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Patient care: A case study of young working women with breast cancer

Dissertation
Author: Joni E. Dowling
Abstract:
  This single-case study explored the lived experiences of 17 young working women with breast cancer and their perceptions of care received from their cancer treatment centers. The study used first-person accounts, as well as features and characteristics of phenomenology, to collect and analyze the data. Data was gathered through in-depth, semi-structured interviews with 17 young breast cancer patients living in the United States provided the study foundation. This study defined breast cancer patients as employed women under the age of 40 at the time of diagnosis. A pilot study confirmed the effectiveness of the interview protocol for collecting data. The interview protocol consisted of 31 questions and demographic information designed to explore the physical, emotional, social, and socioeconomic effects of breast cancer treatment. The majority of women interviewed had chemotherapy and lymph node removal, causing experiences with changes in cognitive skills, intimacy issues, lymphedema, and early menopause. Some women evidenced emotional scars from their experiences and the majority feared recurrence. Regarding the cancer treatment centers, the studied women wanted better communication, more integration of care through teaming, more information on preventing side effects of treatment, more research on side effects of cancer drugs, especially as related to fertility, more secondary services to assist patients during and after treatment, and more inquiry into their cancer patient care experience. None of their physicians mentioned the importance of the mind and body connection for positive health.

vi T able of Contents Acknowledgements iv List of Tables ix List of Figures x CHAPTER 1. INTRODUCTION Introduction to the Problem 1 Problem Statement 2 Purpose of the Study 4 Research Questions 4 Definition of Terms 5 Nature of the Study 9 Assumptions and Limitations 10 Remainder of the Study 12 CHAPTER 2. LITERATURE REVIEW Introduction 13 Patient-Related Factors 14 Provider-Related Factors 31 Chapter Summary 39 CHAPTER 3. METHODOLOGY Restatement of the Problem 42 Research Design 43 Single-Case Study 44 Phenomenological Component 46

vii S ampling Design 49 Data Collection Instrumentation and Methods 52 Data Analysis 55 Pilot Study 57 Validity and Reliability within Qualitative Framework 58 Methodological Limitations 58 Ethical Considerations 58 Chapter Summary 61 CHAPTER 4. DATA COLLECTION AND ANALYSIS Introduction 62 Research Questions 62 Research Process 63 Young Working Women with Breast Cancer Profiles 66 Interviews of Young Working Women with Breast Cancer 73 Organization, Coding, and Analysis of Data 113 Mapping, Concepts, Themes, Patterns, and Commonalities 126 Findings Related to Proposed Research 129 Chapter Summary 136 CHAPTER 5. CONCLUSIONS, RECOMMENDATIONS, AND AREAS FOR FUTURE RESEARCH

Introduction 138 Summary of the Case Study 138 Conclusions from Comparative Analysis of Factors 142

viii P otential Implications of the Case Study 154 Recommendations for Cancer Treatment Centers 155 Limitations of the Research 161 Recommendation for Future Research 161 Summary 162 EPILOGUE 163 REFERENCES 166 APPENDIX A. INTERVIEW PROTOCOL 178 APPENDIX B. TYPOLOGY OF CONCEPTS AND THEMES 180

ix L ist of Tables Table 1. Overall Patient Themes as Referenced by Participants 128 Table 2. Overall Patient Care Themes as Referenced by Participants 129 Table 3. Comparative Analysis of Factors Influencing Patient-Care Experiences 151

x L ist of Figures Figure 1. Conceptual Framework 10

1

C HAPTER 1. INTRODUCTION

Introduction to the Problem Breast cancer is not rare and it is no longer an older woman’s disease. According to the American Cancer Society (2008), breast cancer is the second most common cancer, is the second leading cause of cancer death among American women, and is the leading cause of cancer death among American women ages 15-54. For American women, the lifetime risk of a diagnosis of breast cancer is 1 in 7. Among the women diagnosed each year, more than 11,100 are under the age of 40. In fact, a 30-year-old woman has a 1 in 234 chance of developing breast cancer within the next 10 years. Her probability increases to 1 in 69 at age 40 (United States Preventive Services Task Force [USPSTF], 2009). As alarming as these statistics are, nothing can be more frightening than a diagnosis of cancer. For me, that moment happened in December of 2001 and then again in November of 2003. At age 36, a diagnosis of an aggressive form of breast cancer was difficult to fathom and accept, especially when there was no family history of the disease. Following the initial diagnoses were 9 surgeries, 24 weeks of chemo-immunotherapy, 7 weeks of daily radiation, 5 days of in-patient hospital care, endocrine hormonal therapy, and multiple diagnostic tests to determine the staging of the cancer. Periodic visits continue today with the set of specialists who provided care following the original diagnosis.

2 B eyond these treatments, having breast cancer holds other challenges. Some of these challenges included finding relevant information to make informed decisions about treatment options for young women with breast cancer, finding other young women who had gone through or were going through similar experiences, juggling the demands of working full-time with getting well, and dealing with the long-term side effects of treatment, such as hypothyroidism, memory issues, early onset of menopause, and the physical disfigurement of scarring from a bilateral mastectomy with reconstructive surgery. This experience raised questions as to whether other young working women with breast cancer faced similar challenges and emotional hurdles and whether these women received the same treatment as their older counterparts. The experience also raised questions as to whether the regimen of treatments, services, and information provided today match the needs of young working women with breast cancer. This study sought to answer these questions.

Problem Statement Cancer treatment centers may not be evolving (Borkowski & Gordon, 2005; Hamel, 1998; Morrison, 1999) to address the severity of this life-changing event on its young working breast cancer patients. Women diagnosed with the disease rarely continue with their lives as they did before cancer (Figley, 1986; Taylor, 1983). Multiple factors dictate treatment options and treatments often come with secondary effects (ASCO, 2008; Bower, et al., 2000; Bowlby, 1979; Carver, 1998; Figley, 1986; Groenvold et al., 2007; Gustavsson , Julkunen, Keskivaaral, & Hietanen, 2007; Hensley et al., 2005; Van Kaam,

3 1966; Lararus, 1969; Lewin, 1935; Moos, 1976, 1984; Moos & Schaefer, 1984; National Cancer Institute [NCI], 2010; Schaefer & Moos, 1998; Taylor, 1983; Taylor & Brown, 1988). All of the secondary effects may affect the quality of life for these women (Moos & Schaeffer, 1984; Peuckmann et al., 2007; Thornton, Madlensky, Flatt, Kaplan, & Pierce, 2005). The severity of this life-changing event alters the way women perceive themselves and the world around them (Antonovsky, 1987). Family plays a pivotal role as the social support system (Figley, 1986) for these women. In addition, younger working women with breast cancer may experience a greater economic burden (Gordon, Scuffham, Hayes, & Newman, 2007; Hoffman, 1990), their cancer may be biopathologically different and characterized by unfavorable prognosis, (Sidoni, Cavaliere, Bellezza, Scheibel, & Bucciarelli, 2003), and they may be at a different human developmental stage (Belenky, Clinchy, Goldberger, & Tarule, 1997; Gilligan, 1993) from that of their older counterparts. As such, young working women with breast cancer may require a broader selection of service options (Martin, 2008). Recent studies related to the hospital industry have focused on the general aspects of improving patient care (Cleverly & Cleverly, 2005; Gumbus, Bellhouse, & Lyons, 2003; Inamdar & Kaplan, 2002; Kershaw & Kershaw, 2001; Pieper, 2005; Voelker, Rakich & French, 2001; Zelman, Pink, & Matthias, 2003). While some of the research focused on evolving cancer care through strategic performance management, few studies focused on an introspection of young working women with breast cancer and their lived experiences. Descriptions provided by young working women with breast cancer have the opportunity to provide a deeper understanding of both the routine and problematic

4 m oments these women experienced with their cancer treatment centers. This gap in knowledge creates a challenge for this group of individuals (YSC, 2008).

Purpose of the Study The purpose of this case study was to explore the lived experiences of young working women with breast cancer and their perceptions of care received from their cancer treatment centers. The exploration of such experiences allowed examination of how cancer treatment centers cared for and served the needs of these young women with breast cancer. By exploring the types and quality of breast cancer patient care received, along with identifying any unmet needs, the study provided interested parties with additional insight into the ways these women need to be cared for, so that women, regardless of age, might receive breast cancer patient care that treats the whole person, not just the cancer.

Research Questions In an effort to understand the patient-care challenges that young working women with breast cancer experience, consideration into which of the six social science paradigms suited for creating new knowledge or expanding existing knowledge (Arbnor & Bjerke, 1997) was given. Each social science paradigmatic category describes a perspective in terms of how researchers view a situation, event, problem, or experience. The realities of the researcher’s viewpoint dictate the presumptions and questions that become the basis for creating or expanding the body of knowledge. This type of analysis assisted in constructing the research design and purpose of the intended research. For the

5 pur pose of this study, reality represented a world of symbolic discourse. Social reality emerges from subjective interpretations of the actions and interactions of others, and through this process, reality evolves and changes. Cooper and Schindler (2006) considered the development of the research questions as a progressive hierarchical breakdown of the basic dilemma or problem. The dilemma for the case study was how to improve quality and personalized patient care for young working women with breast cancer. Based on this premise, the following research questions provided the foundation for an interview protocol used to conduct in-depth, semi-structured interviews with the participants under study. 1. What challenges and emotional hurdles do young working women with breast cancer face?

2. What characteristics of young working women with breast cancer are different from those of their older counterparts?

3. What aspects of young working women with breast cancer are different from those of other young working women who do not have breast cancer?

4. What regimen of treatments, services, and information provided today are well suited to the needs of young working women with breast cancer?

Definition of Terms

Adjunct therapy. A form of treatment, also referred to as adjunctive therapy, used in conjunction with the primary treatment, such as chemotherapy, radiation therapy, endocrine therapy, or biological therapy (National Cancer Institute [NCI], 2008). Axillary dissection. A surgical procedure, also referred to as axillary lymph node dissection, which removes lymph nodes found in the armpit region (NCI, 2008).

6 A xillary lymph node. A lymph node in the armpit region that drains lymph channels from the breast (NCI, 2008). Bilateral cancer. A form of cancer that occurs in both paired organs, such as found in both breasts or in both ovaries (NCI, 2008). Bilateral prophylactic mastectomy. A surgical procedure to remove both breasts in order to reduce the risk of developing breast cancer (NCI, 2008). Biopsy. A procedure to remove cells or tissues for examination by a pathologist (NCI, 2008). BRCA1. A gene on chromosome 17 that works to suppress cell growth. Individuals who inherit a mutated BRCA1 gene have a higher risk of getting breast, ovarian, or prostate cancer (NCI, 2008). BRCA2. A gene on chromosome 13 that works to suppress cell growth. Individuals who inherit a mutated BRCA2 gene have a higher risk of getting breast, ovarian, or prostate cancer (NCI, 2008). Breast-conserving surgery. A procedure, also referred to as breast-sparing surgery, to remove the breast cancer but not the breast itself, such as lumpectomy, quadrantectomy, and segmental mastectomy (NCI, 2008). Cancer centers. Hospitals recognized by the National Cancer Institute (NCI) for a scientific agenda (NCI, 2008). Chemoimmunotherapy. A form of treatment that combines chemotherapy with immunotherapy. Immunotherapy helps to restore the patient’s immune system while the chemotherapy kills or slows down the growth of cancer cells (NCI, 2008).

7 Comprehensive cancer treatment centers. H ospitals recognized by the NCI for their ability to provide patient service, conduct research with substantial transdisciplinary research that bridges these scientific areas, and engage in outreach and educational activities (NCI, 2008). C ancer treatment centers. Organizations with a mission that involves patient care for individuals diagnosed with cancer, such as general hospitals, learning hospitals, or cancer centers, whether or not recognized by the NCI (NCI, 2008). In situ breast cancer. Refers to cancer in which the cells have remained within the place of origin. The most common type of noninvasive breast cancer is ductal carcinoma in situ (DCIS), which is confined to the lining of the milk ducts (NCI, 2008). Invasive breast cancer. B reast cancer that infiltrated and spread outside the membrane that lines a duct or lobule, invading the surrounding tissues and spreading to other parts of the body, such as the lymph nodes (NCI, 2008). Invasive ductal carcinoma (IDC). T his type of breast cancer accounts for about 70% of all breast cancers. The cancer cells form in the lining of the milk duct, then break through the ductal wall and invade nearby breast tissue. IDC can remain localized or can metastasize throughout the body, carried by the bloodstream or lymphatic system (NCI, 2008). Invasive lobular carcinoma (ILC). L ess common than IDC, this type of breast cancer invades in a similar way, starting in the milk-producing lobules and then breaking into the surrounding breast tissue. ILC can also spread to distant parts of the body (NCI, 2008).

8 Local treatments. T reatments confined to the breast and axillary (underarm) areas (NCI, 2008). St age I breast cancer. Means that the tumor is no more than 2 cm in diameter and it has not spread to the lymph nodes or breast. The 5-year overall survival rate is close to 100% (NCI, 2008). Stage II breast cancer. Means that the tumor is more than 5 cm in diameter and has not spread to the axillary lymph nodes, or the tumor is less than 2 cm in diameter and has spread to no more than three of the axillary lymph nodes. The 5-year overall survival rate is 86% to 91% (NCI, 2008). Stage III breast cancer. Known as locally or regionally advanced cancer that has spread to lymph nodes near the breast, but not to more distant parts of the body. The tumor is larger than 5 cm with cancer cells that have spread to the axillary lymph nodes (NCI, 2008). Stage IV breast cancer. The most advanced form of breast cancer. Cancer cells have spread to distant parts of the body. Treatment may control the cancer for a while, but at this stage, symptom relief becomes a priority. The 5-year overall survival rate is 20% (NCI, 2008). Systemic. Treatments that treat the whole body (NCI, 2008). Young working women with breast cancer. Employed women diagnosed with breast cancer before age 40. These working women are or were patients of cancer treatment centers. Women in this age category usually have follow-on care years after their initial diagnosis because of risk for recurrence and development of other cancers later in life (Hensley, et al., 2005; Sidoni et al., 2003).

9 N ature of the Study The focus of this case study was to describe the lived experiences of young working women with breast cancer and their perceptions of care received from their cancer treatment centers. The implications from the findings may result in identifying supportive or non-supportive aspects of patient care in meeting each woman’s needs. Gathering information germane to this case study centered on understanding participants’ experiences in dealing with breast cancer, identifying any challenges encountered, and determining what type of services the cancer treatment center offered. By exploring the lived experience of these young working women with breast cancer and their patient care needs, the potential implications of the case study may result in recommendations that hospital administrators and physicians deem useful in treating and delivering services to cancer patients. The outcome of the case study was dependent on perceptions and experiences of individuals. The single case study approach included interviews of 17 participants: employed women who received a diagnosis of breast cancer before age 40. Figure 1 links the problem statement and purpose of the case study of young working women with breast cancer and the effectiveness of current cancer treatment centers.

10 ©Dowling 2010 Lived experiences of young working women with breast cancer Lived experiences of young working women with breast cancer and the effectiveness of current cancer treatment cen ters and the effectiveness of current cancer treatment cen ters Patient-related factors that may not be part of current patient care Conceptual Diagram C onceptual Diagram Provider-related factors that may influence effectiveness • D evelopmental stages (Belenky, et al., 1997; Gilligan, 1993) • Effects of treatment • Physical challenges (ASCO, 2008; Bower, et al., 2000; Groenvold et al., 2007; Knobf, 2002; NCI, 2010) • Emotional challenges (Bowlby, 1979; Carver, 1998; Dunkel-Schetter et al., 1992; Lazarus, 1969; Lewin, 1935; Moos, 1976; Moos, 1984; Schaefer & Moos, 1998; Taylor, 1983; Taylor & Brown, 1983) • Social and socioeconomic challenges (Antonovsky, 1987; Figley, 1986; Gordon, et al., 2007; Gustavsson, et al., 2007; Hensley, et al.,2005; Hoffman, 1990; Kaam, 1966; Stewart, et al., 2001) • Body and mind connection (Cousins, 1979; 1989; Dispenza, 2007; Fiore, 1990; Lechner, et al., 2006; Milne et al., 2007; Moorey, et al.,1994) • Isomorphism within the healthcare industry (Borkowski & Gordon, 2005; DiMaggio & Powell, 1983) •Strategic management aligned to customer perspectives (Gumbus, et al., 2003; Inamdar & Kaplan, 2002; Kaplan & Norton, 2001; Kershaw & Kershaw, 2001; Swinehart,et al., 1995; Walker & Dunn, 2006; Zelman, et al., 2003) • Organizational ecology (Argyris, 1990; Gharajedaghi, 2006; Gharajedaghi & Ackoff, 1984; Kuhn, 1996; Martin, 2008; Piaget, 1971; Quinn, 1996; Scott, 2003; Senge, 1990; Senge, et al., 1999; Senge, et al., 2005; Weick, 1979) Cancer treatment centers m ay not be evolving (Borkowski & Gordon, 2005; Hamel, 1998; Morrison, 1999) to address the severity of this life-changing event has on its young, working breast cancer patients.

Fi gure 1. Conceptual framework

A ssumptions and Limitations The framework of this case study made certain assumptions and ideas that expanded or created knowledge within an area of study (Van Manen, 1990) based on

11 hum an beings and their experiences with the world around them. The intent of this case was to acquire a deeper, richer understanding of each young working woman’s experience with her cancer treatment center. It was through the exploration that the researcher discovered how the cancer treatment centers cared for and served the needs of women with breast cancer. The case study contained several assumptions and two limitations. One assumption was that experiences of one young working woman with breast cancer might be similar to the experiences of other young working women with breast cancer. A second assumption was that working women under 40 might have unique needs that require different types of services and care, compared to their older counterparts. Another assumption was that tailoring breast cancer patient care to address the unique needs of the younger working women might improve the patients’ overall well-being. The case study recognized that men could be stricken with breast cancer, as well. However, the design of the study addressed only the exploration of a group of young working women with breast cancer during a specific time period to perpetuate a deeper, richer understanding of each woman’s experiences with her cancer treatment center. Another limitation of this case study was using a small sample of participants as part of the case study design. Defined by its purpose, case study research uses thick, holistic, and lifelike descriptions of an event, an individual, an institution, or anything else from its real-life context when the contextual boundaries are not clearly defined. Using a small sample of participants may oversimplify or exaggerate the event (Creswell, 1998; Guba & Lincoln, 1981; Stake, 1995; Yin, 2003). Based on the conclusions of the study, further research may be necessary to discover whether the phenomena are prevalent with young

12 w orking women with breast cancer or with most women treated for breast cancer, regardless of age.

Remainder of the Study The remainder of the case study consists of four chapters. Chapter 2 reviews the related literature. The first area frames this study. The second area provides background to a practical problem faced by organizations. Chapter 3 focuses on the qualitative research design and discusses methods utilized for data collection and analysis. Chapter 4 describes the process for gathering the information, presents the themes, patterns, and commonalities that emerge, and answers the four main research questions. Chapter 5 links these findings to the researched literature in chapter 2, thus drawing conclusions. Chapter 5 provides recommendations for cancer treatment centers, discusses the limits of this case study, explains its implications for practice, and lists recommendations for future research.

13

C HAPTER 2. LITERATURE REVIEW

Introduction This chapter contains examination of existing and relevant research related to the elements of this research topic. In doing so, the literature review provides the reader with the rationale for the study and contextualizes its purpose. The purpose of this case study was to explore the lived experiences of young working women with breast cancer and their perceptions of care received from their cancer treatment centers. Descriptions by young working women with breast cancer presented the opportunity of a deeper understanding into the routine and problematic moments these women experienced with their cancer treatment centers. The existing and relevant researched literature had two distinct areas. The first area of research focused on factors that may have influenced young working women’s experiences in dealing with breast cancer and its treatment. The second area of study focused on provider-related conditions that may have influenced the organizational and treatment environment. The case study did not explore cancer treatment centers. This area of researched literature only provided background to a practical problem faced by organizations. The primary focus of the case study was to explore perceptions of young working women who had first-hand experiences dealing with treatments for breast cancer. Provider-related factors identified from interviewing these women may yield knowledge about these lived experiences that can translate into business practices or

14 f urther research. Each area of focus had support from theories framing the study. As an exploratory study, the inquiry identified several variables that appeared to influence how cancer treatment centers care for and serve the needs of women with breast cancer.

Patient-Related Factors During the 1930s, approximately 1 in 5 cancer patients lived beyond 5 years after a diagnosis of cancer (Ganz, 1990). Today, advances in cancer treatment technologies have improved a cancer patient’s survivability. Over 80% of women diagnosed with breast cancer will be survivors (Hensley et al., 2005). Despite this improvement in cancer patent survivability, Sidoni et al. (2003) concluded that breast cancer patients under the age of 40 may have biopathologically different cancers from those of their older counterparts and might predominantly have an unfavorable prognosis. Albeit that early detection increases a younger woman’s survivability, early detection more than likely requires continued observation and follow-up care that ranges from 9 to 16 years in duration (Hensley et al.). This in turn creates a greater demand for breast cancer patient services. Accompanying the greater demand for cancer patient services is the need for women’s voices and experiences to be heard, particularly from young working women with breast cancer (Young Survival Coalition [YSC], 2008). Developmental Stages According to Gilligan (1993), the lack of the feminine voice within the psychological and educational literature causes a significant problem in the development of women. The existing male models of human growth dominate the societal landscape, where social status, power, and differences in reproductive biology shape and create an

Full document contains 194 pages
Abstract:   This single-case study explored the lived experiences of 17 young working women with breast cancer and their perceptions of care received from their cancer treatment centers. The study used first-person accounts, as well as features and characteristics of phenomenology, to collect and analyze the data. Data was gathered through in-depth, semi-structured interviews with 17 young breast cancer patients living in the United States provided the study foundation. This study defined breast cancer patients as employed women under the age of 40 at the time of diagnosis. A pilot study confirmed the effectiveness of the interview protocol for collecting data. The interview protocol consisted of 31 questions and demographic information designed to explore the physical, emotional, social, and socioeconomic effects of breast cancer treatment. The majority of women interviewed had chemotherapy and lymph node removal, causing experiences with changes in cognitive skills, intimacy issues, lymphedema, and early menopause. Some women evidenced emotional scars from their experiences and the majority feared recurrence. Regarding the cancer treatment centers, the studied women wanted better communication, more integration of care through teaming, more information on preventing side effects of treatment, more research on side effects of cancer drugs, especially as related to fertility, more secondary services to assist patients during and after treatment, and more inquiry into their cancer patient care experience. None of their physicians mentioned the importance of the mind and body connection for positive health.