questions were asked to clarify or seek more information during the conversation (“Can you tell me more about that?” “What do you mean by . . . ?” “How did you feel when . . . ?”). All the questions centered on what it was like to be living with late-stage breast cancer. Clarification, mirroring, reflection, and acknowledgment were used to continue the exploration of the participants’ lived experience.

Synthesized Transformed Meaning Units

Essences

I   Expressing vulnerability regarding the  diagnosis

Uncertainty

  Thinking of where the cancer will   spread next II   Accepting the diagnosis of breast  cancer

Coping

  Setting priorities   Making informed decisions regarding  treatments   Enduring the pain and adverse effects   of adjuvant therapy   Emphasizing the need to comply   with the treatment   Focusing on maintaining a positive  attitude

Data Analysis

  Adjusting to the change in image

The audiotapes were transcribed verbatim by a professional within a few days postconversation. The data were analyzed using Giorgi’s (1999, 2005) five-step human scientific phenomenological method. It provided a structured, systematic, and rigorous approach that facilitated the analysis. I (1) read the transcriptions of the participants’ naive narratives to get a sense of the entire picture being presented; (2) reread the naive narratives looking for redundancies and color coded the transitions in meaning that occurred to identify meaning units; (3) examined the previously determined meaning units for redundancies, clarification, and elaboration by relating them to each other to get a sense of the whole; (4) reflected on the data and created the synthesized transformed meaning units which were used to define the essences of the participants’ experiences; and lastly, (5) formalized a compatible description of the overall meaning and structure of the lived experience of self-identified second-generation Dominican American women with late-stage breast cancer.

  Making dietary changes III   Enjoying life to its fullest

Loving

  Participating in children’s lives   Accepting support from family,   friends, and health care providers   Promoting breast cancer awareness   Helping women in similar situations IV   Emphasizing the power of prayer to   release fear

Believing

  Relying on their faith and hope to   help them fight the breast cancer   Trusting in God to help them leave a   legacy for their children   Stressing that they control their own  destiny

Results

  Knowing that they could live   productively with the illness

Twenty-two meaning units were identified from the analysis of the transcripts and recordings. Then the synthesized transformed meaning units were created, and the four key essences that unfolded were uncertainty, coping, loving, and believing. Table 2 summarizes the synthesized transformed meaning units/themes and the essences. These essences will be described in detail. To protect the participants’ identities, the names assigned to these the quotes are fictitious.

Essence I: Uncertainty Women expressed concern and vulnerability regarding the cancer diagnosis and where the cancer would spread next. This unknowing toward the future defines the essence of uncertainty. For example, “After several surgeries and 90

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radiation therapy, I’m presently receiving chemotherapy. Dealing with the nausea, vomiting, fatigue, weight, and hair loss has not been easy. However, wondering if and when the cancer will return is even worse” (Carmen).

the diagnosis. Loving to these women also involved stepping outside themselves to promote breast cancer awareness and help others in similar situation. For example, I would endure and do anything to stay healthy for my children. I’m savoring every moment with them. When I do die all they will have to do is close their eyes, think of me to realize that our bond will last forever. (Juana)

I just thought it was a little cyst or something that I felt on my breast. I have no history of breast cancer in my family. I thought I was too young to get breast cancer. I thought women over 40 got it. I waited a year before I went to have the doctor examine it. I could not believe it when he gave me the diagnosis. I regret not having gone sooner to check it out. Now, I often think where is it going to spread next and how much more will it affect my life. (Anna)

Right now my focus is my children. I make sure that I spend as much time with them as possible. Every day is a special day when I am with them. I look at it like I’m tending to my garden. I pull out the weeds, plant the seeds, water the soil, and the result will be a beautiful garden. I make sure that they learn and eat healthy food to feed their little bodies and have prayer to feed their souls. (Anna)

I had a follow-up MRI 2 weeks ago and the tumors, about eight of them, I had in my lungs were no longer there! When we got the results, there was not a dry eye in the room. I know this is good news, however, in the back of my mind I’m thinking when will they return. (Laura)

What gives me strength to deal with the surgery, chemotherapy, and everything else are my child. I make sure to tuck her in at night, sing her favorite songs, make her favorite meals and let her know how much I love her. I want to be here until she’s at least a teenager, this way she can draw from our conversations in the good times and the bad times; always remembering how much I loved her. My dream is to celebrate her quinceanera (Sweet 15th birthday). (Carmen)

Essence II: Coping The essence of Coping was described as not passively accepting the diagnosis but rather setting priorities, making informed decisions about the treatments, enduring the adverse effects of treatments, maintaining a positive attitude, adjusting to changes in body image, and making extensive dietary changes. For example, “I’ve had this illness for a while now since my diagnosis and every day is a gift. This I believe is because I focused on today, not yesterday or tomorrow but today.” (Juana)

What helped me stay focused at the time I received the diagnosis I immediately thought of my children; I can’t leave them! Frankly, they are my reason for living. So if I have to deal with this for us to continue with our lives, so be it. I cherish each moment I have with my children. (Rosa)

I received the diagnosis and dealt with the situation head on. I’ve had surgery and now chemotherapy. My fear is that if we don’t attack this cancer aggressively, I will not have a chance and that is not an option . . . the bottom line is that this cancer will not take me away from my children and family; not if I can help it! (Delia)

What helped me stay focused was that at the time my daughter was 5 years old. I couldn’t bear the thought of leaving her so young and vulnerable. I chose the treatment that the doctors recommended that was most aggressive because I felt this would increase my chances of living longer and see my child grow . . . to give me 10 to 15 more years in my daughter’s life. (Carmen)

The interdisciplinary team that is helping me fight this cancer is amazing. It is comforting to know that they are all aware of my condition. Not having to repeat myself when I go for follow-up visit is a very good thing. We discussed my treatment options and I feel I have more than enough information to make an informed decision regarding my treatment plan. The health care providers see me as a human being not a scientific experiment. They make every effort to schedule my appointments at times that are convenient for me, not the other way around. (Juana)

Essence IV: Believing The essence of believing was defined as knowing that there exists a power greater than them, emphasizing the power of prayer, realizing faith, and hope are vital in fighting cancer, stressing the control of their own destiny, and feeling the need to create memories for their children and leave a legacy. This spiritual belief provided the strength to face and deal with the challenges of treatment and side effects while focusing on living in the present and enjoying every moment. All the participants emphasized the power of prayer. However, their approach varied in dealing with their illness.

When you get a diagnosis of cancer and you have children you have two options: Worry about what is to come and obsess on what ifs or simply focus on the present. The choice is obvious. I can only control today and our time together; that gives me strength and peace of mind. (Rosa)

I always relate health to my faith. I pray often. My confidence in battling this illness is rooted in faith, hope, and love for my children. I speak to God constantly. This helps me deal with my illness and the other things that are going on in my life. I know we were put here by a higher power, whether we refer to it as God, Allah, Om; the name is not

Essence III: Loving The essence of Loving was described as actively participating in children’s lives, nurturing, protecting them. The emphasis was to create memories by living life to its fullness despite 91

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living in the present enabled them to maintain a positive outlook (Fisher & O’Connor, 2012; Weitz et al., 2012).

important. You have to have faith in a higher power that you connect with and lay your burdens on. I surrender to my God and said, “Father, if I have to deal with this illness choose the doctors and institution where I am bound.” And so it went, I found the right doctors and have a great health care team that informed me of the choices of treatments that were available. I took the treatment that was best for the type of aggressive cancer I have. If God did not want me to have the treatment, he would not have let them develop it. (Delia)

Coping Participants talked about coping with fear and frustration. The definitions of coping were derived from the themes, which were accepting the diagnosis of breast cancer, setting priorities, making informed decisions regarding treatments, enduring the pain and adverse effects of adjuvant therapy, emphasizing the need to comply with the treatment, emphasizing the need to maintain a positive attitude, adjusting to the change in image, and making dietary changes. When these themes are integrated, the resulting essence can be described as accepting the diagnosis in a way to promote thinking that results in positive changes and healthy choices. Previous studies have varied outcomes. For example, younger women diagnosed with breast cancer, particularly immigrant women, expressed experiencing increased psychosocial distress, poor access to health care, prejudice and misunderstanding by health care providers, role conflict, poor quality of life and feeling of fatalism (Campesino, Ruiz, Glover, & Koithan, 2009; da Costa Vargens & Berterö, 2007; Fisher & O’Connor, 2012; Flórez et al., 2009; Francis, 2011; Nápoles, Ortíz, O’Brien, Sereno, & Kaplan, 2011). In addition, other studies found that Spanish-speaking Hispanics were reported to be 5.5 times more dissatisfied with the care they had received, as well as feeling uncertain and regretful in relation to the decisionmaking process, than were Whites (Flórez et al., 2009; Harding, 2008; Molina et al., 2014). This is supported by other findings that show that European women appear to cope more effectively with breast cancer and focused on maintaining a hopeful and positive attitude to promote coping mechanisms and find meaning and purpose (Mosher et al., 2013; Weitz et al., 2012).

When you come down with this illness, you realize that what is most important. Material things can be replaced but one’s faith is priceless, for me now more than ever. My faith helps me stay focus on the prize . . . to be cancer free. (Laura)

The earlier mentioned data provided the foundation and insight which facilitated the formulation of the compatible description of the overall meaning and structure of their experience, which indicated that the participants in this study were well informed regarding their illness, had trust in their interdisciplinary health care team, made informed decisions, and adhered to the various forms of surgeries and adjuvant therapy. In addition, they readjusted their lives as a way of dealing with uncertainty and knowing, accepting, and confronting the diagnosis in such a way so that their thinking resulted in positive changes and healthy choices. All in an effort to promote well-being and give them more time with their children to create a legacy of love.

Discussion This is the first descriptive phenomenological qualitative study centering specifically on self-identified Dominican American women living with late-stage breast cancer, using Giorgi’s (1999, 2005) rigorous methodology. Participants’ naive narratives enabled me to pull out the themes and create the meaning units using the participants’ terminology. Once this was done, I then took the meaning units and created synthesized transformed meaning units using a nursing perspective. The following discussion will center on the four essences that unfolded.

Loving Participants expressed positively influencing their children and future generations of Dominican women. The definition of loving was derived from the themes, which were enjoying life to its fullest; participating in children’s lives; accepting support from family, friends, and health care providers; promoting breast cancer awareness; and helping women in similar situations. This process enabled them to not only focus on their well-being but also to reach out and participate in increasing breast cancer awareness and promoting health so that other women could learn from their experiences. An integration of these themes resulted in the essence of loving, which is described as enjoying life through the meaningful participation in the lives of others and accepting support. These findings coincide with other studies that affirmed that Dominican women do in fact use breast cancer screening and perform self-breast exams on a regular basis and have greater expressed satisfaction when they collaborate with

Uncertainty Participants talked about coping with their fears and frustration. The following definition of uncertainty was derived from the themes: expressing vulnerability regarding the diagnosis and thinking of where the cancer will spread next. When these two themes are integrated, the resulting essence can be described as a feeling of vulnerability and unknowing toward the future. These findings are similar to previous study findings. Participants used words such as uncertainty, fear, anxiety, and worry interchangeably when expressing concerns regarding recurrence and/or progression of the illness and expressed that 92

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the health care team and participate in shared decision making (Ashing-Giwa et al., 2006; Cato, Hyun, & Bakken, 2014; Flórez et al., 2009).

nurtured their inner strength and propelled them to face the illness head on. In addition, they stated that their identity as mothers and the role they played in their children lives was heightened when they “came down with breast cancer.” Therefore, they would do anything in their power to combat the disease to insure that it did not interfere with their relationship with their children. This belief was directly linked to the cultural construct related to familismo and the maternal role of Dominican women in their families. The cultural construct of familismo is defined as cluster of beliefs, attitudes, values, and norms shared by those of Hispanic heritage. Familismo plays a vital role in the formation of a worldview, personal and family decision making, and context-specific behaviors related to parenting practices (Coohey, 2001). Familismo also refers to the loyalty, attachment, and relationships among family members, including nuclear and extended family, and close family friends that play a vital role in the upbringing of children (Contreras, Mangelsdorf, Rhodes, Diener, & Brunson, 1999; Sue & Sue, 2003). In this study, the context of familismo and role of self-identified secondgeneration Dominican American mothers diagnosed with late-stage breast cancer was amplified and centered on strengthening the bonds with their children. What the participants discovered was that their children nurtured their inner strength to cope with this illness. Nurses can ask women about their children, their families’ concerns, and the challenges they are facing and make appropriate referrals as necessary. Acknowledging women’s concerns when faced with late-stage breast cancer will foster healing, promote effective adaptation, and promote well-being (Roy & Andrews, 2010). Future qualitative studies should be conducted on other ethnic groups to discover if there are similarities and differences compared to this study.

Believing Participants expressed believing in God and drawing from their faith for strength. The definition of believing was derived from the themes, which were emphasizing the power of prayer, believing that faith and hope are vital in fighting cancer, trusting in God to help them leave a legacy for their children, believing that they control their own destiny, and knowing that they could live productively with the illness. Integrating these themes, the resulting essence is described as trusting in God through prayer, faith, and hope will help them fight the cancer to create everlasting memories for their children. These studies are consistent with the literature that indicates that believing in a higher power fosters a sense of hope and strength required to effectively deal with their illness more effectively (Manuel et al., 2007; Nedjat-Heim, Lorenz, Ell, Hamilton, & Palinkas, 2012; Roy & Andrews, 2010; Schulman-Green et al., 2011). Using the final phase of Giorgi’s (1999, 2005) method, a compatible description of the overall meaning and structure of the experience by combining and incorporating the insights attained in the previous step was formalized. To accomplish this phase, the definitions of the essences were derived from the integration of themes specific to the essences listed and then synthesized to create and describe an overall meaning of the experience. From the data findings, the following recapitulates the meaning of the lived experiences of Dominican American women with Stage IV breast cancer: One of uncertainty and unknowing; accepting the diagnosis so that thinking results in positive changes and healthy choices; enjoying life through the meaningful participation in the lives of others and accepting support; trusting in God through prayer, faith, hope, to create everlasting memories for their children and leave a legacy of love. In contrast, other studies suggest that other women diagnosed with late-stage breast cancer, of different ethnic and racial backgrounds, experience challenges in dealing with the illness, stigmatization by community, and change in family dynamic (da Costa Vargens & Berterö, 2007; Fisher & O’Conner, 2012; Flórez et al., 2009).

Limitations This study provided an opportunity to gain a greater understanding of some of the characteristics and qualities that unfolded in the women’s stories of living with late-stage breast cancer. However, important limitations were as follows: The participants in this study represented a small purposive sample of self-identified second-generation, middle-class, married, Dominican American women who had strong social support networks and were recruited from an urban regional comprehensive outpatient cancer outreach program. This sample represented a subset of the Hispanic population in this community, specifically the second-generation Dominican American women. Therefore, results from this study cannot be generalized.

Implication for Nursing Practice Nurses and other health care team members caring for selfidentified second-generation Dominicans women should make every effort to include the family, especially their children in planning care. All the participants in this study expressed that their driving force and impetus to actively participate in their health care and maximize their well-being were their children. Their sole purpose was to leave a legacy of love. They expressed that their children were their reason for living. They believed that the children

Conclusion Studies that view Hispanics as one group have been critiqued for their lack of differentiation among the subgroups. 93

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Although literature on culture emphasizes differences among cultures (Callister, 2005; Kleiman, Frederickson, & Lundy, 2004), newer literature emphasizes differences within cultures. For example, just as the cultural beliefs and behaviors differ among Koreans and the Japanese as Asians, so also are there differences among Mexicans, Puerto Ricans, and Dominicans (Goldman, Diaz, & Kim, 2009; Goldman & Risica, 2004; Johnson, Mues, Mayne, & Kiblawi, 2008; O’Malley, Kerner, Johnson, & Mandelblatt, 1999; Salant & Lauderdale, 2003). This study has selected self-identified second-generation Dominican American women as a subculture. The findings suggest that in fact, these women reported experiences different from the population of Hispanics. Although one characteristic identified among Hispanics is the familia, the extent of this belief was the primary and nearly sole focus among these women. The aspect of familia, their children, guided their daily lives. How might this differ among other Hispanic subgroups? More research is needed to further distinguish among the Hispanic subcultures. The results of this study provide a unique insight regarding the lived experience of self-identified second-generation Dominican American women living with late-stage breast cancer. Viewing the experience through the lens of this Hispanic ethnic group provides a better understanding of their way of living with this illness. The four essences that unfolded facilitated the overall meaning of the experience of these women, which was described as one of uncertainty, enjoying life through the meaningful participation in the lives of others and accepting support, and believing in a higher power to create everlasting memories for their children and leave a legacy of love. Understanding their experience can help the health care interdisciplinary health care team collaborate to develop educational programs that are culturally tailored to increase awareness of breast cancer, promote self-breast examination, and emphasize the importance of regular mammograms. Finally, to promote well-being in this population, a multidisciplinary approach should be used to customize and coordinate plan of care with the quality of time spend with mothers, children, and significant others. This can be accomplished by addressing the women’s needs rooted in the construct of familismo and motherhood and will promote well-being. Future studies should be conducted to examine the role of familismo and motherhood with other Hispanic women of diverse ethnic groups diagnosed with late-stage breast cancer to determine the extent of their needs and to create services to meet them.

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