Health Care for Women International, 35:1339–1353, 2014 Copyright © Taylor & Francis Group, LLC ISSN: 0739-9332 print / 1096-4665 online DOI: 10.1080/07399332.2014.942905
Experiences of Coexisting With Chronic Illnesses Among Elderly Women in Communities YU-MEI CHANG Nursing Department, Oriental Institute of Technology; and Nursing Department and Graduate School, National Taipei University of Nursing and Health Sciences, Taipei City, Taiwan
LEE-ING TSAO Nursing Department, National Taipei University of Nursing and Health Sciences, Taipei City, Taiwan
MIN-HIS HUANG Nursing Department, Far Eastern Memorial Hospital, Taipei City, Taiwan
Based on the increasing numbers of women in the aging population, the health of women will become critical in the future. Our purpose in this study was to analyze the experiences of elderly women with chronic illness. Twelve elderly Taiwanese women participated in in-depth interviews. “Using my own power out of the disease shackle” was the core category referring to elderly women who coexist with chronic illnesses. Elderly women should be provided with individually targeted plans for disease management and health maintenance to enable them to participate in health care decisions at the onset of chronic diseases. The increasing number of women in the aging population requires a reframing of how people view the planning and delivery of health care services to reflect a gendered approach (Frye, Putnam, & O’Campo, 2008). As women age, they frequently experience multiple chronic and complex health conditions, such as heart disease and arthritis, which affect their health and well-being (Davidson et al., 2003). People with chronic illness would experience loss of self, which is suffering from living a restrictive life, Received 26 January 2014; accepted 5 June 2014. Address correspondence to Lee-Ing Tsao, Nursing Department, National Taipei University of Nursing and Health Sciences, No. 365, Ming-Te Road, Peitou District, Taipei City 112, Taiwan. E-mail: [email protected] or [email protected] 1339
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existing in social isolation, experiencing discredited definitions of self, and becoming a burden (Charmaz, 1983). The health of women will become a critical concern in the near future because of their increased longevity and morbidity and decreased access to health care, as compared with men (Davidson, DiGiacomo, & McGrath, 2011). Currently, the average life expectancy for women is at least 6 years longer than for men in Taiwan. It is common for elderly women to live with their chronic diseases silently in the community. While there is Western research on the subject, there are few studies of aging women in Taiwan on this topic. Neill (2005) focused on the meaning of health among women living with chronic illnesses. This research elucidated the meaning of health in seven women aged 44 to 78 years, diagnosed with multiple sclerosis or rheumatoid arthritis from Newman’s theoretical view of health. In the Neill sample, women progressed through stages consistent with Newman’s (1997) turning points of movement, as well as clear choice points marked by intentional change before they found new ways of living. New ways of living included the following: finding simple pleasures, being positive, gaining self-control, and achieving self-differentiation (Neill, 2005). Charmaz (2006) conducted 165 qualitative interviews with chronically ill people and elucidated how people with chronic illnesses cope by measuring their pursuits as indicators of their health and adopting such measures as markers of who they are. The findings indicated that measuring pursuits includes scrutinizing involvements, accounting for illness, and setting priorities. The participants interpreted and constructed markers from their measures and preserved self through fitness. Harvey (2006) investigated the role of spirituality in the self-management of chronic illness. A sample of 10 African American women was used to collect information from semistructured interviews. Data were analyzed for common themes through narrative analysis. Four themes emerged from the linkage of spirituality and self-management. Shawler and Logsdon (2008) observed how elderly women coped with hip fracture. Thirteen minority women aged 63 to 88 years with chronic illness participated in the study. The findings indicated four themes: (a) positive self-talk, (b) strong spiritual faith, (c) refusal to dwell on deficits, and (d) sense of survival. Three of the five concepts in the Evolutionary Empowerment–Strength model were supported, which demonstrated initial usefulness of the model for varied populations. Shearer, Fleury, and Reed (2009) used focus group interviews with 51 women, aged 55 to 93 years, to obtain a deeper understanding of the meaning of health from the perspective of elderly women. A Rogerian perspective of human health provided a broad conceptual lens for the study. Three themes explicating the meanings of health emerged from the data: realizing the potential for purpose, listening to energy flow, and purposefully participating in health-related changes. The three themes represented the manner
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in which the women contended with the paradoxes posed by their chronic illnesses (Shearer et al., 2009). To distinguish areas for future research, Davidson and colleagues (2011) conducted an integrative review to identify the concerns and challenges that aging women face. They observed that many elderly women continue to face inequities related to health and are often invisible in the discourse on aging policy. This study argued for a greater focus on the unique needs of women, a gendered approach to policy and intervention development, and promotion of the lifelong health of women. Policymakers, health care workers, and researchers must consider the perspective of gender as well as age when implementing and evaluating effective interventions (Davidson et al., 2011). Researchers have provided an initial understanding of the dimensions and meanings of health among elderly adults in general, and specifically among elderly women with chronic illnesses. The next steps must include continuing to study elderly women, as well as examining the empirical findings from this and previous studies from a theoretical perspective; therefore, research aimed at developing empirically based theory of health for elderly women with chronic illnesses is necessary, based on themes of health generated from participant views (Shearer & Fleury, 2006). Although there is infinitely more women’s health research about reproductive and maternal health (Raymond, Greenberg, & Leeder, 2005), researchers have been studying the issues of elderly women for at least 30 years. Because research on elderly women with chronic diseases is rare in Taiwan, it was there that we conducted an in-depth qualitative study to explore and elucidate the subjective experiences of coexisting with chronic diseases among elderly women. We hope that the study results can be used as a future reference for health care planning.
METHODS Design Grounded theory research methods were used to establish a descriptive theory of the subjective life experiences of elderly Taiwanese women and how they coexist with chronic diseases. The descriptive theory included how these women view chronic diseases, how they treat their chronic diseases, how they use support systems to manage chronic diseases, and how they pursue improved health. Grounded theory is a qualitative method for developing a substantive theory that involves using systematic data collection and data analysis through the research process. One key strategy of grounded theory is to collect data from the participant’s perspective. Through mutual interactions between researchers and participants, meaningful and contextualized data
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are collected and analyzed (Strauss & Corbin, 1990), and new insights are thereby revealed. Grounded theory analyses can then provide physicians with alternative understandings of patients’ beliefs and actions than those readily available in clinical settings (Charmaz, 1990). The methods and techniques of the grounded theory approach guide the researcher to ask questions about how and why people interact with society and how this interaction influences the meaning in their lives.
Participants To ensure a smooth recruitment process, a community health nursing department, home care nurses, and primary care physicians were asked to collaborate in this study. To build trust between the participants and the researcher, the researcher accompanied home care nurses on home visits prior to recruitment for the study. When an appropriate case for this study was identified during the home care service based on understanding patient care needs and providing appropriate care, the home care nurse assisted the researchers in recruiting and obtaining consent from the prospective participant. Primary care physicians were asked to screen appropriate potential participants during clinic hours before the researcher contacted the prospective participants to ascertain their willingness to participate in the study. Inclusion criteria included women who (a) were 65 years of age or older; (b) had one or more chronic diseases; (c) were able to communicate in Mandarin Chinese or Taiwanese; (d) had normal hearing or used a hearing aid; and (e) had normal cognitive functions, were able to answer questions, and had signed a consent form.
Ethical Considerations This study was evaluated and approved by the Institutional Review Board of Far Eastern Memorial Hospital. Elderly women were asked if they would be willing to participate in the study and share their experiences related to coexisting with chronic diseases. Initial contact with the participants was made after home care nurses or primary care physicians introduced them to the researchers to establish a relationship. After receiving an initial oral agreement, the researchers explained the purpose of the study and obtained signed consent forms. An appointment was made with the participants to conduct individual interviews. In consideration of patient privacy and convenience, the participants determined where the interviews were to be conducted. The participants were assured that all information would be anonymous and were allowed to withdraw from the study at any time. Of the 12 participants, two were interviewed at the hospital during their revisit and 10 were interviewed
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in their homes. In addition, the participants were given a gift valued at U.S. $7.00. Some of the participants refused to accept the gifts, however, because they viewed their participation as a type of contribution providing their life experiences for the study.
Data Collection and Analysis The researchers conducted the interviews in person. We considered participants’ physical energy; therefore, the interview time did not surpass 60 minutes. Prior to the interview, a phone call was made to the participant to summarize what would be discussed during the interview. The interview questions included the following: • • • • • •
How did you discover that you have a chronic disease? What do you normally do to take care of yourself? What steps do you take to understand how to manage your disease? How do you manage your disease? In your everyday life, how do you take care of yourself? What resources do you use to help you understand your disease and the treatment of your disease? • In the course of your disease, what problems have you encountered? How did you resolve them? • Who is in your network of contacts, and how do the people in your network affect the treatment and management of your disease? • How do you cope living with your disease? The recorded interviews were transcribed and analyzed by the researchers and an expert in nursing research. Each sentence and paragraph was studied and analyzed to conceptualize these interviews. Each concept was coded, and similar concepts were grouped into categories. When additional data were available, the categories were clarified or modified until the core categories were developed. The process of data analysis entailed continual collection, comparison, and evaluation. When there was a difference of opinion, this process was repeated for clarification. The interviews were conducted in Taiwanese or Mandarin Chinese and translated into English after the themes were identified by the researchers. They were verified by a bilingual individual who was proficient in both Chinese and English and experienced in academic translation. The analysis began by openly encoding the first interview. The second interview was then compared with the first. All data were processed using the same method. The next step was to capture the substance of the data by breaking it down into identifiable substantive codes that illustrated the influence of caring situations. The various codes and interviews were compared
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with each other to strengthen their identification. The codes were labeled with origin words from the data (Glaser, 1978; Glaser & Strauss, 1967).
Trustworthiness The researcher used four criteria to evaluate the rigor of the study to ensure the trustworthiness of the research process: (a) credibility, (b) transferability, (c) dependability, and (d) confirmability (Denzin & Lincoln, 2005; Graneheim & Lundman, 2004). To establish credibility, the interviews were conducted in Taiwanese or Mandarin Chinese. Open-ended and in-depth interviews were used in which the participants described subjective experiences of coexisting with chronic illnesses. During the process of data analysis, the researchers were able to continue discussions with the senior nursing expert and to make necessary revisions. After the themes were identified, they were translated into English. Regarding transferability, despite diverse backgrounds, all interviewees recounted personal stories with great sincerity and enthusiasm. During data collection and analysis, the researcher and the senior nursing expert constantly compared, recoded, confirmed, and reconfirmed to establish dependability. Finally, confirmability was attained using audiotapes and summary notes that were written on the day of the interview.
RESULTS In this study, 12 elderly women with chronic illnesses, living in communities, participated in in-depth interviews. The interview period was 2011–2012. The average age was 73 years (range, 66–80 years). The demographic and clinical characteristics of the participants are summarized in Table 1. TABLE 1 Older Women’s Demographics Age (years)
Education
78 74 67 72 66
Elementary school Elementary school Junior high school Junior high school Junior high school
72 76 68 80 76 69
Elementary school Junior college Junior college Elementary school Elementary school Junior high school
74
Elementary school
Type of disease Diabetes Diabetes Diabetes Diabetes Hypertension, chronic arthritis Chronic arthritis Diabetes, hypertension Hypertension Chronic arthritis Diabetes, hypertension Diabetes, hypertension, stroke Diabetes, hypertension
Years spent living with the disease 18 15 10 10 10 15 17 16 20 12 7 28
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The interviews were conducted in Taiwanese or Mandarin Chinese and translated into English after the themes were identified by the researchers. Six main categories were observed to be the most distinctive aspects of the experience of coexisting with chronic illnesses among the participants in this study. The core categories identified and described were abstracted to a theoretical level and are summarized in Figure 1. “Using my own power out of the disease shackle” was the core category for presenting the elderly women who coexist with chronic illness in their own ways. “Perceiving warning discomfort” was identified as the antecedent condition. The participants then began the process of “using my own power out of the disease shackle.” The elderly women reported five interactive categories: “self-reflection on disease signs and symptoms,” “judicious self-care of the disease,” “receiving support from family,” “using outside resources,” and “empowering oneself to confront the disease.” All of the categories were interrelated and influenced one another, and therefore they appear somewhat redundant. Hence, they were separated with the aim of generating a core category. After the phase of “empowering oneself to confront the disease,” the elderly women reached the outcome of “rebirth and energy.”
Using My Own Power Out of the Disease Shackle All 12 elderly women with chronic diseases expressed that they underwent a self-encouragement process, and with the help of friends or family and the use of health resources, they were able to coexist peacefully with their diseases. They were no longer anxious, and they were able to actively view their diseases, and the changes in their lives caused by these diseases, in a positive light. One participant recounted her feelings: To accept it, not to be afraid, to think of it as a part of life. I don’t regard myself as the patient, I’m strong and stand up to face this chronic disease, to find what I wanted.
Another participant stated her belief: Although chronic diseases make my life inconvenient compared with ordinary people, I am willing to spend twice as much time to complete the same things.
Perceiving Warning Discomfort All of the participants discovered their diseases after experiencing various physical symptoms including excessive thirst or hunger. Eating or drinking
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FIGURE 1 The process of “using my own power out of disease shackle” among elderly women with chronic illness in Taiwan.
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too much and excessive urinary output are three common symptoms of diabetes, and dizziness is a symptom of the early stages of hypertension. Changes in mobility often occur in patients with osteoarthritis. These symptoms are commonly recognized among the public; therefore, when these women began to exhibit these symptoms, they were sufficiently aware, or their families were sufficiently aware, of the implications and needed to seek medical attention immediately and receive an accurate diagnosis, as one participant reported: Symptoms occurred very quickly, very suddenly, and I thought that I must be sick. I went to a nearby clinic to see a doctor, and the results looked very serious.
Another participant told her story: I went to the hospital for a blood check, and the doctors told me that I had diabetes; it came quickly.
Self-Reflection on Disease Signs and Symptoms The participants expressed that they were unable to accept their chronic diseases immediately after diagnosis. They speculated that the disease was genetic or was caused by a poor diet and, therefore, began to examine whether they had made mistakes in their lives. Later, possibly because relatives were also diagnosed with chronic diseases, they felt relieved and began to accept their diagnoses, as one participant stated: At first I suspected that my illness was caused by genetics, but I did not know whether my parents also had the same disease. I began to reflect on my daily habits, really unacceptable.
Another participant expressed her opinion: I think getting sick causes too much pressure.
Judicious Self-Care of the Disease Three participants revealed that after suspecting that they were ill and then receiving a diagnosis, the management of their disease became the primary mission in their lives. The resultant change in lifestyle was the most troubling aspect of their chronic diseases. To achieve the goal of controlling blood sugar, these participants monitored the amount of each type of food, tested blood sugar levels every time they ate, formulated a method of determining the effect of various foods on blood sugar, and provided their own food
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as often as possible. In addition, the participants were also wary of blood pressure and blood values. One participant stated her experience: Physicians prescribed medication for me, and I started to amend my eating habits. When my blood sugar level is not normal, I adjust my diet; normally, I’ll eat a little more.
Another woman said that she self-monitors: If I feel uncomfortable, I check my blood pressure immediately. If it’s relatively high, I become nervous.
Receiving Support From Family The participants expressed that the care demonstrated by their children during the course of their diseases was helpful in adjusting to the diseases and in establishing a new lifestyle for themselves. The ways in which the children cared for their mothers included sharing their knowledge of health; learning healthy habits alongside their mothers, such as controlling their weight or consuming certain types of food; assisting in making medical identification cards; and preparing snacks to prevent low blood sugar when their mothers were away from home. One participant recounted her family’s participation: My family told me not to eat certain foods, and family dinners also fit my diet.
Another participant recounted her experience: My family helped me collect data about diabetes, and also helped me prepare sweets to carry in my bag.
Using Outside Resources In the process of adjusting to chronic diseases, the participants efficiently used external health resources. These health resources were provided by physicians, nurses, and diabetes educators, and by television, newspapers, magazines, and other media. In addition, these women acquired health resources by participating in community activities and support groups, or by sharing information with support groups. The participants were encouraged to escape the limitations of being chronically ill and achieve a balance between life and self-growth.
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One participant stated the following: I learned from relatives and friends who have chronic diseases. Neighbors taught me some management methods, and I was very touched.
Another participant talked about her experience: After referral to the hospital, the doctors and nurses taught me how to manage my disease. I watched TV or attended lectures and learned some information about managing my disease. Communities often have a number of health activities, and you can also receive a small gift, so I like to participate.
Empowering Oneself to Confront the Disease Reliance on religion and faith is one form of self-encouragement among elderly women with chronic diseases, and this supports them during the adjustment process. The religious beliefs of several of the participants allowed them peace of mind and enabled them to confront the reality of disease and the resulting changes to their lifestyles, as one participant reported: I go to the temple to pray, and chant at home; it makes me feel calm. Church congregations gave me a lot of support and spiritual consolation.
Another woman related her involvement: I volunteer in religious groups to help ill people, like me.
Rebirth and Energy After undergoing the process of “encouraging oneself to escape the framework of disease,” the 12 participants were all able to create a new life for themselves through self-encouragement, the care provided by their children, and the appropriate application of external resources. The care and support of their families, diet and exercise planning, participation in social activities, and engagement in volunteer work allowed them to easily master their new lifestyles, as one participant recounted: I tried to change my life without troubling others. I tried to get back the days before I got sick; I can still cook for the family.
Another participant said the following: I take medicine on time, regular follow, adjust to life, maintain independence, and coexist with my chronic disease.
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DISCUSSION Grounded theory was used in this study to conduct interviews with 12 elderly women in the community to explore their life experiences in coexisting with chronic diseases. The results indicated that these elderly women, soon after being diagnosed with chronic diseases, encouraged themselves to escape the framework of disease. The women received support from family, external health resources, and religion when they discovered physical abnormalities and received a diagnosis. They searched for causes of the disease and learned how to manage the disease. They bravely confronted their chronic diseases and achieved a balance between family and self-growth. Finally, they successfully adapted to a new lifestyle and learned to coexist with chronic diseases. Consequently, they were able to help other people who also have chronic diseases. This study also demonstrated that elderly women speculated that the disease was genetic or caused by a poor diet or stress and, therefore, after receiving the diagnosis of a chronic disease, began to examine whether they had made mistakes in their lives, desiring to escape the framework of disease as quickly as possible. These findings are similar to Charmaz’s research in 2006. How people account for the cause of their illness shapes how they believe they must treat it and the measures and markers they invoke. Stress is a causal explanation that requires no elucidation; the shared meaning, reality, and validity of “stress” remains assumed (Charmaz, 2006). They seek various methods for managing these diseases, and they change or adjust their lifestyles to achieve control over the disease. Neill (2005), in exploring the lives and experiences of seven elderly women with chronic rheumatoid arthritis, determined that elderly women often change to gain self-control. The regimens for chronic illness may change a person’s activities and, thus, force reassessment. Ill people assume that they need to start regimens that break old habits (Charmaz, 2006). Shearer and colleagues (2009) investigated elderly women with chronic diseases in the community and stated that they believe that the dimensions of health are understanding their own potential, listening to the flow of energy in the body, and purposefully engaging in health-care-related decisions. According to the life experiences of women adjusting to chronic diseases, family support and external health resources were crucial factors. The results of this study indicate that the sources of health information included family and friends, neighbors, and health care workers. Community activities were also a valuable source of health information. Several community activities are also marketing activities sponsored by pharmaceutical companies that provide free incentives to entice elderly people to participate in these activities, during which the pharmaceutical companies disseminate health information and promote and sell related medications or health foods. Because the incentives are often daily necessities, the participants expressed
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a willingness to participate in such activities; however, the primary purpose of these activities is the promotion of certain products, and the accuracy of the disseminated health information and the effect such information has on the health maintenance of elderly women require further exploration. Future research on this topic could provide a more comprehensive understanding of the methods that elderly women use to maintain their health. The reliance on religion and faith that was observed in this study allowed the elderly women to coexist with chronic diseases through spiritual strength. Participating in religious activities after the women were diagnosed provided peace of mind and emotional calmness. Harvey (2006) studied 10 elderly African American women with chronic diseases and also determined that spirituality is essential to elderly women in self-managing and adjusting to chronic diseases. Shawler and Logsdon (2008) explored how elderly women adjust to chronic diseases and concluded that strong religious beliefs are a crucial factor in helping elderly women adjust to chronic diseases. At the early stages of a disease, elderly women are often shocked by the sudden changes in their physical condition. When first experiencing physical discomfort, they typically choose not to inform their family members and, instead, visit a doctor at a nearby medical center alone. When a disease is diagnosed, elderly women begin to consider the reasons for their illness by reviewing their family history and lifestyle (including diet and habits). Some elderly women consider whether their illnesses are caused by excessive stress. The elderly women interviewed for this study, however, were not fully aware of and did not fully understand the early signs of chronic diseases. In the future, elderly women should be educated regarding chronic diseases to enhance their sensitivity to the early signs of disease, comprehensively increase their knowledge of chronic diseases, and enable them to cope with diseases calmly upon diagnosis. The elderly women who participated in this study often empowered themselves and believed themselves to be capable of overcoming all of the necessary changes. Elderly women should receive individually targeted plans for disease control and health maintenance to enable them to participate in health care decisions at the onset of chronic diseases.
CONCLUSION AND RECOMMENDATIONS Although this study was limited because of its small number of participants and because it was draw from a single geographic location, the experiences shared illustrate the rich, diverse details of how elderly women live with chronic illness. After accepting their diseases, the elderly women who participated in this study often empowered themselves and believed themselves to be capable of overcoming all of the necessary changes. In addition, to avoid burdening others, they strove to modify their cognition and behaviors
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regarding daily life to manage their diseases. Regarding the active participation of these women in health care decisions, information on health maintenance was often received passively and provided by friends and family or by medical professionals. Several elderly women expressed that they learned through trial and error. In the future, elderly women should receive individually targeted plans for disease management and health maintenance to enable them to participate in health care decisions at the onset of chronic diseases. Future researchers should conduct long-term studies to exam alternative perspectives, including health status, financial and treatment resources, social support, and types of daily interaction and lifestyles for elderly women with chronic illnesses.
REFERENCES Charmaz, K. (1983). Loss of self: A fundamental form of suffering in the chronically ill. Sociology of Health and Illness, 5, 168–195. doi:10.1111/1467-9566.ep1049151 Charmaz, K. (1990). “Discovering” chronic illness: Using grounded theory. Social Science & Medicine, 30, 1061–1172. doi:10.1016/0277-9536(90)90256-R Charmaz, K. (2006). Measuring pursuits, marking self: Meaning construction in chronic illness. International Journal of Qualitative Studies on Health and WellBeing, 1, 27–37. doi:10.1080/17482620500534488 Davidson, P. M., Daly, J., Hancock, K., Chang, E., Moser, D., & Cockburn, J. (2003). Perceptions and experiences of heart disease: A literature review and identification of a research agenda in older women. European Journal of Cardiovascular Nursing, 2, 255–264. doi:10.1016/S1474-5151(03)00056-2 Davidson, P. M., DiGiacomo, M., & McGrath, S. J. (2011). The feminization of aging: How will this impact on health outcomes and services? Health Care for Women International, 32, 1031–1045. doi:10.1080/07399332.2011.610539 Denzin, N. K., & Lincoln, Y. S. (Eds.). (2005). The Sage handbook of qualitative research. Thousand Oaks, CA: Sage. Frye, V., Putnam, S., & O’Campo, P. (2008). Whither gender in urban health? Health & Place, 14, 616–622. doi:10.1016/j.healthplace.2007.09.006 Glaser, B. G. (1978). Theoretical sensitivity: Advances in the methodology of grounded theory. Mill Valley, CA: Sociology Press. Glaser, B. G., & Strauss, A. L. (1967). The discovery of grounded theory: Strategies for qualitative research. New York, NY: Aldine De Gruyter. Graneheim, U. H., & Lundman, B. (2004). Quantitative content analysis in nursing research: Concepts, procedures and measures to achieve trustworthiness. Nurse Education Today, 24, 105–112. doi:10.1016/j.nedt.2003.10.001 Harvey, I. S. (2006). Self-management of a chronic illness: An exploratory study on the role of spirituality among older African American women. Journal of Women & Aging, 18(3), 75–88. doi:10.1300/J074v18n03_06 Neill, J. (2005). Health as expanding consciousness: Seven women living with multiple sclerosis and rheumatoid arthritis. Nursing Science Quarterly, 18, 334–343. doi:10.1177/0894318405280366
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Newman, M. A. (1997). Evolution of the theory of health as expanding consciousness. Nursing Science Quarterly, 10, 22–25. Raymond, S. U., Greenberg, H. M., & Leeder, S. R. (2005). Beyond reproduction: Women’s health in today’s developing world. International Journal of Epidemiology, 34, 1144–1148. doi:10.1093/ije/dyi121 Shawler, C., & Logsdon, D. (2008). Living vigilant lives with chronic illness: Stories from older low-income minority women. Health Care for Women International, 29, 76–84. doi:10.1080/07399330701723863 Shearer, N., & Fleury, J. (2006). Social support promoting health in older women. Journal of Women & Aging, 18(4), 3–17. doi:10.1300/J074v18n03_06 Shearer, N. B., Fleury, J. D., & Reed, P. G. (2009). The rhythm of health in older women with chronic illness. Research and Theory for Nursing Practice, 23, 148–160. doi:10.1891/1541-6577.23.2.148 Strauss, A. L., & Corbin, J. M. (1990). Basics of qualitative research: Grounded theory procedures and techniques. Newbury Park, CA: Sage.
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Experiences of Coexisting With Chronic Illnesses Among Elderly Women in Communities YU-MEI CHANG Nursing Department, Oriental Institute of Technology; and Nursing Department and Graduate School, National Taipei University of Nursing and Health Sciences, Taipei City, Taiwan
LEE-ING TSAO Nursing Department, National Taipei University of Nursing and Health Sciences, Taipei City, Taiwan
MIN-HIS HUANG Nursing Department, Far Eastern Memorial Hospital, Taipei City, Taiwan
Based on the increasing numbers of women in the aging population, the health of women will become critical in the future. Our purpose in this study was to analyze the experiences of elderly women with chronic illness. Twelve elderly Taiwanese women participated in in-depth interviews. “Using my own power out of the disease shackle” was the core category referring to elderly women who coexist with chronic illnesses. Elderly women should be provided with individually targeted plans for disease management and health maintenance to enable them to participate in health care decisions at the onset of chronic diseases. The increasing number of women in the aging population requires a reframing of how people view the planning and delivery of health care services to reflect a gendered approach (Frye, Putnam, & O’Campo, 2008). As women age, they frequently experience multiple chronic and complex health conditions, such as heart disease and arthritis, which affect their health and well-being (Davidson et al., 2003). People with chronic illness would experience loss of self, which is suffering from living a restrictive life, Received 26 January 2014; accepted 5 June 2014. Address correspondence to Lee-Ing Tsao, Nursing Department, National Taipei University of Nursing and Health Sciences, No. 365, Ming-Te Road, Peitou District, Taipei City 112, Taiwan. E-mail: [email protected] or [email protected] 1339
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existing in social isolation, experiencing discredited definitions of self, and becoming a burden (Charmaz, 1983). The health of women will become a critical concern in the near future because of their increased longevity and morbidity and decreased access to health care, as compared with men (Davidson, DiGiacomo, & McGrath, 2011). Currently, the average life expectancy for women is at least 6 years longer than for men in Taiwan. It is common for elderly women to live with their chronic diseases silently in the community. While there is Western research on the subject, there are few studies of aging women in Taiwan on this topic. Neill (2005) focused on the meaning of health among women living with chronic illnesses. This research elucidated the meaning of health in seven women aged 44 to 78 years, diagnosed with multiple sclerosis or rheumatoid arthritis from Newman’s theoretical view of health. In the Neill sample, women progressed through stages consistent with Newman’s (1997) turning points of movement, as well as clear choice points marked by intentional change before they found new ways of living. New ways of living included the following: finding simple pleasures, being positive, gaining self-control, and achieving self-differentiation (Neill, 2005). Charmaz (2006) conducted 165 qualitative interviews with chronically ill people and elucidated how people with chronic illnesses cope by measuring their pursuits as indicators of their health and adopting such measures as markers of who they are. The findings indicated that measuring pursuits includes scrutinizing involvements, accounting for illness, and setting priorities. The participants interpreted and constructed markers from their measures and preserved self through fitness. Harvey (2006) investigated the role of spirituality in the self-management of chronic illness. A sample of 10 African American women was used to collect information from semistructured interviews. Data were analyzed for common themes through narrative analysis. Four themes emerged from the linkage of spirituality and self-management. Shawler and Logsdon (2008) observed how elderly women coped with hip fracture. Thirteen minority women aged 63 to 88 years with chronic illness participated in the study. The findings indicated four themes: (a) positive self-talk, (b) strong spiritual faith, (c) refusal to dwell on deficits, and (d) sense of survival. Three of the five concepts in the Evolutionary Empowerment–Strength model were supported, which demonstrated initial usefulness of the model for varied populations. Shearer, Fleury, and Reed (2009) used focus group interviews with 51 women, aged 55 to 93 years, to obtain a deeper understanding of the meaning of health from the perspective of elderly women. A Rogerian perspective of human health provided a broad conceptual lens for the study. Three themes explicating the meanings of health emerged from the data: realizing the potential for purpose, listening to energy flow, and purposefully participating in health-related changes. The three themes represented the manner
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in which the women contended with the paradoxes posed by their chronic illnesses (Shearer et al., 2009). To distinguish areas for future research, Davidson and colleagues (2011) conducted an integrative review to identify the concerns and challenges that aging women face. They observed that many elderly women continue to face inequities related to health and are often invisible in the discourse on aging policy. This study argued for a greater focus on the unique needs of women, a gendered approach to policy and intervention development, and promotion of the lifelong health of women. Policymakers, health care workers, and researchers must consider the perspective of gender as well as age when implementing and evaluating effective interventions (Davidson et al., 2011). Researchers have provided an initial understanding of the dimensions and meanings of health among elderly adults in general, and specifically among elderly women with chronic illnesses. The next steps must include continuing to study elderly women, as well as examining the empirical findings from this and previous studies from a theoretical perspective; therefore, research aimed at developing empirically based theory of health for elderly women with chronic illnesses is necessary, based on themes of health generated from participant views (Shearer & Fleury, 2006). Although there is infinitely more women’s health research about reproductive and maternal health (Raymond, Greenberg, & Leeder, 2005), researchers have been studying the issues of elderly women for at least 30 years. Because research on elderly women with chronic diseases is rare in Taiwan, it was there that we conducted an in-depth qualitative study to explore and elucidate the subjective experiences of coexisting with chronic diseases among elderly women. We hope that the study results can be used as a future reference for health care planning.
METHODS Design Grounded theory research methods were used to establish a descriptive theory of the subjective life experiences of elderly Taiwanese women and how they coexist with chronic diseases. The descriptive theory included how these women view chronic diseases, how they treat their chronic diseases, how they use support systems to manage chronic diseases, and how they pursue improved health. Grounded theory is a qualitative method for developing a substantive theory that involves using systematic data collection and data analysis through the research process. One key strategy of grounded theory is to collect data from the participant’s perspective. Through mutual interactions between researchers and participants, meaningful and contextualized data
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are collected and analyzed (Strauss & Corbin, 1990), and new insights are thereby revealed. Grounded theory analyses can then provide physicians with alternative understandings of patients’ beliefs and actions than those readily available in clinical settings (Charmaz, 1990). The methods and techniques of the grounded theory approach guide the researcher to ask questions about how and why people interact with society and how this interaction influences the meaning in their lives.
Participants To ensure a smooth recruitment process, a community health nursing department, home care nurses, and primary care physicians were asked to collaborate in this study. To build trust between the participants and the researcher, the researcher accompanied home care nurses on home visits prior to recruitment for the study. When an appropriate case for this study was identified during the home care service based on understanding patient care needs and providing appropriate care, the home care nurse assisted the researchers in recruiting and obtaining consent from the prospective participant. Primary care physicians were asked to screen appropriate potential participants during clinic hours before the researcher contacted the prospective participants to ascertain their willingness to participate in the study. Inclusion criteria included women who (a) were 65 years of age or older; (b) had one or more chronic diseases; (c) were able to communicate in Mandarin Chinese or Taiwanese; (d) had normal hearing or used a hearing aid; and (e) had normal cognitive functions, were able to answer questions, and had signed a consent form.
Ethical Considerations This study was evaluated and approved by the Institutional Review Board of Far Eastern Memorial Hospital. Elderly women were asked if they would be willing to participate in the study and share their experiences related to coexisting with chronic diseases. Initial contact with the participants was made after home care nurses or primary care physicians introduced them to the researchers to establish a relationship. After receiving an initial oral agreement, the researchers explained the purpose of the study and obtained signed consent forms. An appointment was made with the participants to conduct individual interviews. In consideration of patient privacy and convenience, the participants determined where the interviews were to be conducted. The participants were assured that all information would be anonymous and were allowed to withdraw from the study at any time. Of the 12 participants, two were interviewed at the hospital during their revisit and 10 were interviewed
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in their homes. In addition, the participants were given a gift valued at U.S. $7.00. Some of the participants refused to accept the gifts, however, because they viewed their participation as a type of contribution providing their life experiences for the study.
Data Collection and Analysis The researchers conducted the interviews in person. We considered participants’ physical energy; therefore, the interview time did not surpass 60 minutes. Prior to the interview, a phone call was made to the participant to summarize what would be discussed during the interview. The interview questions included the following: • • • • • •
How did you discover that you have a chronic disease? What do you normally do to take care of yourself? What steps do you take to understand how to manage your disease? How do you manage your disease? In your everyday life, how do you take care of yourself? What resources do you use to help you understand your disease and the treatment of your disease? • In the course of your disease, what problems have you encountered? How did you resolve them? • Who is in your network of contacts, and how do the people in your network affect the treatment and management of your disease? • How do you cope living with your disease? The recorded interviews were transcribed and analyzed by the researchers and an expert in nursing research. Each sentence and paragraph was studied and analyzed to conceptualize these interviews. Each concept was coded, and similar concepts were grouped into categories. When additional data were available, the categories were clarified or modified until the core categories were developed. The process of data analysis entailed continual collection, comparison, and evaluation. When there was a difference of opinion, this process was repeated for clarification. The interviews were conducted in Taiwanese or Mandarin Chinese and translated into English after the themes were identified by the researchers. They were verified by a bilingual individual who was proficient in both Chinese and English and experienced in academic translation. The analysis began by openly encoding the first interview. The second interview was then compared with the first. All data were processed using the same method. The next step was to capture the substance of the data by breaking it down into identifiable substantive codes that illustrated the influence of caring situations. The various codes and interviews were compared
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with each other to strengthen their identification. The codes were labeled with origin words from the data (Glaser, 1978; Glaser & Strauss, 1967).
Trustworthiness The researcher used four criteria to evaluate the rigor of the study to ensure the trustworthiness of the research process: (a) credibility, (b) transferability, (c) dependability, and (d) confirmability (Denzin & Lincoln, 2005; Graneheim & Lundman, 2004). To establish credibility, the interviews were conducted in Taiwanese or Mandarin Chinese. Open-ended and in-depth interviews were used in which the participants described subjective experiences of coexisting with chronic illnesses. During the process of data analysis, the researchers were able to continue discussions with the senior nursing expert and to make necessary revisions. After the themes were identified, they were translated into English. Regarding transferability, despite diverse backgrounds, all interviewees recounted personal stories with great sincerity and enthusiasm. During data collection and analysis, the researcher and the senior nursing expert constantly compared, recoded, confirmed, and reconfirmed to establish dependability. Finally, confirmability was attained using audiotapes and summary notes that were written on the day of the interview.
RESULTS In this study, 12 elderly women with chronic illnesses, living in communities, participated in in-depth interviews. The interview period was 2011–2012. The average age was 73 years (range, 66–80 years). The demographic and clinical characteristics of the participants are summarized in Table 1. TABLE 1 Older Women’s Demographics Age (years)
Education
78 74 67 72 66
Elementary school Elementary school Junior high school Junior high school Junior high school
72 76 68 80 76 69
Elementary school Junior college Junior college Elementary school Elementary school Junior high school
74
Elementary school
Type of disease Diabetes Diabetes Diabetes Diabetes Hypertension, chronic arthritis Chronic arthritis Diabetes, hypertension Hypertension Chronic arthritis Diabetes, hypertension Diabetes, hypertension, stroke Diabetes, hypertension
Years spent living with the disease 18 15 10 10 10 15 17 16 20 12 7 28
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The interviews were conducted in Taiwanese or Mandarin Chinese and translated into English after the themes were identified by the researchers. Six main categories were observed to be the most distinctive aspects of the experience of coexisting with chronic illnesses among the participants in this study. The core categories identified and described were abstracted to a theoretical level and are summarized in Figure 1. “Using my own power out of the disease shackle” was the core category for presenting the elderly women who coexist with chronic illness in their own ways. “Perceiving warning discomfort” was identified as the antecedent condition. The participants then began the process of “using my own power out of the disease shackle.” The elderly women reported five interactive categories: “self-reflection on disease signs and symptoms,” “judicious self-care of the disease,” “receiving support from family,” “using outside resources,” and “empowering oneself to confront the disease.” All of the categories were interrelated and influenced one another, and therefore they appear somewhat redundant. Hence, they were separated with the aim of generating a core category. After the phase of “empowering oneself to confront the disease,” the elderly women reached the outcome of “rebirth and energy.”
Using My Own Power Out of the Disease Shackle All 12 elderly women with chronic diseases expressed that they underwent a self-encouragement process, and with the help of friends or family and the use of health resources, they were able to coexist peacefully with their diseases. They were no longer anxious, and they were able to actively view their diseases, and the changes in their lives caused by these diseases, in a positive light. One participant recounted her feelings: To accept it, not to be afraid, to think of it as a part of life. I don’t regard myself as the patient, I’m strong and stand up to face this chronic disease, to find what I wanted.
Another participant stated her belief: Although chronic diseases make my life inconvenient compared with ordinary people, I am willing to spend twice as much time to complete the same things.
Perceiving Warning Discomfort All of the participants discovered their diseases after experiencing various physical symptoms including excessive thirst or hunger. Eating or drinking
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FIGURE 1 The process of “using my own power out of disease shackle” among elderly women with chronic illness in Taiwan.
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too much and excessive urinary output are three common symptoms of diabetes, and dizziness is a symptom of the early stages of hypertension. Changes in mobility often occur in patients with osteoarthritis. These symptoms are commonly recognized among the public; therefore, when these women began to exhibit these symptoms, they were sufficiently aware, or their families were sufficiently aware, of the implications and needed to seek medical attention immediately and receive an accurate diagnosis, as one participant reported: Symptoms occurred very quickly, very suddenly, and I thought that I must be sick. I went to a nearby clinic to see a doctor, and the results looked very serious.
Another participant told her story: I went to the hospital for a blood check, and the doctors told me that I had diabetes; it came quickly.
Self-Reflection on Disease Signs and Symptoms The participants expressed that they were unable to accept their chronic diseases immediately after diagnosis. They speculated that the disease was genetic or was caused by a poor diet and, therefore, began to examine whether they had made mistakes in their lives. Later, possibly because relatives were also diagnosed with chronic diseases, they felt relieved and began to accept their diagnoses, as one participant stated: At first I suspected that my illness was caused by genetics, but I did not know whether my parents also had the same disease. I began to reflect on my daily habits, really unacceptable.
Another participant expressed her opinion: I think getting sick causes too much pressure.
Judicious Self-Care of the Disease Three participants revealed that after suspecting that they were ill and then receiving a diagnosis, the management of their disease became the primary mission in their lives. The resultant change in lifestyle was the most troubling aspect of their chronic diseases. To achieve the goal of controlling blood sugar, these participants monitored the amount of each type of food, tested blood sugar levels every time they ate, formulated a method of determining the effect of various foods on blood sugar, and provided their own food
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as often as possible. In addition, the participants were also wary of blood pressure and blood values. One participant stated her experience: Physicians prescribed medication for me, and I started to amend my eating habits. When my blood sugar level is not normal, I adjust my diet; normally, I’ll eat a little more.
Another woman said that she self-monitors: If I feel uncomfortable, I check my blood pressure immediately. If it’s relatively high, I become nervous.
Receiving Support From Family The participants expressed that the care demonstrated by their children during the course of their diseases was helpful in adjusting to the diseases and in establishing a new lifestyle for themselves. The ways in which the children cared for their mothers included sharing their knowledge of health; learning healthy habits alongside their mothers, such as controlling their weight or consuming certain types of food; assisting in making medical identification cards; and preparing snacks to prevent low blood sugar when their mothers were away from home. One participant recounted her family’s participation: My family told me not to eat certain foods, and family dinners also fit my diet.
Another participant recounted her experience: My family helped me collect data about diabetes, and also helped me prepare sweets to carry in my bag.
Using Outside Resources In the process of adjusting to chronic diseases, the participants efficiently used external health resources. These health resources were provided by physicians, nurses, and diabetes educators, and by television, newspapers, magazines, and other media. In addition, these women acquired health resources by participating in community activities and support groups, or by sharing information with support groups. The participants were encouraged to escape the limitations of being chronically ill and achieve a balance between life and self-growth.
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One participant stated the following: I learned from relatives and friends who have chronic diseases. Neighbors taught me some management methods, and I was very touched.
Another participant talked about her experience: After referral to the hospital, the doctors and nurses taught me how to manage my disease. I watched TV or attended lectures and learned some information about managing my disease. Communities often have a number of health activities, and you can also receive a small gift, so I like to participate.
Empowering Oneself to Confront the Disease Reliance on religion and faith is one form of self-encouragement among elderly women with chronic diseases, and this supports them during the adjustment process. The religious beliefs of several of the participants allowed them peace of mind and enabled them to confront the reality of disease and the resulting changes to their lifestyles, as one participant reported: I go to the temple to pray, and chant at home; it makes me feel calm. Church congregations gave me a lot of support and spiritual consolation.
Another woman related her involvement: I volunteer in religious groups to help ill people, like me.
Rebirth and Energy After undergoing the process of “encouraging oneself to escape the framework of disease,” the 12 participants were all able to create a new life for themselves through self-encouragement, the care provided by their children, and the appropriate application of external resources. The care and support of their families, diet and exercise planning, participation in social activities, and engagement in volunteer work allowed them to easily master their new lifestyles, as one participant recounted: I tried to change my life without troubling others. I tried to get back the days before I got sick; I can still cook for the family.
Another participant said the following: I take medicine on time, regular follow, adjust to life, maintain independence, and coexist with my chronic disease.
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DISCUSSION Grounded theory was used in this study to conduct interviews with 12 elderly women in the community to explore their life experiences in coexisting with chronic diseases. The results indicated that these elderly women, soon after being diagnosed with chronic diseases, encouraged themselves to escape the framework of disease. The women received support from family, external health resources, and religion when they discovered physical abnormalities and received a diagnosis. They searched for causes of the disease and learned how to manage the disease. They bravely confronted their chronic diseases and achieved a balance between family and self-growth. Finally, they successfully adapted to a new lifestyle and learned to coexist with chronic diseases. Consequently, they were able to help other people who also have chronic diseases. This study also demonstrated that elderly women speculated that the disease was genetic or caused by a poor diet or stress and, therefore, after receiving the diagnosis of a chronic disease, began to examine whether they had made mistakes in their lives, desiring to escape the framework of disease as quickly as possible. These findings are similar to Charmaz’s research in 2006. How people account for the cause of their illness shapes how they believe they must treat it and the measures and markers they invoke. Stress is a causal explanation that requires no elucidation; the shared meaning, reality, and validity of “stress” remains assumed (Charmaz, 2006). They seek various methods for managing these diseases, and they change or adjust their lifestyles to achieve control over the disease. Neill (2005), in exploring the lives and experiences of seven elderly women with chronic rheumatoid arthritis, determined that elderly women often change to gain self-control. The regimens for chronic illness may change a person’s activities and, thus, force reassessment. Ill people assume that they need to start regimens that break old habits (Charmaz, 2006). Shearer and colleagues (2009) investigated elderly women with chronic diseases in the community and stated that they believe that the dimensions of health are understanding their own potential, listening to the flow of energy in the body, and purposefully engaging in health-care-related decisions. According to the life experiences of women adjusting to chronic diseases, family support and external health resources were crucial factors. The results of this study indicate that the sources of health information included family and friends, neighbors, and health care workers. Community activities were also a valuable source of health information. Several community activities are also marketing activities sponsored by pharmaceutical companies that provide free incentives to entice elderly people to participate in these activities, during which the pharmaceutical companies disseminate health information and promote and sell related medications or health foods. Because the incentives are often daily necessities, the participants expressed
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a willingness to participate in such activities; however, the primary purpose of these activities is the promotion of certain products, and the accuracy of the disseminated health information and the effect such information has on the health maintenance of elderly women require further exploration. Future research on this topic could provide a more comprehensive understanding of the methods that elderly women use to maintain their health. The reliance on religion and faith that was observed in this study allowed the elderly women to coexist with chronic diseases through spiritual strength. Participating in religious activities after the women were diagnosed provided peace of mind and emotional calmness. Harvey (2006) studied 10 elderly African American women with chronic diseases and also determined that spirituality is essential to elderly women in self-managing and adjusting to chronic diseases. Shawler and Logsdon (2008) explored how elderly women adjust to chronic diseases and concluded that strong religious beliefs are a crucial factor in helping elderly women adjust to chronic diseases. At the early stages of a disease, elderly women are often shocked by the sudden changes in their physical condition. When first experiencing physical discomfort, they typically choose not to inform their family members and, instead, visit a doctor at a nearby medical center alone. When a disease is diagnosed, elderly women begin to consider the reasons for their illness by reviewing their family history and lifestyle (including diet and habits). Some elderly women consider whether their illnesses are caused by excessive stress. The elderly women interviewed for this study, however, were not fully aware of and did not fully understand the early signs of chronic diseases. In the future, elderly women should be educated regarding chronic diseases to enhance their sensitivity to the early signs of disease, comprehensively increase their knowledge of chronic diseases, and enable them to cope with diseases calmly upon diagnosis. The elderly women who participated in this study often empowered themselves and believed themselves to be capable of overcoming all of the necessary changes. Elderly women should receive individually targeted plans for disease control and health maintenance to enable them to participate in health care decisions at the onset of chronic diseases.
CONCLUSION AND RECOMMENDATIONS Although this study was limited because of its small number of participants and because it was draw from a single geographic location, the experiences shared illustrate the rich, diverse details of how elderly women live with chronic illness. After accepting their diseases, the elderly women who participated in this study often empowered themselves and believed themselves to be capable of overcoming all of the necessary changes. In addition, to avoid burdening others, they strove to modify their cognition and behaviors
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regarding daily life to manage their diseases. Regarding the active participation of these women in health care decisions, information on health maintenance was often received passively and provided by friends and family or by medical professionals. Several elderly women expressed that they learned through trial and error. In the future, elderly women should receive individually targeted plans for disease management and health maintenance to enable them to participate in health care decisions at the onset of chronic diseases. Future researchers should conduct long-term studies to exam alternative perspectives, including health status, financial and treatment resources, social support, and types of daily interaction and lifestyles for elderly women with chronic illnesses.
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