J Canc Educ (2015) 30:497–502 DOI 10.1007/s13187-014-0725-8
Breast Cancer Surgery Decision-Making and African-American Women Jane R. Schubart & Michelle A. Farnan & Rena B. Kass
Published online: 9 September 2014 # Springer Science+Business Media New York 2014
Abstract Prior research has used focus group methodology to investigate cultural factors impacting the breast cancer experience of women of various ethnicities including AfricanAmericans; however, this work has not specifically addressed treatment decision-making. This study identifies key issues faced by African-American women diagnosed with breast cancer regarding treatment decisions. We used an interpretivedescriptive study design based on qualitative data from three focus groups (n=14) representing a population of AfricanAmerican women in central Pennsylvania. Participants were asked to think back to when they were diagnosed with breast cancer and their visit with the breast surgeon. Questions were asked about the actual visit, treatment choices offered, sources of information, and whether the women felt prepared for the surgery and subsequent treatments. The prompts triggered memories and encouraged open discussion. The most important themes identified were fear across the breast cancer disease trajectory, a preference for visual information for understanding the diagnosis and surgical treatment, and support systems relying on family and friends, rather than the formal health-care system. Our results have implications for practice strategies and J. R. Schubart (*) : R. B. Kass Department of Surgery, College of Medicine, The Pennsylvania State University, 500 University Drive, Hershey, PA 17033-0850, USA e-mail: [email protected] M. A. Farnan Palliative Care Center, Penn State Milton S. Hershey Medical Center, 500 University Drive, Hershey, PA 17033-0850, USA J. R. Schubart Department of Medicine, College of Medicine, The Pennsylvania State University, 500 University Drive, Hershey, PA 17033-0850, USA J. R. Schubart Department of Public Health Sciences, College of Medicine, The Pennsylvania State University, 500 University Drive, Hershey, PA 17033-0850, USA
development of educational interventions that will help breast cancer patients better understand their diagnosis and treatment options, encourage their participation in treatment decisionmaking, and provide psychosocial support for those at high risk for emotional distress. Keywords Breast cancer . Treatment . Decision-making . Survivorship . Qualitative . African-American . Focus group
Introduction African-American women are 25 % more likely to present with late stage breast cancer than white women largely due to compliance with screening recommendations. Research regarding racial differences has attributed delays in screening to limited knowledge about risk factors and seriousness of symptoms and the benefits of early detection as well as misconceptions and fatalistic attitudes about breast cancer, socioeconomic status, fear of diagnosis and treatments, family priorities, denial, and spirituality including faith-influenced delays [1, 2]. Prior research has used focus group methodology to investigate cultural factors impacting the breast cancer experience of women of various ethnicities including African-Americans [3]; however, this work has not specifically addressed the treatment decision-making. Although previous studies have demonstrated that multimedia tools are better than paper-based materials alone for explaining complex information such as surgical treatments [4–6], a review of the literature and the results of our recent survey of the American Society of Breast Surgeons membership [7] suggest that such tools are not widely implemented. As part of a project to develop an educational intervention for women diagnosed with breast cancer, we conducted this study to identify key issues faced by African-American women regarding breast cancer treatment decisions. This was an interpretive-descriptive study based on qualitative data obtained from focus groups.
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Materials and Methods Participants African-American female breast cancer survivors were recruited to participate in focus groups. Inclusion criteria included being 18 years of age or older, living within the city limits of Harrisburg, Pennsylvania, and having surgery for breast cancer in the past. Participants were recruited using flyers placed in African-American churches. After the study was explained by telephone, verbal consent was obtained and participants were selected from one of the three focus group dates/times. Using accepted focus group methodology, we kept the groups small enough to allow everyone to speak, but large enough to capture a range of views and experiences [8]. Participants completed a questionnaire to collect demographic information immediately prior to the focus groups. A $25 gift card was given at the end of the focus group session. Dinner was also provided at the time of the session. Data Collection and Analysis Three focus groups were conducted, each lasting 60 to 90 min. These were held in a private conference room in a community center in Harrisburg, Pennsylvania. An experienced focus group facilitator led the semi-structured sessions using a discussion guide developed by our study team (Table 1). Participants initially were asked to think back to when they were diagnosed with breast cancer and their visit with the breast surgeon. Questions were asked about the actual visit (who was present, who did most of the talking) and whether offered surgical treatment choices (mastectomy vs. breastconserving surgery). The prompts triggered memories and encouraged open discussion. The focus group discussions were audiotaped, transcribed, and reviewed for accuracy. The content of the interview transcripts were analyzed to identify themes [9] related to educational needs surrounding the decision to have surgery for breast cancer. The credibility of our interpretation of the results was enhanced by the different perspectives and interests of our research team [10] which included a physician (RK), a nurse educator (MF), and an experienced qualitative researcher (JS). The study was approved by the Penn State College of Medicine Institutional Review Board.
Results Fourteen women participated. All were African-American and lived in Harrisburg, Pennsylvania. Median age was 61.5 years (range 44–80). Eight women were educated through high school or less, three had completed 1–3 years of college, and three had a college degree.
J Canc Educ (2015) 30:497–502 Table 1 Focus group discussion guide 1. Introductions 2. Study description overview • Our goal is to conduct focus groups to gather data which will guide the tool development to help women make decisions about surgery related to their breast cancer. So, I would like for you to think back to when you were diagnosed with breast cancer and your visit with the breast surgeon? 3. Questions to guide the discussion • Thinking back to your visit with the breast surgeon, who else was there? • Did you go alone or bring someone else with? Who did you bring? (family, friends) • Who else was there from the doctor’s office? Nurse? Other clinicians? • Who did most of the talking? • How much time did you spend at that visit? • Were you offered choices between different kinds of surgery? (mastectomy, lumpectomy) • How were these procedures explained? (physician, nurse, pamphlet, video) Who explained? • Did you get all of your questions answered? • Did you feel like you understood the procedures and the risks, possible complications, and benefits? • Did you feel like you understood the pathology? Node biopsy? Other therapy? • Did you feel pressured (by anyone) to make a decision? • After your visit, did you feel prepared for the surgery? Did you seek out more information or advice? • Besides the information learned from the surgeon and nurses, where else did you get information (probe various sources: family, friends, internet, library) • After the surgery… • Was the recovery what you expected or was it more or less difficult? • Were you happy with the outcome? Did you have any regrets? • Would you have liked more information? • Computer usage • Do you have access to a computer? (home, friend/family, library) Internet access? Comfortable using a computer? Use a computer to get health information?
When asked about current health-care practice (prefocus group questionnaire), all 14 of the participants indicated that they had health insurance, had a personal doctor or health-care provider, and had a mammogram within the last 2 years. Thirteen had a checkup within the past 9 months. Twelve (two missing) women answered the question, “Did you not see a doctor in the past year due to cost?” All indicated that cost was not a barrier. The median age (11 responses, 3 missing) at first clinical breast exam was 20 years (range 16–45), and median age (12 responses, 2 missing) at first mammogram was 40 years (range 18–45). Three women had been diagnosed with breast cancer within 1–3 years of the focus group session, and all three were still
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in treatment. Two were diagnosed 3–5 years prior, six greater than 5 years since diagnosis, and three women greater than 10 years. One was stage 0, ten were stage 1, one was stage 2, and two were not sure of the stage. Eleven of the 14 women reported that they got regular mammograms prior to diagnosis. Of the three who did not get regular mammograms, one was stage 1 at the time of diagnosis, one was stage 2, and the other was “not sure”; all three reported that the breast cancer was self-discovered. We asked about sources of information used to learn about breast cancer. Thirteen indicated “doctor,” four checked “nurse,” six checked “family/friend,” five checked “cancer patient,” and five checked “internet.” Three themes were identified that describe participants’ recollection of their experiences: (1) fear across the breast cancer disease trajectory, (2) preference for visual information for understanding diagnosis and surgical treatment, and (3) reliance on family and friends for support. Theme 1 Fear was the first theme identified. For several women, this began with worry upon discovering a lump on self-exam and the apprehension of waiting for test results. Others recalled a routine mammography and the shock at diagnosis. They did not hear anything after the word cancer. “When they said cancer, I thought it was a death sentence. I just remember crying and someone said what are you crying for?” “I went home and watched t.v. It took three days to sink in.” Participants recalled fear at all points in their treatment. This was a consistent theme. The diagnosis triggered immediate emotional turmoil in the patient and her family. Even for those who were many years out from their cancer diagnosis, the memories and emotions were raw as they shared their stories. All of the women knew something about breast cancer before their diagnosis—generally from a family member or friend who had experienced breast cancer. The participants talked about the immediate and overwhelming fear and anxiety they felt about the possible treatments. “I was in shock and so was my husband. Life is going on around you, but you are like standing still. I’d have the chemo and go in my bedroom and wait for the next treatment.” “It was the treatment, not cancer, but the chemo that I was worried about.” “At first all I thought about was dying. My life changed.” Through their surgery and subsequent treatments, the participants recalled their dread and apprehension at each step. Several women mentioned the fear of upsetting family
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members, and several did not disclose their diagnosis to family right away for this reason. While some spoke in positive terms about the life-changing cancer experience, others live with a lingering fear of recurrence. “You don’t want to talk about it after diagnosed. You don’t want to tell your family right away. We suffer within. Should I tell them? Hold it in? It wears you down.” “I told my kids eventually, but not right away or in a way to worry them. I’m very spiritual and felt God would get me through.”
Theme 2 The second theme encompasses the information sources utilized about breast cancer treatment and the impact on patient’s decision-making. The physician was usually the first source of information, but because of the shock of hearing the diagnosis, the women recalled very little. “All I heard was ‘positive’ and then blah, blah, blah—I heard nothing else.” For all of the participants, the time spent with the surgeon was recalled as an hour or more, with the doctor doing most of talking. Most of the women recalled the surgeon using some sort of diagram to explain the surgery. They also remembered being given paper-based written materials to take home. “They gave me pamphlets to take…enough I could do a library.” “I was alone and sent to the (female) surgeon. I knew when she said those words lymph nodes that was real bad, but she said ‘no’ and explained it. She drew and showed where she would remove the lymph nodes as a precaution. I’m very visual if you tell me, it isn’t going to sink in.” “You fear the unknown, but by having the diagram step by step what he was going to do…I felt more sure. It was a printout and explained the ducts.” Their recollections of the initial visit with the surgeon were variable; some of the women felt informed, but others did not. “Nothing the breast surgeon said made sense. Maybe I just chose to blank it out. Only now do I understand the terms.” “Then we contacted a surgeon…a female…and, she had a wall diagram. I was pleased with the visit. She loaded a pink bag of brochures.” “I just wanted mastectomy. I was scared. Take everything off. Get rid of it! I didn’t have a lot of questions at
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the time, but later asked myself if they could have saved my breast.” There was a variation in the usefulness of the information provided by the health-care providers and whether participants felt it was sufficient to understand the surgical choices. “I was probably given written materials, but don’t remember reading any of it. My husband was very sick at the time. There was a lot going on. I had a mastectomy but no radiation, no chemo. Seeing a video would have helped.” “I didn’t seek out information for myself. Guess I was zoned out, but by the time the surgery was all over, I was informed and had read everything I could get my hands on.” When asked about their postoperative expectations and experiences, only one participant spoke about recovery from surgery; she was “sicker from anesthesia” and had more pain than she expected. The others described side effects from chemotherapy, radiation, and hormonal therapy (e.g., weight gain, memory problems). Except for one participant, the women did not use a computer to find information pre-surgery. The greatest source of information recounted was the experiences that the women heard about from family, friends, co-workers, and others. “My mother had cancer, but when it was my turn…well, that was different. I felt like the doctor was talking but I wasn’t really listening. Later on, I did a little follow-up on my own. Mainly [t.v.] talk shows. And the library and a little bit of computer.” “I had a mastectomy because of cancer being behind my breast, but I didn’t have the reconstructive surgery because I’d heard horror stories about that and silicon hardening and being unable to sleep. So that was the influence.”
Theme 3 The third theme identified encompassed the support systems, formal and informal, that participants used in their cancer journey. Beginning with the first clinic visit, there was a variation between women. Some went alone, and others took many family members and friends with them. Those with strong informal support had a more positive emotional journey. Several women were isolated; friends avoided them and their families were stressed. None of the women reported using formal support structures that extended outside the hospital or clinic walls.
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“I went alone the first time. I just remember the words, ‘you have breast cancer’. I guess she [the surgeon] could see I zoned out because she scheduled another visit. So, I brought my 3 sisters, 2 nieces, mother and daughter. They all had a billion questions.” “I didn’t reach out. No support groups. None of that. I didn’t come out of my bed room. It was like everyone else’s life is going on and mine stopped—surreal—outer body experience. Radiation scared me and I stayed tired.” “The Lord sent an angel in my life—a woman who had a double mastectemony, and I knew right then it would be okay.” “It was all so foreign.” In summary, our key themes were fear and worry across the breast cancer disease trajectory, a preference for visual information for understanding the diagnosis and surgical treatment, and support systems relying on family and friends, rather than the formal health-care system. Themes and related key findings are shown in Table 2.
Table 2 Themes and key findings 1. Fear and worry • Persists across the cancer disease trajectory • Initial fear shock at diagnosis (fear of dying) • Fear of side effects of adjuvant chemotherapy and radiation (more than the surgery) • Fear impact and burden of the cancer diagnosis and treatment on family • Fear of cancer recurrence 2. Information sources and knowledge about breast cancer • Surgeon was a trusted source of information • Diagrams and visual information provided by clinical team preferred (compared to pamphlets, books) • Too much information to fully comprehend initially (due to shock of diagnosis) • Family and friends who experienced breast cancer were the most trusted source of information • Some used internet; others were overwhelmed or scared by what they found • Not prepared for treatment side effects (more difficult than expected) • Lingering questions about treatment choices years later (Lumpectomy an option? Reconstructive surgery?) • New, unanswered concerns with aging 3. Support systems • Most brought family or friend to the visit with the breast surgeon • Family support varied (some women were isolated and lacked emotional support) • Spirituality and prayer • Formal support groups not utilized
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Discussion Several key findings from our study have implications for designing educational interventions. Consistent with other studies across ethnicities [3], the participants described their fear and distress beginning with the shock of diagnosis and anticipation of undergoing difficult treatment. Because they were often unable to think clearly enough to understand or remember what the physician said, providing a way for patients to review important information later (e.g., printouts to take home) or scheduling a second appointment to review the treatment plan are possible strategies. Diagrams were mentioned by several patients as being especially helpful in understanding their diagnosis and surgical treatment. We discovered that anecdotes and personal experiences that powerfully influence people’s decisions, perhaps even more so the facts and dispassionate information. This has important implications for how healthcare providers can engage patients in treatment planning discussions. Key influencing factors that shaped the focus group participants’ views about specific interventions were predominantly their own prior experiences with family and friends. Thus, it is important for health providers to be aware of preconceptions or misinformation that may influence patients’ decisions. Consistent with the focus group study by Ashing-Giwa et al. [3] that included 24 African-American women, the women in our study strongly recalled fears about death. Some of them worried about the impact of cancer on their families which added to their own stress and isolation, and others drew on the strength of their families and the AfricanAmerican community, often bringing friends and distant relatives to physician visits. Also, consistent with the experiences of African-American women in the aforementioned study, our participants did not use formal support groups. In contrast to this study, they did not express distrust for the health system; in fact, most of them described positive relationships with their physicians. Unlike results reported by Ashing-Giwa et al., none of the women in our study mentioned disparate treatment due to race. It is well-documented that breast cancer patients want to have an active role in decisions about their treatment [11–13]. In fact, shared decision-making has been correlated with higher satisfaction with treatment [14] and improved patient compliance with outcomes [15]. One of our study participants remarked, “I learned that if I just ask questions, the doctor will explain and I can make my own [treatment] plan.” Despite evidence, such as the study by Street et al. nearly two decades ago, reporting that patients participated more and learned more when using interactive multimedia program rather than print brochures [16], clinical practice has been slow to change and incorporate new tools.
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Information provided early in the disease trajectory (at diagnosis or upon completion of the primary treatment) may not be sufficient. Treatment side effects may persist well beyond the treatment phase [17]. Although information from the oncologist is viewed as valid because long-term survivors may see the oncologist only once a year, they may lack timely information [18]. This is especially true as women age and experience comorbidities [19]. Also, with the passage of time, the women in our study reported lingering uncertainty about recurrence. Uncertainty may be triggered by unexplained symptoms, mammograms, and other circumstances that lead to distress [20]. Like all studies, this research has several limitations including a small sample size, lack of geographic variation, and reliance on focus group methodology for data collection. For example, participants received treatment for their breast cancer at various facilities, and we do not know what health-care resources (e.g., social work, nurse navigation) were in place at the facilities and/or what was offered. Nevertheless, this study offers insights into how African-American breast cancer survivors recall their past experience considering treatment options.
Conclusion Overall, the findings from our focus group study of a sample of African-American breast cancer survivors demonstrate that patients experience substantial fear and distress. Their distress is heightened by the anticipation of undergoing difficult treatment, not just surgery but chemotherapy and radiation. Reliability of social support also affected distress. For example, some women relied heavily on family support and others hesitated to involve family for fear of being a burden. Our results have implications for practice strategies that will help breast cancer patients better understand their diagnosis and their treatment options, encourage active participation in decisionmaking, and identify those patients who lack psychosocial support. A formalized longer-term survivorship program would likely alleviate some of the distress beyond diagnosis and treatment phase. Acknowledgments The authors would like to thank Robin Perry Smith, focus group facilitator, and the Community Sciences and Health Outcomes (CSHO) Core, Penn State Hershey Cancer Institute, Hershey, Pennsylvania, for assisting with this research study. Conflict of Interest The authors declare that they have no conflict of interest. Ethical Standards This study was approved by the Penn State College of Medicine Institutional Review Board and was performed in accordance with the ethical standards laid down in the 1964 Declaration of Helsinki and its later amendments. The study participants gave their informed consent prior to their inclusion in the study.
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References 1. Gullatte MM, Phillips JM, Gibson LM (2006) Factors associated with delays in screening of self-detected breast changes in AfricanAmerican women. J Natl Black Nurses Assoc 17(1):45–50 2. Harris DM, Miller JE, Davis DM (2003) Racial differences in breast cancer screening, knowledge and compliance. J Natl Med Assoc 95(8):693–701 3. Ashing-Giwa KT, Padilla G, Tejero J et al (2004) Understanding the breast cancer experience of women: a qualitative study of African American, Asian American, Latina and Caucasian cancer survivors. Psychooncology 13(6):408–428 4. Evrard S, Mathoulin-Pelissier S, Larrue C et al (2005) Evaluation of a preoperative multimedia information program in surgical oncology. Eur J Surg Oncol 31(1):106–110 5. Eggers C, Obliers R, Koerfer A et al (2007) A multimedia tool for the informed consent of patients prior to gastric banding. Obesity (Silver Spring) 15(11):2866–2873 6. Bollschweiler E, Apitzsch J, Obliers R et al (2008) Improving informed consent of surgical patients using a multimedia-based program? Results of a prospective randomized multicenter study of patients before cholecystectomy. Ann Surg 248(2):205–211 7. Schubart JR, Dominici LS, Farnan M et al (2013) Shared decision making in breast cancer: national practice patterns of surgeons. Ann Surg Oncol 20(10):3323–3329 8. Krueger RA, Casey MA (2009) Focus groups: a practical guide for applied research, 4th edn. Sage, Thousand Oaks 9. Kidd PS, Parshall MB (2000) Getting the focus and the group: enhancing analytical rigor in focus group research. Qual Health Res 10(3):293–308 10. Patton MQ (2002) Qualitative evaluation and research methods, 3rd edn. Sage, Newbury Park
J Canc Educ (2015) 30:497–502 11. Degner LF, Kristjanson LJ, Bowman D et al (1997) Information needs and decisional preferences in women with breast cancer. JAMA 277(18):1485–1492 12. Lee MK, Noh DY, Nam SJ et al (2010) Association of shared decision-making with type of breast cancer surgery: a crosssectional study. BMC Health Serv Res 10:48 13. Keating NL, Guadagnoli E, Landrum MB et al (2002) Treatment decision making in early-stage breast cancer: should surgeons match patients’ desired level of involvement? J Clin Oncol 20(6):1473– 1479 14. Waljee JF, Rogers MA, Alderman AK (2007) Decision aids and breast cancer: do they influence choice for surgery and knowledge of treatment options? J Clin Oncol 25(9):1067–1073 15. Leclercq WK, Keulers BJ, Scheltinga MR et al (2010) A review of surgical informed consent: past, present, and future. A quest to help patients make better decisions. World J Surg 34(7):1406–1415 16. Street RL, Voigt B, Geyer C et al (1995) Increasing patient involvement in choosing treatment for early breast cancer. Cancer 76(11): 2275–2285 17. Ganz PA, Greendale GA, Peterson L et al (2000) Managing menopausal symptoms in breast cancer survivors: results of a randomized controlled trial. J Natl Cancer Inst 92(13):1054–1064 18. Silliman RA, Duke KA, Sullivan LM et al (1998) Breast cancer care in older women. Cancer 83(4):706–711 19. Gill KM, Mishel MH, Belyea M et al (2004) Triggers of uncertainty about recurrence and long-term treatment side effects in older African American and Caucasian breast cancer survivors. Oncol Nurs Forum 31(3):633–639 20. Mishel MH, Germino BB, Gil KIM et al (2005) Benefits from an uncertainty management intervention for African-American and Caucasian older long-term breast cancer survivors. Psychooncology 14(11):962–978
Breast Cancer Surgery Decision-Making and African-American Women Jane R. Schubart & Michelle A. Farnan & Rena B. Kass
Published online: 9 September 2014 # Springer Science+Business Media New York 2014
Abstract Prior research has used focus group methodology to investigate cultural factors impacting the breast cancer experience of women of various ethnicities including AfricanAmericans; however, this work has not specifically addressed treatment decision-making. This study identifies key issues faced by African-American women diagnosed with breast cancer regarding treatment decisions. We used an interpretivedescriptive study design based on qualitative data from three focus groups (n=14) representing a population of AfricanAmerican women in central Pennsylvania. Participants were asked to think back to when they were diagnosed with breast cancer and their visit with the breast surgeon. Questions were asked about the actual visit, treatment choices offered, sources of information, and whether the women felt prepared for the surgery and subsequent treatments. The prompts triggered memories and encouraged open discussion. The most important themes identified were fear across the breast cancer disease trajectory, a preference for visual information for understanding the diagnosis and surgical treatment, and support systems relying on family and friends, rather than the formal health-care system. Our results have implications for practice strategies and J. R. Schubart (*) : R. B. Kass Department of Surgery, College of Medicine, The Pennsylvania State University, 500 University Drive, Hershey, PA 17033-0850, USA e-mail: [email protected] M. A. Farnan Palliative Care Center, Penn State Milton S. Hershey Medical Center, 500 University Drive, Hershey, PA 17033-0850, USA J. R. Schubart Department of Medicine, College of Medicine, The Pennsylvania State University, 500 University Drive, Hershey, PA 17033-0850, USA J. R. Schubart Department of Public Health Sciences, College of Medicine, The Pennsylvania State University, 500 University Drive, Hershey, PA 17033-0850, USA
development of educational interventions that will help breast cancer patients better understand their diagnosis and treatment options, encourage their participation in treatment decisionmaking, and provide psychosocial support for those at high risk for emotional distress. Keywords Breast cancer . Treatment . Decision-making . Survivorship . Qualitative . African-American . Focus group
Introduction African-American women are 25 % more likely to present with late stage breast cancer than white women largely due to compliance with screening recommendations. Research regarding racial differences has attributed delays in screening to limited knowledge about risk factors and seriousness of symptoms and the benefits of early detection as well as misconceptions and fatalistic attitudes about breast cancer, socioeconomic status, fear of diagnosis and treatments, family priorities, denial, and spirituality including faith-influenced delays [1, 2]. Prior research has used focus group methodology to investigate cultural factors impacting the breast cancer experience of women of various ethnicities including African-Americans [3]; however, this work has not specifically addressed the treatment decision-making. Although previous studies have demonstrated that multimedia tools are better than paper-based materials alone for explaining complex information such as surgical treatments [4–6], a review of the literature and the results of our recent survey of the American Society of Breast Surgeons membership [7] suggest that such tools are not widely implemented. As part of a project to develop an educational intervention for women diagnosed with breast cancer, we conducted this study to identify key issues faced by African-American women regarding breast cancer treatment decisions. This was an interpretive-descriptive study based on qualitative data obtained from focus groups.
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Materials and Methods Participants African-American female breast cancer survivors were recruited to participate in focus groups. Inclusion criteria included being 18 years of age or older, living within the city limits of Harrisburg, Pennsylvania, and having surgery for breast cancer in the past. Participants were recruited using flyers placed in African-American churches. After the study was explained by telephone, verbal consent was obtained and participants were selected from one of the three focus group dates/times. Using accepted focus group methodology, we kept the groups small enough to allow everyone to speak, but large enough to capture a range of views and experiences [8]. Participants completed a questionnaire to collect demographic information immediately prior to the focus groups. A $25 gift card was given at the end of the focus group session. Dinner was also provided at the time of the session. Data Collection and Analysis Three focus groups were conducted, each lasting 60 to 90 min. These were held in a private conference room in a community center in Harrisburg, Pennsylvania. An experienced focus group facilitator led the semi-structured sessions using a discussion guide developed by our study team (Table 1). Participants initially were asked to think back to when they were diagnosed with breast cancer and their visit with the breast surgeon. Questions were asked about the actual visit (who was present, who did most of the talking) and whether offered surgical treatment choices (mastectomy vs. breastconserving surgery). The prompts triggered memories and encouraged open discussion. The focus group discussions were audiotaped, transcribed, and reviewed for accuracy. The content of the interview transcripts were analyzed to identify themes [9] related to educational needs surrounding the decision to have surgery for breast cancer. The credibility of our interpretation of the results was enhanced by the different perspectives and interests of our research team [10] which included a physician (RK), a nurse educator (MF), and an experienced qualitative researcher (JS). The study was approved by the Penn State College of Medicine Institutional Review Board.
Results Fourteen women participated. All were African-American and lived in Harrisburg, Pennsylvania. Median age was 61.5 years (range 44–80). Eight women were educated through high school or less, three had completed 1–3 years of college, and three had a college degree.
J Canc Educ (2015) 30:497–502 Table 1 Focus group discussion guide 1. Introductions 2. Study description overview • Our goal is to conduct focus groups to gather data which will guide the tool development to help women make decisions about surgery related to their breast cancer. So, I would like for you to think back to when you were diagnosed with breast cancer and your visit with the breast surgeon? 3. Questions to guide the discussion • Thinking back to your visit with the breast surgeon, who else was there? • Did you go alone or bring someone else with? Who did you bring? (family, friends) • Who else was there from the doctor’s office? Nurse? Other clinicians? • Who did most of the talking? • How much time did you spend at that visit? • Were you offered choices between different kinds of surgery? (mastectomy, lumpectomy) • How were these procedures explained? (physician, nurse, pamphlet, video) Who explained? • Did you get all of your questions answered? • Did you feel like you understood the procedures and the risks, possible complications, and benefits? • Did you feel like you understood the pathology? Node biopsy? Other therapy? • Did you feel pressured (by anyone) to make a decision? • After your visit, did you feel prepared for the surgery? Did you seek out more information or advice? • Besides the information learned from the surgeon and nurses, where else did you get information (probe various sources: family, friends, internet, library) • After the surgery… • Was the recovery what you expected or was it more or less difficult? • Were you happy with the outcome? Did you have any regrets? • Would you have liked more information? • Computer usage • Do you have access to a computer? (home, friend/family, library) Internet access? Comfortable using a computer? Use a computer to get health information?
When asked about current health-care practice (prefocus group questionnaire), all 14 of the participants indicated that they had health insurance, had a personal doctor or health-care provider, and had a mammogram within the last 2 years. Thirteen had a checkup within the past 9 months. Twelve (two missing) women answered the question, “Did you not see a doctor in the past year due to cost?” All indicated that cost was not a barrier. The median age (11 responses, 3 missing) at first clinical breast exam was 20 years (range 16–45), and median age (12 responses, 2 missing) at first mammogram was 40 years (range 18–45). Three women had been diagnosed with breast cancer within 1–3 years of the focus group session, and all three were still
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in treatment. Two were diagnosed 3–5 years prior, six greater than 5 years since diagnosis, and three women greater than 10 years. One was stage 0, ten were stage 1, one was stage 2, and two were not sure of the stage. Eleven of the 14 women reported that they got regular mammograms prior to diagnosis. Of the three who did not get regular mammograms, one was stage 1 at the time of diagnosis, one was stage 2, and the other was “not sure”; all three reported that the breast cancer was self-discovered. We asked about sources of information used to learn about breast cancer. Thirteen indicated “doctor,” four checked “nurse,” six checked “family/friend,” five checked “cancer patient,” and five checked “internet.” Three themes were identified that describe participants’ recollection of their experiences: (1) fear across the breast cancer disease trajectory, (2) preference for visual information for understanding diagnosis and surgical treatment, and (3) reliance on family and friends for support. Theme 1 Fear was the first theme identified. For several women, this began with worry upon discovering a lump on self-exam and the apprehension of waiting for test results. Others recalled a routine mammography and the shock at diagnosis. They did not hear anything after the word cancer. “When they said cancer, I thought it was a death sentence. I just remember crying and someone said what are you crying for?” “I went home and watched t.v. It took three days to sink in.” Participants recalled fear at all points in their treatment. This was a consistent theme. The diagnosis triggered immediate emotional turmoil in the patient and her family. Even for those who were many years out from their cancer diagnosis, the memories and emotions were raw as they shared their stories. All of the women knew something about breast cancer before their diagnosis—generally from a family member or friend who had experienced breast cancer. The participants talked about the immediate and overwhelming fear and anxiety they felt about the possible treatments. “I was in shock and so was my husband. Life is going on around you, but you are like standing still. I’d have the chemo and go in my bedroom and wait for the next treatment.” “It was the treatment, not cancer, but the chemo that I was worried about.” “At first all I thought about was dying. My life changed.” Through their surgery and subsequent treatments, the participants recalled their dread and apprehension at each step. Several women mentioned the fear of upsetting family
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members, and several did not disclose their diagnosis to family right away for this reason. While some spoke in positive terms about the life-changing cancer experience, others live with a lingering fear of recurrence. “You don’t want to talk about it after diagnosed. You don’t want to tell your family right away. We suffer within. Should I tell them? Hold it in? It wears you down.” “I told my kids eventually, but not right away or in a way to worry them. I’m very spiritual and felt God would get me through.”
Theme 2 The second theme encompasses the information sources utilized about breast cancer treatment and the impact on patient’s decision-making. The physician was usually the first source of information, but because of the shock of hearing the diagnosis, the women recalled very little. “All I heard was ‘positive’ and then blah, blah, blah—I heard nothing else.” For all of the participants, the time spent with the surgeon was recalled as an hour or more, with the doctor doing most of talking. Most of the women recalled the surgeon using some sort of diagram to explain the surgery. They also remembered being given paper-based written materials to take home. “They gave me pamphlets to take…enough I could do a library.” “I was alone and sent to the (female) surgeon. I knew when she said those words lymph nodes that was real bad, but she said ‘no’ and explained it. She drew and showed where she would remove the lymph nodes as a precaution. I’m very visual if you tell me, it isn’t going to sink in.” “You fear the unknown, but by having the diagram step by step what he was going to do…I felt more sure. It was a printout and explained the ducts.” Their recollections of the initial visit with the surgeon were variable; some of the women felt informed, but others did not. “Nothing the breast surgeon said made sense. Maybe I just chose to blank it out. Only now do I understand the terms.” “Then we contacted a surgeon…a female…and, she had a wall diagram. I was pleased with the visit. She loaded a pink bag of brochures.” “I just wanted mastectomy. I was scared. Take everything off. Get rid of it! I didn’t have a lot of questions at
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the time, but later asked myself if they could have saved my breast.” There was a variation in the usefulness of the information provided by the health-care providers and whether participants felt it was sufficient to understand the surgical choices. “I was probably given written materials, but don’t remember reading any of it. My husband was very sick at the time. There was a lot going on. I had a mastectomy but no radiation, no chemo. Seeing a video would have helped.” “I didn’t seek out information for myself. Guess I was zoned out, but by the time the surgery was all over, I was informed and had read everything I could get my hands on.” When asked about their postoperative expectations and experiences, only one participant spoke about recovery from surgery; she was “sicker from anesthesia” and had more pain than she expected. The others described side effects from chemotherapy, radiation, and hormonal therapy (e.g., weight gain, memory problems). Except for one participant, the women did not use a computer to find information pre-surgery. The greatest source of information recounted was the experiences that the women heard about from family, friends, co-workers, and others. “My mother had cancer, but when it was my turn…well, that was different. I felt like the doctor was talking but I wasn’t really listening. Later on, I did a little follow-up on my own. Mainly [t.v.] talk shows. And the library and a little bit of computer.” “I had a mastectomy because of cancer being behind my breast, but I didn’t have the reconstructive surgery because I’d heard horror stories about that and silicon hardening and being unable to sleep. So that was the influence.”
Theme 3 The third theme identified encompassed the support systems, formal and informal, that participants used in their cancer journey. Beginning with the first clinic visit, there was a variation between women. Some went alone, and others took many family members and friends with them. Those with strong informal support had a more positive emotional journey. Several women were isolated; friends avoided them and their families were stressed. None of the women reported using formal support structures that extended outside the hospital or clinic walls.
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“I went alone the first time. I just remember the words, ‘you have breast cancer’. I guess she [the surgeon] could see I zoned out because she scheduled another visit. So, I brought my 3 sisters, 2 nieces, mother and daughter. They all had a billion questions.” “I didn’t reach out. No support groups. None of that. I didn’t come out of my bed room. It was like everyone else’s life is going on and mine stopped—surreal—outer body experience. Radiation scared me and I stayed tired.” “The Lord sent an angel in my life—a woman who had a double mastectemony, and I knew right then it would be okay.” “It was all so foreign.” In summary, our key themes were fear and worry across the breast cancer disease trajectory, a preference for visual information for understanding the diagnosis and surgical treatment, and support systems relying on family and friends, rather than the formal health-care system. Themes and related key findings are shown in Table 2.
Table 2 Themes and key findings 1. Fear and worry • Persists across the cancer disease trajectory • Initial fear shock at diagnosis (fear of dying) • Fear of side effects of adjuvant chemotherapy and radiation (more than the surgery) • Fear impact and burden of the cancer diagnosis and treatment on family • Fear of cancer recurrence 2. Information sources and knowledge about breast cancer • Surgeon was a trusted source of information • Diagrams and visual information provided by clinical team preferred (compared to pamphlets, books) • Too much information to fully comprehend initially (due to shock of diagnosis) • Family and friends who experienced breast cancer were the most trusted source of information • Some used internet; others were overwhelmed or scared by what they found • Not prepared for treatment side effects (more difficult than expected) • Lingering questions about treatment choices years later (Lumpectomy an option? Reconstructive surgery?) • New, unanswered concerns with aging 3. Support systems • Most brought family or friend to the visit with the breast surgeon • Family support varied (some women were isolated and lacked emotional support) • Spirituality and prayer • Formal support groups not utilized
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Discussion Several key findings from our study have implications for designing educational interventions. Consistent with other studies across ethnicities [3], the participants described their fear and distress beginning with the shock of diagnosis and anticipation of undergoing difficult treatment. Because they were often unable to think clearly enough to understand or remember what the physician said, providing a way for patients to review important information later (e.g., printouts to take home) or scheduling a second appointment to review the treatment plan are possible strategies. Diagrams were mentioned by several patients as being especially helpful in understanding their diagnosis and surgical treatment. We discovered that anecdotes and personal experiences that powerfully influence people’s decisions, perhaps even more so the facts and dispassionate information. This has important implications for how healthcare providers can engage patients in treatment planning discussions. Key influencing factors that shaped the focus group participants’ views about specific interventions were predominantly their own prior experiences with family and friends. Thus, it is important for health providers to be aware of preconceptions or misinformation that may influence patients’ decisions. Consistent with the focus group study by Ashing-Giwa et al. [3] that included 24 African-American women, the women in our study strongly recalled fears about death. Some of them worried about the impact of cancer on their families which added to their own stress and isolation, and others drew on the strength of their families and the AfricanAmerican community, often bringing friends and distant relatives to physician visits. Also, consistent with the experiences of African-American women in the aforementioned study, our participants did not use formal support groups. In contrast to this study, they did not express distrust for the health system; in fact, most of them described positive relationships with their physicians. Unlike results reported by Ashing-Giwa et al., none of the women in our study mentioned disparate treatment due to race. It is well-documented that breast cancer patients want to have an active role in decisions about their treatment [11–13]. In fact, shared decision-making has been correlated with higher satisfaction with treatment [14] and improved patient compliance with outcomes [15]. One of our study participants remarked, “I learned that if I just ask questions, the doctor will explain and I can make my own [treatment] plan.” Despite evidence, such as the study by Street et al. nearly two decades ago, reporting that patients participated more and learned more when using interactive multimedia program rather than print brochures [16], clinical practice has been slow to change and incorporate new tools.
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Information provided early in the disease trajectory (at diagnosis or upon completion of the primary treatment) may not be sufficient. Treatment side effects may persist well beyond the treatment phase [17]. Although information from the oncologist is viewed as valid because long-term survivors may see the oncologist only once a year, they may lack timely information [18]. This is especially true as women age and experience comorbidities [19]. Also, with the passage of time, the women in our study reported lingering uncertainty about recurrence. Uncertainty may be triggered by unexplained symptoms, mammograms, and other circumstances that lead to distress [20]. Like all studies, this research has several limitations including a small sample size, lack of geographic variation, and reliance on focus group methodology for data collection. For example, participants received treatment for their breast cancer at various facilities, and we do not know what health-care resources (e.g., social work, nurse navigation) were in place at the facilities and/or what was offered. Nevertheless, this study offers insights into how African-American breast cancer survivors recall their past experience considering treatment options.
Conclusion Overall, the findings from our focus group study of a sample of African-American breast cancer survivors demonstrate that patients experience substantial fear and distress. Their distress is heightened by the anticipation of undergoing difficult treatment, not just surgery but chemotherapy and radiation. Reliability of social support also affected distress. For example, some women relied heavily on family support and others hesitated to involve family for fear of being a burden. Our results have implications for practice strategies that will help breast cancer patients better understand their diagnosis and their treatment options, encourage active participation in decisionmaking, and identify those patients who lack psychosocial support. A formalized longer-term survivorship program would likely alleviate some of the distress beyond diagnosis and treatment phase. Acknowledgments The authors would like to thank Robin Perry Smith, focus group facilitator, and the Community Sciences and Health Outcomes (CSHO) Core, Penn State Hershey Cancer Institute, Hershey, Pennsylvania, for assisting with this research study. Conflict of Interest The authors declare that they have no conflict of interest. Ethical Standards This study was approved by the Penn State College of Medicine Institutional Review Board and was performed in accordance with the ethical standards laid down in the 1964 Declaration of Helsinki and its later amendments. The study participants gave their informed consent prior to their inclusion in the study.
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