Abstract
Among Latina women in the United States, breast cancer is the most common cancer type, with an estimated 19,800 new cases of breast cancer occurring annually (American Cancer Society, 2015). Latinas experience poorer quality of life (QOL) as survivors after a breast cancer diagnosis (Yanez, Thompson, & Stanton, 2011), and they receive lower quality health care overall than do non-Latino Whites (Institute of Medicine, 2002). In addition, socioeconomic status (SES) and gender disparities contribute to the Latina population being underserved in health care in general (Ricker et al., 2007). Nearly 25% of Latinos in the United States live below the Federal Poverty Level (FPL; DeNavas-Walt & Proctor, 2015), and low SES has been shown to significantly decrease QOL for breast cancer survivors (Janz et al., 2005). Therefore, low-income Latina breast cancer survivors are disproportionately at risk for poor health outcomes.
Despite the critical need for more research into the needs and experiences of low-income Latina breast cancer survivors (Yanez, McGinty, Buitrago, Ramirez, & Penedo, 2016), few oncology studies have explored the everyday lives of breast cancer survivors from diverse backgrounds (Lopez-Class, Gomez-Duarte, Graves, & Ashing-Giwa, 2012). In occupational therapy, the majority of oncology research involves White participants and explores the efficacy of interventions for symptoms such as lymphedema (e.g., McClure, McClure, Day, & Brufsky, 2010) or fatigue (e.g., Purcell, Fleming, Bennett, & Haines, 2010). Occupational therapy research in oncology often focuses on the importance of occupation for older adults with cancer (e.g., Lyons, Lambert, Balan, Hegel, & Bartels, 2013; Pergolotti, Cutchin, Weinberger, & Meyer, 2014) or for people with terminal diagnoses (e.g., Lyons, Orozovic, Davis, & Newman, 2002). Finally, many oncology outcome studies focus on physical or psychological deficits while neglecting changes in function, participation, and QOL (Hwang, Lokietz, Lozano, & Parke, 2015). The purpose of this study was to fill a gap in the literature by exploring the interplay among occupational engagement, socioeconomic status, culture, and QOL in low-income Latina breast cancer survivors.
Method
Design
This qualitative, descriptive study was designed to answer the following research question: How do low-income Latina breast cancer survivors experience QOL and occupational engagement? The methods used were guided by the style of naturalistic inquiry outlined by Lincoln and Guba (1985). Accordingly, the aim was not to establish a generalizable, nomothetic body of knowledge about this population but rather to present each participant’s personal lived experience as unique while uncovering common themes within and across participants. Ethics approval for this study was obtained from the appropriate university and site-specific institutional review boards.
Participants
Purposive sampling was used to recruit participants who met the following inclusion criteria: age ≥18 yr; self-identification as Latina; annual income below the U.S. Census Bureau’s (2016) low-income threshold; participation in ongoing care at Los Angeles County + USC Medical Center (LAC+USC); diagnosis of breast cancer; completion of primary surgical treatment, chemotherapy, and radiation; and ability to speak English or Spanish. Women with metastatic cancer and those still undergoing treatment were excluded because survivors in the acute and end-of-life phases of cancer report vastly different needs and experiences than those in the maintenance phase (Feuerstein, 2007). Thus, in keeping with the scope of this study, it was deemed necessary to concentrate on the needs of survivors who had completed treatment and entered the follow-up phase.
Data Collection
Participants were recruited from the oncology clinic at LAC+USC, a major public hospital, with assistance from a bilingual (English and Spanish) Latina research assistant. Potential participants provided informed consent before enrollment, and demographic data were collected from each using a standard questionnaire. One in-person, audio-recorded, semistructured interview was conducted with each participant in either Spanish or English according to participant preference. English-language interviews were conducted by the author, and Spanish-language interviews were conducted collaboratively by the author and the research assistant. Each interview took place either in the participant’s home or in a private office according to participant preference and lasted approximately 1 hr. Participants were compensated $20 for their time. The following interview questions were used as a guide:
What does a typical day look like for you? How has your routine changed since your cancer diagnosis and treatment?
What aspects of your everyday life are challenging for you?
What strategies do you use on a daily basis to stay happy and healthy?
What kind of extra help or support do you feel would be most beneficial to you?
Data Analysis
Interviews were translated from Spanish to English as necessary and transcribed. In keeping with Lincoln and Guba’s (1985) criteria for establishing trustworthiness in qualitative research, triangulation via co-coding of emerging themes was done in collaboration by the author and research assistant. They extracted a list of core themes from the data and reached consensus through discussion. A third researcher with expertise in qualitative data analysis conducted an external audit of the data analysis by reviewing working themes and providing feedback during the analysis process (Lincoln & Guba, 1985). Data collection and analysis occurred simultaneously to allow for negative case analysis (Lincoln & Guba, 1985) and the incorporation of emerging and evolving themes into ongoing interview questions. Recruitment and coding continued until data saturation was achieved.
Results
Nine breast cancer survivors participated in the study (see Table 1 for characteristics). Seven participants were monolingual in Spanish, and 2 were bilingual in Spanish and English. The average age of participants was 53. Six participants reported an annual household income below the FPL and 3 qualified as low-income on the basis of U.S. Census Bureau (2016) criteria.
Participant Characteristics
Analysis revealed four themes and five subthemes that describe the relationships among cancer, QOL, and occupational engagement in study participants and potential roles for occupational therapy practitioners working with low-income Latina breast cancer survivors. To protect the identities of participants, the source of each quotation is indicated by a participant number (e.g., Participant 1).
Occupations That Were Negatively Affected by Cancer
All the participants indicated that their daily routines had changed and their activities had been restricted since being diagnosed with breast cancer. The primary occupations that participants reported as being limited by the diagnosis and treatment were (1) activities of daily living (ADLs) and instrumental activities of daily living (IADLs) and (2) work and leisure activities.
ADLs and IADLs.
Six participants reported that their ADLs and IADLs had been negatively affected by cancer treatment and side effects. Upper-extremity mobility limitations from pain and weakness secondary to surgery or lymphedema had affected ADLs such as bathing and dressing as well as IADLs such as shopping, sleeping, and cooking. Participant 4 explained, “At the place where they did my cancer surgery, my arm is, like, defenseless; this arm of mine is, like, dead. I can’t lift it.” Participant 9 could not sleep because of upper-extremity pain: “I have a lot of pain in one arm and shoulder. It doesn’t let me sleep.” Participant 8 reported an issue with bathing: “When I bathe is when I have the problem, because I feel that my arm isn’t strong when I scrub myself, or I can’t cross it very much.”
For some participants, functional mobility also was affected. Participant 1 stated, “It’s been a year and a half since they operated on me, and . . . I can’t walk steadily because my bones still really hurt.” Participant 7’s functional mobility had declined so much since her cancer treatment that she routinely fell: “Just like today, I went to go pick up my dad’s newspaper. I just lost my balance and I fell. It happens maybe once a month.” Sexuality was also affected for some participants. Participant 9 explained, “When I finished my entire treatment, they started giving me the medication tamoxifen. Since then I don’t have any interest in having sexual relations—nothing.”
Work and Leisure Activities.
Five participants reported that their ability to partake in work and leisure activities had been negatively affected. For example, Participant 1 had loved swimming before she was diagnosed with cancer, but now, she reported, “If I swim across the pool, I have trouble getting to the other side because the arm where they did the surgery, I can’t move it, so I can’t do it.” Participant 9 reported that her energy levels simply were too low to accommodate much leisure activity: “Before, I liked going out a lot. . . . Lately I lack energy. I have no energy, none. I just want to sleep and be by myself, watch television.”
In addition to reporting decreased leisure activity, several participants stated that they could no longer work after their cancer diagnosis. Some made the decision to stop working because of side effects such as pain and weakness. Others were dismissed from their jobs once they could no longer perform their duties. Participant 8 had worked as a nanny, but she was fired after she had to miss work several times to travel to the hospital for chemotherapy and radiation. Two other participants were fired before they even began treatment simply because their supervisors feared that their cancer diagnosis would interfere with their job performance. As Participant 1 explained,
Since I got diagnosed with cancer, my manager fired me. Before any treatment, before any surgery, he fired me, and I haven’t been able to return. I was a seamstress of pillows, curtains, umbrellas, all that. Now, I can’t do it.
Many participants reported that their decreased participation in valued everyday activities resulted in depression. As Participant 7 said, “I hurt, and I’m in pain, but you know what? Mental pain is worse than the physical. . . . I—there’s nothing to look forward to.” Participant 2 described needing to go to the park or to Catholic Mass daily because otherwise, “I get very depressed.” Participant 9 explained, “Sometimes I don’t feel like showering. . . . I feel like I don’t want to get up. Sometimes I say, why do I want to keep going? I think that’s my depression, because sometimes I think I’m bored of living.”
Occupations That Helped Improve Quality of Life
Although many participants reported that their daily activities were negatively affected by cancer, many also indicated that occupational engagement during and after cancer treatment helped improve their QOL. Participants commonly perceived three specific occupations as positively influencing well-being during survivorship: (1) religious and spiritual activity, (2) service to others, and (3) regular routine.
Religious and Spiritual Activity.
Six participants indicated that religious and spiritual activities helped assuage the side effects of cancer. Participant 1 reported, “My strategy is going to church. Reading the word of God, listening to hymns of praise at home . . . I try to fill my life with everything that is related to God.” Participant 2 explained, “[Prayer] has relieved my sadness a lot, my issues, my illness.” Participant 8 reported that she did not begin her day until she took time to pray: “Every morning, I’m never without my Bible and my prayers. . . . The telephone, the TV—I don’t touch them until I say my prayers, and then I feel good.”
Service to Others.
Six participants reported that being of service to others helped them cope with cancer and its treatment. For Participant 1, service was tied to her religious background as an evangelical Christian. Through her church, she visited the sick and elderly on a weekly basis. She said, “If it’s possible, I go to visit a sick person, and when I visit him, even though I’m going through my recovery, it makes me feel happy, it makes me feel good.” Similarly, 2 other participants reported finding fulfillment and joy in counseling other cancer survivors and acting as a mentor to newly diagnosed people.
In addition, 6 participants indicated that they found relief from cancer through acting as a caregiver for family members. Participant 7 was a full-time caregiver for her father, who had Alzheimer’s and diabetes. As she noted, “I think getting up in the morning, making my dad’s coffee, his toast, checking his blood, doing something for him makes me feel better. . . . It’s not much, but it’s something.” Several others indicated that the responsibility to care for family members gave them strength. Participant 4 said of her daughter (who had an intellectual disability), “When I see her, I say, that’s my motivation.” Participant 8 spoke similarly of the boy for whom she cared as a nanny: “He lifted my spirits. . . . [He] gave me the strength to keep going.” Finally, Participant 3, who was pregnant at the time of her cancer diagnosis, reported that her love for her unborn son motivated her: “I think what saved me was that motherly instinct. . . . I can’t panic that I have cancer. I have to worry first about this child I’m carrying and responsible for.”
Regular Routine.
Seven participants reported partaking in a regular routine during the day despite nausea, weakness, and fatigue to “keep busy” or “stay normal.” This activity warded off boredom and depression. As Participant 5 explained,
What I like the most is going to the market, shopping, washing, cleaning . . . because I don’t want to be bored at home, because when I do nothing, I feel that I start thinking about many things, or I feel more stress. I feel stressed out when I’m not doing anything.
Sometimes maintaining a regular routine also entailed self-care. Participant 3 said, “I made sure I showered all the time. I made sure I put makeup on. I wore earrings. I picked my outfits. I wanted to feel important enough that I deserved to have a day like everybody else.” Participant 6 agreed: “[My sister] always told me, ‘Fix yourself up, make yourself pretty, even when you go to your treatment. . . . Dress up, make yourself presentable, because you’ll feel better about yourself.’ And that also helped me.”
Impact of Low Socioeconomic Status on Occupational Engagement
The participants’ low SES colored their experience of occupational engagement during cancer survivorship. Most notably, concerns about money infiltrated many aspects of everyday life. For 4 participants, financial worries affected their ability to participate in occupations that would ordinarily be therapeutic. For example, Participant 1 described being unable to visit sick friends because of financial constraints: “If I don’t have any money, I can’t even go out to visit people because I have to be watching that I don’t run out of gasoline.” Participant 7 wanted to attend a breast cancer support group but was unable: “I have to watch over my father. And it’s hard unless I know ahead of time that someone would take my father with them for a day.”
Often, financial concerns increased participants’ emotional distress. Participant 4 said, “I feel bad sometimes because I want to have my own money and help my dad, help with anything, buy my daughter something that she likes . . . and that’s the main reason I feel sad.” Participant 1 explained that her main concern while going through cancer treatment was not whether she would survive, but rather how her family would pay for her funeral if she died: “I was concerned, because what were they going to do if I died? Because they didn’t have any money to bury me, I had not paid for a burial place—the expenses this would entail.” Financial concerns cast a shadow over nearly every aspect of everyday life for the participants in this study.
Potential Roles for Occupational Therapy
Participants were asked what type of health care services might benefit them during cancer survivorship (Question 4 in the interview guide). Many of their answers reflected roles that occupational therapy practitioners would be qualified to fill. For example, 2 participants expressed a desire for a health care practitioner who could provide them with motivation to stay healthy during survivorship. Participant 4 said, “[I need more] motivation. Someone who tells me, ‘Hey, that’s bad for you. You know you don’t need to eat that.’” Participant 9 agreed, saying, “I want to go to Zumba, and I want to stop eating so much fat, so much bread and soda. . . . [I need] something that gives me encouragement and motivation, because I feel very apathetic, weak.”
Other participants indicated that they would have liked more information from a health care professional about what to expect after the cancer diagnosis, especially before they began treatment. As Participant 6 explained, “[We need] more information because a lot of times, even if we are given brochures, we don’t read them because we are afraid.” Participant 5 agreed, saying, “We should have more information for the people who are beginning [treatment]. . . . I’m telling you because in my experience, I was very scared that day.”
Participants also indicated that they lacked personalized health care during cancer treatment. Four participants felt like “just another file” (Participant 3) or “like you are one more patient, like you are bothering them” (Participant 9). Participant 1 stated, “[Health care providers] know the file but they don’t know the patient, and that’s the difference.” Several participants also reported that a language barrier decreased the quality of their health care encounters. As Participant 1 recalled,
When they gave me my diagnosis, an interpreter was the one who told me, but then all the consequences of my treatments and cancer, they told them to my daughter. And my daughter didn’t tell me many things. I knew she wasn’t telling me.
Two other participants agreed that when family members interpreted during appointments, they often missed key information because their loved ones hesitated to deliver difficult news.
Discussion
This study adds to the limited available literature on the relationship between occupational engagement and QOL in low-income Latina breast cancer survivors. In general, participants indicated that although they found occupational engagement to be health promoting, their functional participation in many daily activities was limited by cancer and its side effects. This finding is consistent with the literature about the general population of breast cancer survivors and may not be unique to low-income Latina breast cancer survivors. For example, research has suggested that oncology patients often experience modest to moderate degrees of functional deficits and that a significant negative correlation exists between functional deficits and QOL in cancer survivors (Hwang et al., 2015). Furthermore, the results of this study align with existing research indicating that incorporation of health-promoting activities and maintenance of a “normal” routine after breast cancer diagnosis may be associated with increased QOL during survivorship (Lehto, Ojanen, & Kellokumpu-Lehtinen, 2005; Palmadottir, 2009; Unruh & Elvin, 2004).
In addition, previous research has demonstrated that satisfaction with the ability to participate in daily activities is one important aspect of QOL (Cella & Nowinski, 2002) and that breast cancer survivors are at greater risk for participation restrictions if they are negotiating a balance among health, work, and caregiving responsibilities (Mackenzie, 2014). Participants in this study often reported juggling caregiving, maintaining steady employment, and achieving well-being. Thus, it is no surprise that these women reported significant limitations in occupational engagement and, accordingly, decreased QOL.
Although some of this study’s findings correspond with existing research about the general population of breast cancer survivors, other findings may be more unique to those who are Latina and have low incomes. For example, the participants in this study reported that their occupational engagement and QOL were negatively affected by financial concerns. Some were worried about losing employment after their cancer diagnosis, and some were unjustly fired from their jobs before treatment even began. Research has demonstrated that financial constraints challenge many Latina breast cancer survivors and can lower their QOL during survivorship (Ashing-Giwa, Padilla, Bohórquez, Tejero, & Garcia, 2006). Existing research has also suggested that Latina breast cancer survivors, especially those with lower socioeconomic status, may be particularly concerned about losing their job because of cancer side effects (Ashing-Giwa et al., 2006). Indeed, low income is associated with more negative symptoms in breast cancer survivors, and financial worries may contribute to the disproportionate appearance of depression in Latina breast cancer survivors when compared with their non-Latino White counterparts (Eversley et al., 2005).
Most participants in this study reported that religious and spiritual activity positively influenced their QOL. Religiosity and spirituality are often considered an important source of support for Latinos during health adversity (Yanez et al., 2016), and existing research has suggested a significant correlation between religiosity and spirituality and health-related QOL in Latina breast cancer survivors (Wildes, Miller, de Majors, & Ramirez, 2009). Participating in a caregiving role was also important to QOL for many study participants. This strong identification with family, a Latino cultural value sometimes referred to as familism (Yanez et al., 2016), often provides fulfillment. However, familism can also negatively influence health outcomes because Latina women may prioritize the needs of their family members over their own well-being (Ashing-Giwa et al., 2006).
Many participants reported a desire for more personalized health care, professional support in initiating health-promoting lifestyle behaviors, and improved delivery of health-related information. These findings appear to be consistent with broader research about breast cancer care, in which treatment often focuses on physiological factors while deemphasizing changes in participation and function and neglecting to fully support the transition to survivorship (Brockow et al., 2004; Hwang et al., 2015). However, although these results reflect struggles experienced by breast cancer survivors of all races and ethnicities, they also point to the importance of recognizing the specific confluence of socioeconomic, cultural, and behavioral factors that influence health outcomes in each client.
For example, previous research has suggested that communication problems with health care providers present barriers to sufficient care for Latina cancer survivors (Baezconde-Garbanati, Murphy, Moran, & Cortessis, 2013). In addition, studies have indicated that Latinas, especially those with low acculturation, may have difficulty processing information related to their breast cancer when it is provided in a medical setting (Ashing-Giwa et al., 2006). Moreover, low acculturation in Latinos has been linked to difficulty communicating in English and unfamiliarity with the U.S. health care system (Kagawa-Singer, Dadia, Yu, & Surbone, 2010). Therefore, less acculturated low-income Latina breast cancer survivors may require different health-related support than their more acculturated peers. Furthermore, findings from this study confirm that when working with less acculturated clients, the use of English-speaking family members as translators may hinder effective communication (Karliner, Jacobs, Chen, & Mutha, 2007).
Limitations
This study was a descriptive, qualitative study with a small sample of participants recruited from one geographic location. The findings presented here are therefore preliminary and cannot be generalized to women outside this study. Additional analyses in other groups of low-income Latina breast cancer survivors from a variety of settings and backgrounds are needed to broaden the applicability of these findings. In addition, demographic data were provided via patient self-report, which may not have been fully accurate in every case. Further research would benefit from use of patient medical records to confirm demographic and health-related data. Despite its limitations, this study contributes key information regarding occupational engagement and QOL after breast cancer, including how relevant issues might affect survivorship for low-income Latinas.
Implications for Occupational Therapy Practice
Occupational therapy practitioners can benefit from understanding the lived experiences of low-income Latina breast cancer survivors and developing an appreciation for the nuanced relationships among sociocultural factors, occupational engagement, and QOL. The findings of this study have the following implications for occupational therapy practice:
When evaluating clients with breast cancer, practitioners should take into account not only medical history but also SES and relevant cultural factors because these may influence clients’ occupational engagement and function.
When designing interventions, practitioners should consider the deleterious effects of breast cancer treatment not only on physical functioning but also on mental, emotional, and spiritual well-being.
Many participants reported feeling like “just another file” during treatment and indicated that translation services were inadequate. Practitioners should strive to uncover each client’s unique context, history, goals, and communication preferences to increase trust and treatment efficacy.
Conclusion
This study responds to a need for more research exploring function, coping strategies, and QOL in cancer survivors (Brearley et al., 2011), as well as a need for more oncology research focusing on Latinos in the United States (Yanez et al., 2016). It also provides insight into the unique experiences of occupational engagement in an understudied population. Ultimately, these findings suggest that although occupational engagement can improve QOL during cancer survivorship for low-income Latina breast cancer survivors, such engagement can also be threatened by cancer and its side effects, especially when complicated by financial challenges. Given that culturally tailored interventions improve health outcomes for ethnically diverse populations (Moreno & Johnston, 2014), occupational therapy practitioners with an understanding of the nuanced relationships among sociocultural factors, occupational engagement, and QOL in low-income Latina breast cancer survivors may better be able to better help their clients achieve well-being during survivorship.
Footnotes
Note. Each issue of the 2017 volume of the American Journal of Occupational Therapy features a special Centennial Topics section containing several articles related to a specific theme; for this issue, the theme is occupational therapy’s role in cancer treatment and recovery. The goal is to help occupational therapy professionals take stock of how far the profession has come and spark interest in the many exciting paths for the future. For more information, see the editorial in the January/February issue, 
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Acknowledgments
I thank Florence Clark for her guidance during the development of this article, which was written in partial fulfillment of the requirements for a doctoral degree in occupational science at the University of Southern California. I also extend sincere thanks to Gabrielle Granados, Karina Cordova, and Alison Cogan for their invaluable contributions. This work was supported by a research grant from the California Foundation for Occupational Therapy.