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Inner Strength Among HIV-Infected Women: Nurses Can Make a Difference
JANAC Vol. 13, No. 3, May/June 2002 Haile et al. / Inner Strength
Inner Strength Among HIV-Infected Women: Nurses Can Make a Difference Brenda L. Haile, RN, DrPH, ACRN Peggy A. Landrum, RN, PhD Joseph A. Kotarba, PhD Debra Trimble, RNC, MS, WHCNP, FNP-C, ACRN The purpose of this qualitative study was twofold. First, the authors examined the phenomenon of inner strength as a resource that women infected with HIV use to cope with and manage their difficult lives. Second, the authors sought the women’s views on the potential impact health care workers, specifically nurses, can have on the activation of inner strength. This study was phenomenologically informed and qualitatively structured. The goal was to construct an analytical understanding of inner strength as it is perceived, defined, experienced, and activated by women infected with HIV. Data were collected by means of 19 conversational, biographical interviews. These interviews were conducted with a stratified (by ethnicity and social class) sample of women infected with HIV. The data were elicited in terms of respondents’ stories of living with HIV. The women listed a number of definitions for inner strength such as “the ability to fight” and “the motivation to go on and do better.” The women recommended that nurses working with them be sensitive to the following patient concerns: validation, reality, sensitivity, and autonomy. The concept of inner strength can be of great scholarly and clinical value if it is defined as follows: Inner strength refers to the different ways women with serious illnesses experience and talk about the deepest, existential resources available to and used by them to manage severe risks to self-integrity. The recommendations, although somewhat critical of nurses, are plausible because they incorporate nurses’ traditional approaches to caring for patients.
The proportion of women with AIDS has increased steadily since the beginning of the epidemic. Between 1990 and 1994, the rate of increase in incidence of AIDS in women was 89% in contrast to the 29% increase reported in men. By the end of 2000, a total of 168,258 female adolescents and adult women in the United States had been reported to have AIDS or HIV infection (U.S. Department of Health and Human Services, 2000). This upward trend of the HIV/AIDS epidemic in women in the United States is occurring especially in women of color, women who are partners of injecting drug users, younger women, and women outside major population centers such as those in the rural southeastern United States (Fowler, Melnick, & Mathieson, 1997). The psychosocial impact of HIV/AIDS on women is formidable. Women who are HIV infected live with a chronic illness frequently characterized by vague symptoms, rapidly changing medical management or philosophies, and frequent social isolation (Adair & Burian, 1997). Those women who are also mothers face the challenge of coping with their own illness while caring for their children. Many HIV-infected women are long-term survivors, having had the Brenda L. Haile, RN, DrPH, ACRN, is an assistant professor of nursing at Texas Woman’s University. Peggy A. Landrum, RN, PhD, is an associate clinical professor of nursing at Texas Woman’s University. Joseph A. Kotarba, PhD, is a professor of sociology at the University of Houston. Debra Trimble, RNC, MS, WHCNP, FNP-C, ACRN, is an instructor at Texas Woman’s University.
Key words: HIV/AIDS, women, inner strength JOURNAL OF THE ASSOCIATION OF NURSES IN AIDS CARE, Vol. 13, No. 3, May/June 2002, 74-80 Copyright © 2002 Association of Nurses in AIDS Care
Haile et al. / Inner Strength
infection for many years while successfully meeting multiple challenges and surviving in spite of overwhelming obstacles and uncertainties. Medical management of HIV/AIDS has become increasingly complicated since the introduction of protease inhibitors and combination therapy in 1996. Although patients in general are living longer and healthier lives, many have had to contend with severe medication side effects, complicated dosing schedules, and medication resistance. The need for women with HIV/AIDS to deal successfully with these challenges in addition to everyday stressors presents opportunities for nurses to facilitate strategies for success. Effective health care for these women must include more than teaching about medication side effects and focusing on lack of adherence to prescribed treatments. Nurses must focus intensely on the psychosocial factors that support survival and those factors that nurses can influence (Strawn, 1995). With an increase in chronicity, the need for greater attention to improved quality of life has become a priority in the care of women with HIV/AIDS. The concept of inner strength may help us understand the resources women need to survive HIV. Inner strength, a phenomenon described by various disciplines in the care of individuals experiencing challenging life situations, has been identified as a factor of psychological health, spiritual well-being, and a dynamic component of holistic health (Dingley, 1997). Previous research on inner strength in women has targeted serious illnesses such as breast cancer and heart disease (Dingley, 1997; Roux & Keyser, 1994). The Women, Inner Strength, HIV/AIDS (WISH) Study examined the role inner strength plays in helping HIV-infected women survive or even flourish. In-depth interviews with these women highlighted two themes: the role inner strength plays in helping them survive and the ways in which health care professionals can help activate inner strength. A detailed discussion of the first theme can be found in Kotarba et al. (in press). The focus of the present article is on women’s recommendations on how to improve the delivery of health care while maintaining and facilitating inner strength.
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Methods We collected the data for this study by means of 19 in-depth conversational, biographical interviews. The respondents were women living with HIV/AIDS for at least 1 year and residing in the Houston, Texas, metropolitan area. We assembled our sample through the theoretical sampling strategy suggested by grounded theory (Strauss & Corbin, 1990). We began interviewing women who were known to the researchers through HIV education endeavors and later added women who were symptomatic from HIV and had dual diagnoses (i.e., HIV/AIDS and chemical dependency) and who were not seeking medical care for their illness. In all cases, we interviewed the women at times and locations convenient to them. Each respondent was given $50 for her time and assistance with the study. The interviews were tape-recorded and averaged 60 minutes in length. All interviews adhered to the guidelines for the protection of human subjects issued by the University of Texas Health Sciences Center, Houston. The sample had the following characteristics. Ages ranged from 19 to 54 years, and the number of years infected ranged from 1 to 12. Four of the respondents admitted to having a diagnosis of AIDS. Five of the women were not taking any antiretroviral medication at the time of the interview, although three had taken medications previously while pregnant. The ethnicity of the sample was as follows: African American, 60% (n = 11), African, 5% (n = 1), Anglo American, 25% (n = 5), Latina, 5% (n = 1), and multiethnic, 5% (n = 1). Forty-seven percent of the women in the sample were married, 27% were separated or divorced, and 27% defined themselves as single. Thirty-two percent had no children, and the remaining had between one and three children. Sixty-eight percent of the respondents had private insurance or Medicaid, and 32% were truly indigent and received medical care from governmentfunded clinics. This study was structured as a team project (Douglas, 1976). All four members of the team contributed to all aspects and phases of the study, including design, interviewing, analysis, and the construction of reports of findings. The narrative style was used in describing the women’s stories. Using this method in qualitative research allows the subjects to relate
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their experiences while the researcher acts largely as a trained and empathetic listener. The respondent’s lived experience, in all its vague, energetic, contradictory, and celebratory manifestations, becomes the content of narrative analysis. This narrative style of qualitative research has a long and productive history in social and behavioral science. In more recent times, research nurses have been particularly committed to the narrative style because it accommodates a traditional nursing concern for the patient/respondent’s input into the healing process (Morse, 1994). A major objective within the narrative style is the full integration of the respondent into the research endeavor (Kotarba, 1997). Simply stated, the researcher’s job is to help respondents tell their own stories. We began our investigation with a working definition of inner strength as it applies to women with HIV. Inner strength is an innate and universal potential among women that can be developed for use in crises such as catastrophic, life-threatening illness. Furthermore, inner strength is necessary for successful coping with catastrophic illnesses such as breast cancer and HIV/AIDS.
The Concept of Inner Strength in the Health Care Literature There are only three published studies that explicitly address the topic of inner strength in women, although there are several articles concerned with related concepts. 1 Rose (1990) described inner strength as the holistic, health-focused phenomenon of psychological health in women. She used a phenomenological approach to examine inner strength in nine healthy women. Through unstructured interviews, she identified nine essential themes of inner strength that represented psychological health. These themes included concepts of centering (or focusing and balancing), accepting your true self, and recognizing the complexity of life. Rose’s (1990) model is useful because it focuses attention on the complex, multifaceted dimensions of psychological health. Her model is of limited value to the present discussion, however, because its themes are derived from the experiences of healthy women who are not coping with life-threatening illness.
Roux and Keyser (1994) investigated inner strength in 18 women with breast cancer and found that their experiences of inner strength were manifested in the following four major themes: coming to know, strength within of she who knows, connection of she who knows, and movement of she who knows. These themes denoted stages through which the women passed following a diagnosis of breast cancer: facing and accepting the diagnosis, recognizing a strong spirit, connecting with the important people and loves of one’s life, and, finally, finding a passage to inner strength used for moving, harmonizing, and facilitating a desired change. This research can be critiqued, however, for its implicit assumption that all women with breast cancer travel through the same stages of coping with cancer in the same order. The question remains: How situational is the experience of inner strength? Dingley (1997) used grounded theory to examine inner strength in women with coronary artery disease. She described five interrelated constructs in the process of growth in inner strength in women recovering with cardiac disease. The first was allowing for nurturance, which involved receiving and accepting psychosocial support. She called the second dwelling in a different place involving a process of focusing self outside of illness. The third, balancing the search, was representative of balancing and assimilating new understanding, meaning, and direction in their lives. The fourth construct, healing in the present, represented the process of creating a new, normal self in the present. Finally, connecting with the future occurred when women extended themselves to accept support from others. Dingley suggested that these five constructs could be identified in women with HIV/AIDS.
Results Women’s Definitions of Inner Strength The women with HIV/AIDS told their stories and included their own definitions of inner strength. All women interviewed were able to describe an entity, feeling, or experience they equated with our portrayal of inner strength. Some women knew they had always had inner strength and that this strength had increased
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and matured with the diagnosis of HIV/AIDS. Others were able to identify and use their strength as a specific, definite result of the HIV/AIDS diagnosis. The following is a list of representative definitions the women shared with us: Allowing something to occur and not letting it break you down. Being comfortable with yourself and knowing who you are and what you stand for. It lets me overcome HIV without HIV overcoming me. It is motivation, a reason to go on and to do better. It is endurance, when you have to be strong. There are two ways to deal with things: either let it take you over or you fight. It is the ability to fight. It is knowing your decision is right and being able “to get on with it.” It is going from “victim” to “survivor” to “thriver.” Some women’s personal descriptions of inner strength were related to an internal force or a characteristic of self. Some described being resourceful, stubborn, or willful even in childhood. Other women felt their strength as a transcendental force within themselves. Other women described connecting with their inner strength and identified it as motivation to go on in the face of adversity, having a mental attitude the opposite of giving up, and being comfortable with who you are. Definitions that contrasted self-reliance, motivation, and self-will were usually related to reliance on God. Several of the women described themselves as “being blessed” and being part of a greater plan. This plan, “God’s will,” provided strength to get through all adversity. Several women who had endured tremendous brutality at an early age seemed to be completely supported by their faith in God. Some believed that they were being kept here for a larger purpose and would not die until this had been completed. Many of the women displayed a sense of peace and purpose during the interviews. Only one respondent was unable or unwilling to describe a personal experience of inner strength. Instead, this 28-year-old prostitute with an addiction to crack cocaine accounted for her survival with the
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concept of “good luck,” a member’s concept that seemed to function for her in a similar way. We summarized our respondents’ accounts with the following refined, conceptual definition of inner strength: Inner strength refers to the different ways women with serious illnesses experience and talk about the deepest, existential resources available to and used by them to manage, in a holistic sense, risks to self-integrity.
Recommendations by the WISH Women When asking the respondents about the sources of their inner strength, we were surprised to learn that health care workers in general and nurses in particular were not readily mentioned. Our surprise was based on the assumption that inner strength is obviously within the purview of nursing philosophy and work. The women viewed nurses as competent providers of technically appropriate health care. However, respondents generally felt that nurses were unwilling or unable to interact with them on a more personal level. We then asked the women to suggest ways nurses can connect to help activate inner strength. The following are the four most common recommendations. Validation: Don’t Put Down My Feelings In their attempts to comfort and encourage clients, health care workers sometimes inadvertently say things that are perceived by clients as insensitive or insincere. This dilemma is especially noticeable in HIV care. Communication between nurses and clients can be very problematic due to the multiplicity of cultures, social classes, ethnicity, life experiences, and languages that are present in the clinic or office. Instead of being a comfort, these words of intended encouragement actually make women with HIV/AIDS feel worse. A 30-year-old Anglo American AIDS educator told us: “People always tried to comfort me by telling me nobody knows when they will die, we could get hit by a bus on the way home. This did not help, but invalidated my feelings and made me angry.” According to her, this seems like a way of
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saying: “There is nothing special about you” when, in reality, her fear is not of buses but of dying from AIDS, a very different and real issue for her. She goes on to say, “Don’t tell me you know how I feel. That is completely impossible!” For her, those words are hollow and insincere. Sometimes the hardest thing to do is simply to listen to a client in distress. For those in a helping profession such as nursing, the urge is to advise, to guide, and to instruct. This is not always what the client wants or needs. Nurses must realize that there are times when they should simply listen quietly and be supportive in a nondirective manner. A simple statement such as “That must be very frightening for you” can be a powerful acknowledgment of understanding. Reality: Don’t Be Afraid of Me People with HIV are keenly aware that some fear them and, consequently, discriminate against them. While understanding and accepting the need for routine standard precautions while providing care, drawing blood, or other invasive procedures, clients sometimes feel humiliated and even insulted when someone takes unnecessary precautions when coming in contact with them. A 34-year-old African American woman with end-stage AIDS told us, “The only time I got my feelings hurt was when a nurse offered to help me bathe but then wouldn’t touch me. I think she thought my HIV would rub off on her.” Another 30-year-old Anglo woman said, “I won’t go back to a health care worker who won’t shake my hand or touch me.” Nurses must have a solid understanding of the mechanics of HIV transmission in order to provide good care and protect themselves at the same time. Through knowledge comes comfort and safety. In the early days of the HIV epidemic, fear was widespread and understandable because little was known about the mechanisms of transmission. That is not the case today, however. There is much information about the transmission of HIV and ways to minimize what is already a low risk of transmission. Nurses must remain sensitive to how their responses to clients may be interpreted. In the above story about the bath, possibly the nurse was simply busy and prepared the bath water as she would for any other client. However, the
interpretation by the client was that the nurse was afraid to touch her, not that she was too busy to assist. Sensitivity: Don’t Ask Me How I Got It Most respondents noted that in their initial clinical assessments, the nurses asked them how they were exposed to and infected by HIV. Several of the study participants expressed strong feelings that this question was an intrusion on their privacy and simply reinforced their guilt and shame. One woman told us that when someone asks her that question now, she counters with “Why do you need to know?” She feels that people are asking to determine whether she should be classified as “an innocent victim” or someone who “asked for it.” Others felt that there is simply a lot of curiosity about sexual and drug-using behavior among health care workers that is unrelated to their actual work of providing health care. A 36-year-old Latina AIDS educator gave this bit of advice: “All health care workers should be taught not to inflict shame and guilt. You should ask your clients, ‘Since you found out you have HIV, what has hurt you the most?’ and then you will know what not to do.” This recommendation may put some nurses in an awkward position. Many patient documentation forms include a description of how the patient was infected, and it is frequently the responsibility of the nurse to fill out these forms. Nurses should explain the forms to clients and make it clear that the nurses are not personally curious about this information. Nurses should also recognize and respect clients’ rights to refuse to answer these types of questions. Nurses could also delay asking these questions until there is a rapport between nurse and patient. If the information in question is already in the client’s record, there is no need to keep asking about it. Autonomy: Respect My Knowledge and My Right to Choose Several women complained about physicians and nurses who pretended to have all the answers. A 50-year-old woman complained that many of her doctors acted as if they had all the knowledge. This particular woman was extremely knowledgeable and
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well-read about HIV, yet her physicians persisted in treating her as though they were the final and ultimate source. She told us that she frequently educated them on issues, new options, and treatments. Physicians who were nonsupportive of popular complementary and alternative medicine used by people with HIV tended to dismiss her, treating her with what she perceived to be disdain and condescension. She described the need to be considered a collaborator in her treatment decisions and to be treated with respect by her physicians and caregivers, not an unreasonable request. The nurse can act as a patient advocate in discussions with the physician. Frequently, the choices clients make are not the ones we would prefer, but clearly clients have the final decision on all matters. Many opt for various alternative approaches to fight their illness and maximize their health status. These options include homeopathy, acupuncture, massage therapy, aromatherapy, vitamins, and supplements, as well as many other less well known methods. An emerging field supports the importance of nutrition in treating HIV, not only in strengthening the immune system but also in maximizing the use of antiretroviral medications. It must be understood that many alternative products on the market today do not fall under the jurisdiction of the Federal Drug Administration and are sold as supplements. While many of these substances are innocuous, others have serious potential for interacting with HIV medications, elevating blood pressure, and causing a multitude of other serious side effects. Nurses are perhaps in the best position to discuss alternative and complementary therapies with their patients given nursing’s traditional long-standing dedication to and inclination toward holistic patient care. It is critical for the health care team to know what alternative methods are available and being used by our clients. If clients are met with judgmental and demeaning attitudes about their treatment choices, they are unlikely to share information with us with regard to what they are doing. Education is important, especially in view of the potential for health fraud perpetrated against those with HIV, but always with the acknowledgment that the client is the ultimate decision maker. There is one other aspect of holistic health directly relevant to the nurturing of inner strength. The positive
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effects of holistic health are not only physical but also spiritual. As noted above, our women placed great importance on religious and spiritual sources of inner strength. The mastery of holistic health care so unique to nursing can provide women with yet another spiritual source of inner strength.
Summary There is no other disease in modern times that carries as much social stigma and negative social implications as HIV/AIDS. Almost two decades after the discovery of AIDS, women (and men) are still faced with rejection, social isolation, and moral judgment. Our qualitative study of inner strength among HIVinfected women gave 19 respondents an opportunity to describe their lives and their perceptions of inner strength. We also gave them the opportunity to discuss the sources of and threats to that strength. For some, once activated, inner strength seems unshakable, coming from a source beyond the mundane aspects of daily life. For others, it appeared more fragile, not fully developed, and subject to waxing and waning as influenced by their perceptions of others’ attitudes of dismissal or disapproval. The recommendations from the WISH women speak volumes: “Don’t make me feel guilty,” “Don’t judge me,” “Don’t fear me.” A major insight we gained from this study is that women infected with HIV/AIDS are still quite vulnerable to the moral evaluation of nurses working with them. This vulnerability exists in spite of the great advances made in the rational/scientific/medical treatment of HIV/AIDS. Nurses’ heroic and increasingly successful efforts to extend the lives of their patients are still not sufficient for the profession of nursing. Nurses should remind themselves that they have the skills to address the deepest existential needs of their patients in order to help make those extended lives meaningful.
Note 1. Carson (1993) described hardiness as an attitude, personality characteristic, and psychological construct that serves as a resource for resisting the negative effects of stress. In her quantitative study of 100 subjects with HIV/AIDS. Coward (1995) based her self-transcendence
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work on theories of Frankl (1969). She described transcendence as the ability to move beyond one’s immediate predicament to a psychic or psychological space where hope resides. Hunter and Chandler (1999) described resilience as an internal resource that allows one to be able to overcome adversity through the use of developed internal and external protective mechanisms. Other researchers have proposed that resilient individuals successfully meet the challenge of trauma and that resilience may be fostered through intervention.
References Adair, M. L., & Burian, P. (1997). Evaluation of women. In R. Muma, B. Lyons, M. Borucki, & R. Pollard (Eds.), HIV manual for health care professionals (pp. 133-150). Stamford, CT: Appleton & Lange. Carson, V. B. (1993). Prayer, meditation, exercise, and special diets: Behaviors of the hardy person with HIV/AIDS. Journal of the Association of Nurses in AIDS Care, 4(3), 18-28. Coward, D. (1995). The lived experience of self-transcendence in women with AIDS. Journal of Obstetric, Gynecologic, and Neonatal Nursing, 24, 314-318. Dingley, C. E. (1997). Inner strength in women recovering from coronary artery disease. Unpublished master’s thesis, Midwestern State University. Douglas, J. D. (1976). Investigative social research. Beverly Hills, CA: Sage.
Fowler, M. G., Melnick, S. L., & Mathieson, B. J. (1997). Women and HIV: Epidemiology and global overview. Obstetrics and Gynecology Clinics, 24, 705-729. Frankl, V. (1969). The will to meaning: Foundations and applications of logotherapy. New York: New American Library. Hunter, A. J., & Chandler, G. E. (1999). Adolescent resilience. Image: Journal of Nursing Scholarship, 31, 243-247. Kotarba, J. A. (1997). Reading the male experience of rock music: Four songs about women. Cultural Studies, 2, 265-277. Kotarba, J. A., Haile, B., Landrum, P., & Trimble, D. (in press). Inner strength and the existential self among HIV+ women: Integrating nursing and sociological concepts. Health. Morse, M. (Ed.). (1994). Critical issues in qualitative research methods. Thousand Oaks, CA: Sage. Rose, C. F. (1990). Psychological health of women: A phenomenological study of women’s inner strength. Advances in Nursing Science, 12(2), 56-70. Roux, G. M., & Keyser, P. K. (1994). Inner strength in women with breast cancer. Illness, Crises and Loss, 4(2), 1-11. Strauss, A., & Corbin, J. (1990). Basics of qualitative research: Grounded theory procedures and techniques. New York: Sage. Strawn, J. M. (1995). Long-term survivors: Thriving with human immunodeficiency virus/acquired immunodeficiency syndrome. Holistic Nursing Practice, 10(1), 29-35. U.S. Department of Health and Human Services. (2000). HIV/AIDS surveillance report 2000: Year-end edition (Vol. 12, No. 2). Atlanta, GA: Author.
Inner Strength Among HIV-Infected Women: Nurses Can Make a Difference Brenda L. Haile, RN, DrPH, ACRN Peggy A. Landrum, RN, PhD Joseph A. Kotarba, PhD Debra Trimble, RNC, MS, WHCNP, FNP-C, ACRN The purpose of this qualitative study was twofold. First, the authors examined the phenomenon of inner strength as a resource that women infected with HIV use to cope with and manage their difficult lives. Second, the authors sought the women’s views on the potential impact health care workers, specifically nurses, can have on the activation of inner strength. This study was phenomenologically informed and qualitatively structured. The goal was to construct an analytical understanding of inner strength as it is perceived, defined, experienced, and activated by women infected with HIV. Data were collected by means of 19 conversational, biographical interviews. These interviews were conducted with a stratified (by ethnicity and social class) sample of women infected with HIV. The data were elicited in terms of respondents’ stories of living with HIV. The women listed a number of definitions for inner strength such as “the ability to fight” and “the motivation to go on and do better.” The women recommended that nurses working with them be sensitive to the following patient concerns: validation, reality, sensitivity, and autonomy. The concept of inner strength can be of great scholarly and clinical value if it is defined as follows: Inner strength refers to the different ways women with serious illnesses experience and talk about the deepest, existential resources available to and used by them to manage severe risks to self-integrity. The recommendations, although somewhat critical of nurses, are plausible because they incorporate nurses’ traditional approaches to caring for patients.
The proportion of women with AIDS has increased steadily since the beginning of the epidemic. Between 1990 and 1994, the rate of increase in incidence of AIDS in women was 89% in contrast to the 29% increase reported in men. By the end of 2000, a total of 168,258 female adolescents and adult women in the United States had been reported to have AIDS or HIV infection (U.S. Department of Health and Human Services, 2000). This upward trend of the HIV/AIDS epidemic in women in the United States is occurring especially in women of color, women who are partners of injecting drug users, younger women, and women outside major population centers such as those in the rural southeastern United States (Fowler, Melnick, & Mathieson, 1997). The psychosocial impact of HIV/AIDS on women is formidable. Women who are HIV infected live with a chronic illness frequently characterized by vague symptoms, rapidly changing medical management or philosophies, and frequent social isolation (Adair & Burian, 1997). Those women who are also mothers face the challenge of coping with their own illness while caring for their children. Many HIV-infected women are long-term survivors, having had the Brenda L. Haile, RN, DrPH, ACRN, is an assistant professor of nursing at Texas Woman’s University. Peggy A. Landrum, RN, PhD, is an associate clinical professor of nursing at Texas Woman’s University. Joseph A. Kotarba, PhD, is a professor of sociology at the University of Houston. Debra Trimble, RNC, MS, WHCNP, FNP-C, ACRN, is an instructor at Texas Woman’s University.
Key words: HIV/AIDS, women, inner strength JOURNAL OF THE ASSOCIATION OF NURSES IN AIDS CARE, Vol. 13, No. 3, May/June 2002, 74-80 Copyright © 2002 Association of Nurses in AIDS Care
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infection for many years while successfully meeting multiple challenges and surviving in spite of overwhelming obstacles and uncertainties. Medical management of HIV/AIDS has become increasingly complicated since the introduction of protease inhibitors and combination therapy in 1996. Although patients in general are living longer and healthier lives, many have had to contend with severe medication side effects, complicated dosing schedules, and medication resistance. The need for women with HIV/AIDS to deal successfully with these challenges in addition to everyday stressors presents opportunities for nurses to facilitate strategies for success. Effective health care for these women must include more than teaching about medication side effects and focusing on lack of adherence to prescribed treatments. Nurses must focus intensely on the psychosocial factors that support survival and those factors that nurses can influence (Strawn, 1995). With an increase in chronicity, the need for greater attention to improved quality of life has become a priority in the care of women with HIV/AIDS. The concept of inner strength may help us understand the resources women need to survive HIV. Inner strength, a phenomenon described by various disciplines in the care of individuals experiencing challenging life situations, has been identified as a factor of psychological health, spiritual well-being, and a dynamic component of holistic health (Dingley, 1997). Previous research on inner strength in women has targeted serious illnesses such as breast cancer and heart disease (Dingley, 1997; Roux & Keyser, 1994). The Women, Inner Strength, HIV/AIDS (WISH) Study examined the role inner strength plays in helping HIV-infected women survive or even flourish. In-depth interviews with these women highlighted two themes: the role inner strength plays in helping them survive and the ways in which health care professionals can help activate inner strength. A detailed discussion of the first theme can be found in Kotarba et al. (in press). The focus of the present article is on women’s recommendations on how to improve the delivery of health care while maintaining and facilitating inner strength.
75
Methods We collected the data for this study by means of 19 in-depth conversational, biographical interviews. The respondents were women living with HIV/AIDS for at least 1 year and residing in the Houston, Texas, metropolitan area. We assembled our sample through the theoretical sampling strategy suggested by grounded theory (Strauss & Corbin, 1990). We began interviewing women who were known to the researchers through HIV education endeavors and later added women who were symptomatic from HIV and had dual diagnoses (i.e., HIV/AIDS and chemical dependency) and who were not seeking medical care for their illness. In all cases, we interviewed the women at times and locations convenient to them. Each respondent was given $50 for her time and assistance with the study. The interviews were tape-recorded and averaged 60 minutes in length. All interviews adhered to the guidelines for the protection of human subjects issued by the University of Texas Health Sciences Center, Houston. The sample had the following characteristics. Ages ranged from 19 to 54 years, and the number of years infected ranged from 1 to 12. Four of the respondents admitted to having a diagnosis of AIDS. Five of the women were not taking any antiretroviral medication at the time of the interview, although three had taken medications previously while pregnant. The ethnicity of the sample was as follows: African American, 60% (n = 11), African, 5% (n = 1), Anglo American, 25% (n = 5), Latina, 5% (n = 1), and multiethnic, 5% (n = 1). Forty-seven percent of the women in the sample were married, 27% were separated or divorced, and 27% defined themselves as single. Thirty-two percent had no children, and the remaining had between one and three children. Sixty-eight percent of the respondents had private insurance or Medicaid, and 32% were truly indigent and received medical care from governmentfunded clinics. This study was structured as a team project (Douglas, 1976). All four members of the team contributed to all aspects and phases of the study, including design, interviewing, analysis, and the construction of reports of findings. The narrative style was used in describing the women’s stories. Using this method in qualitative research allows the subjects to relate
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their experiences while the researcher acts largely as a trained and empathetic listener. The respondent’s lived experience, in all its vague, energetic, contradictory, and celebratory manifestations, becomes the content of narrative analysis. This narrative style of qualitative research has a long and productive history in social and behavioral science. In more recent times, research nurses have been particularly committed to the narrative style because it accommodates a traditional nursing concern for the patient/respondent’s input into the healing process (Morse, 1994). A major objective within the narrative style is the full integration of the respondent into the research endeavor (Kotarba, 1997). Simply stated, the researcher’s job is to help respondents tell their own stories. We began our investigation with a working definition of inner strength as it applies to women with HIV. Inner strength is an innate and universal potential among women that can be developed for use in crises such as catastrophic, life-threatening illness. Furthermore, inner strength is necessary for successful coping with catastrophic illnesses such as breast cancer and HIV/AIDS.
The Concept of Inner Strength in the Health Care Literature There are only three published studies that explicitly address the topic of inner strength in women, although there are several articles concerned with related concepts. 1 Rose (1990) described inner strength as the holistic, health-focused phenomenon of psychological health in women. She used a phenomenological approach to examine inner strength in nine healthy women. Through unstructured interviews, she identified nine essential themes of inner strength that represented psychological health. These themes included concepts of centering (or focusing and balancing), accepting your true self, and recognizing the complexity of life. Rose’s (1990) model is useful because it focuses attention on the complex, multifaceted dimensions of psychological health. Her model is of limited value to the present discussion, however, because its themes are derived from the experiences of healthy women who are not coping with life-threatening illness.
Roux and Keyser (1994) investigated inner strength in 18 women with breast cancer and found that their experiences of inner strength were manifested in the following four major themes: coming to know, strength within of she who knows, connection of she who knows, and movement of she who knows. These themes denoted stages through which the women passed following a diagnosis of breast cancer: facing and accepting the diagnosis, recognizing a strong spirit, connecting with the important people and loves of one’s life, and, finally, finding a passage to inner strength used for moving, harmonizing, and facilitating a desired change. This research can be critiqued, however, for its implicit assumption that all women with breast cancer travel through the same stages of coping with cancer in the same order. The question remains: How situational is the experience of inner strength? Dingley (1997) used grounded theory to examine inner strength in women with coronary artery disease. She described five interrelated constructs in the process of growth in inner strength in women recovering with cardiac disease. The first was allowing for nurturance, which involved receiving and accepting psychosocial support. She called the second dwelling in a different place involving a process of focusing self outside of illness. The third, balancing the search, was representative of balancing and assimilating new understanding, meaning, and direction in their lives. The fourth construct, healing in the present, represented the process of creating a new, normal self in the present. Finally, connecting with the future occurred when women extended themselves to accept support from others. Dingley suggested that these five constructs could be identified in women with HIV/AIDS.
Results Women’s Definitions of Inner Strength The women with HIV/AIDS told their stories and included their own definitions of inner strength. All women interviewed were able to describe an entity, feeling, or experience they equated with our portrayal of inner strength. Some women knew they had always had inner strength and that this strength had increased
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and matured with the diagnosis of HIV/AIDS. Others were able to identify and use their strength as a specific, definite result of the HIV/AIDS diagnosis. The following is a list of representative definitions the women shared with us: Allowing something to occur and not letting it break you down. Being comfortable with yourself and knowing who you are and what you stand for. It lets me overcome HIV without HIV overcoming me. It is motivation, a reason to go on and to do better. It is endurance, when you have to be strong. There are two ways to deal with things: either let it take you over or you fight. It is the ability to fight. It is knowing your decision is right and being able “to get on with it.” It is going from “victim” to “survivor” to “thriver.” Some women’s personal descriptions of inner strength were related to an internal force or a characteristic of self. Some described being resourceful, stubborn, or willful even in childhood. Other women felt their strength as a transcendental force within themselves. Other women described connecting with their inner strength and identified it as motivation to go on in the face of adversity, having a mental attitude the opposite of giving up, and being comfortable with who you are. Definitions that contrasted self-reliance, motivation, and self-will were usually related to reliance on God. Several of the women described themselves as “being blessed” and being part of a greater plan. This plan, “God’s will,” provided strength to get through all adversity. Several women who had endured tremendous brutality at an early age seemed to be completely supported by their faith in God. Some believed that they were being kept here for a larger purpose and would not die until this had been completed. Many of the women displayed a sense of peace and purpose during the interviews. Only one respondent was unable or unwilling to describe a personal experience of inner strength. Instead, this 28-year-old prostitute with an addiction to crack cocaine accounted for her survival with the
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concept of “good luck,” a member’s concept that seemed to function for her in a similar way. We summarized our respondents’ accounts with the following refined, conceptual definition of inner strength: Inner strength refers to the different ways women with serious illnesses experience and talk about the deepest, existential resources available to and used by them to manage, in a holistic sense, risks to self-integrity.
Recommendations by the WISH Women When asking the respondents about the sources of their inner strength, we were surprised to learn that health care workers in general and nurses in particular were not readily mentioned. Our surprise was based on the assumption that inner strength is obviously within the purview of nursing philosophy and work. The women viewed nurses as competent providers of technically appropriate health care. However, respondents generally felt that nurses were unwilling or unable to interact with them on a more personal level. We then asked the women to suggest ways nurses can connect to help activate inner strength. The following are the four most common recommendations. Validation: Don’t Put Down My Feelings In their attempts to comfort and encourage clients, health care workers sometimes inadvertently say things that are perceived by clients as insensitive or insincere. This dilemma is especially noticeable in HIV care. Communication between nurses and clients can be very problematic due to the multiplicity of cultures, social classes, ethnicity, life experiences, and languages that are present in the clinic or office. Instead of being a comfort, these words of intended encouragement actually make women with HIV/AIDS feel worse. A 30-year-old Anglo American AIDS educator told us: “People always tried to comfort me by telling me nobody knows when they will die, we could get hit by a bus on the way home. This did not help, but invalidated my feelings and made me angry.” According to her, this seems like a way of
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saying: “There is nothing special about you” when, in reality, her fear is not of buses but of dying from AIDS, a very different and real issue for her. She goes on to say, “Don’t tell me you know how I feel. That is completely impossible!” For her, those words are hollow and insincere. Sometimes the hardest thing to do is simply to listen to a client in distress. For those in a helping profession such as nursing, the urge is to advise, to guide, and to instruct. This is not always what the client wants or needs. Nurses must realize that there are times when they should simply listen quietly and be supportive in a nondirective manner. A simple statement such as “That must be very frightening for you” can be a powerful acknowledgment of understanding. Reality: Don’t Be Afraid of Me People with HIV are keenly aware that some fear them and, consequently, discriminate against them. While understanding and accepting the need for routine standard precautions while providing care, drawing blood, or other invasive procedures, clients sometimes feel humiliated and even insulted when someone takes unnecessary precautions when coming in contact with them. A 34-year-old African American woman with end-stage AIDS told us, “The only time I got my feelings hurt was when a nurse offered to help me bathe but then wouldn’t touch me. I think she thought my HIV would rub off on her.” Another 30-year-old Anglo woman said, “I won’t go back to a health care worker who won’t shake my hand or touch me.” Nurses must have a solid understanding of the mechanics of HIV transmission in order to provide good care and protect themselves at the same time. Through knowledge comes comfort and safety. In the early days of the HIV epidemic, fear was widespread and understandable because little was known about the mechanisms of transmission. That is not the case today, however. There is much information about the transmission of HIV and ways to minimize what is already a low risk of transmission. Nurses must remain sensitive to how their responses to clients may be interpreted. In the above story about the bath, possibly the nurse was simply busy and prepared the bath water as she would for any other client. However, the
interpretation by the client was that the nurse was afraid to touch her, not that she was too busy to assist. Sensitivity: Don’t Ask Me How I Got It Most respondents noted that in their initial clinical assessments, the nurses asked them how they were exposed to and infected by HIV. Several of the study participants expressed strong feelings that this question was an intrusion on their privacy and simply reinforced their guilt and shame. One woman told us that when someone asks her that question now, she counters with “Why do you need to know?” She feels that people are asking to determine whether she should be classified as “an innocent victim” or someone who “asked for it.” Others felt that there is simply a lot of curiosity about sexual and drug-using behavior among health care workers that is unrelated to their actual work of providing health care. A 36-year-old Latina AIDS educator gave this bit of advice: “All health care workers should be taught not to inflict shame and guilt. You should ask your clients, ‘Since you found out you have HIV, what has hurt you the most?’ and then you will know what not to do.” This recommendation may put some nurses in an awkward position. Many patient documentation forms include a description of how the patient was infected, and it is frequently the responsibility of the nurse to fill out these forms. Nurses should explain the forms to clients and make it clear that the nurses are not personally curious about this information. Nurses should also recognize and respect clients’ rights to refuse to answer these types of questions. Nurses could also delay asking these questions until there is a rapport between nurse and patient. If the information in question is already in the client’s record, there is no need to keep asking about it. Autonomy: Respect My Knowledge and My Right to Choose Several women complained about physicians and nurses who pretended to have all the answers. A 50-year-old woman complained that many of her doctors acted as if they had all the knowledge. This particular woman was extremely knowledgeable and
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well-read about HIV, yet her physicians persisted in treating her as though they were the final and ultimate source. She told us that she frequently educated them on issues, new options, and treatments. Physicians who were nonsupportive of popular complementary and alternative medicine used by people with HIV tended to dismiss her, treating her with what she perceived to be disdain and condescension. She described the need to be considered a collaborator in her treatment decisions and to be treated with respect by her physicians and caregivers, not an unreasonable request. The nurse can act as a patient advocate in discussions with the physician. Frequently, the choices clients make are not the ones we would prefer, but clearly clients have the final decision on all matters. Many opt for various alternative approaches to fight their illness and maximize their health status. These options include homeopathy, acupuncture, massage therapy, aromatherapy, vitamins, and supplements, as well as many other less well known methods. An emerging field supports the importance of nutrition in treating HIV, not only in strengthening the immune system but also in maximizing the use of antiretroviral medications. It must be understood that many alternative products on the market today do not fall under the jurisdiction of the Federal Drug Administration and are sold as supplements. While many of these substances are innocuous, others have serious potential for interacting with HIV medications, elevating blood pressure, and causing a multitude of other serious side effects. Nurses are perhaps in the best position to discuss alternative and complementary therapies with their patients given nursing’s traditional long-standing dedication to and inclination toward holistic patient care. It is critical for the health care team to know what alternative methods are available and being used by our clients. If clients are met with judgmental and demeaning attitudes about their treatment choices, they are unlikely to share information with us with regard to what they are doing. Education is important, especially in view of the potential for health fraud perpetrated against those with HIV, but always with the acknowledgment that the client is the ultimate decision maker. There is one other aspect of holistic health directly relevant to the nurturing of inner strength. The positive
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effects of holistic health are not only physical but also spiritual. As noted above, our women placed great importance on religious and spiritual sources of inner strength. The mastery of holistic health care so unique to nursing can provide women with yet another spiritual source of inner strength.
Summary There is no other disease in modern times that carries as much social stigma and negative social implications as HIV/AIDS. Almost two decades after the discovery of AIDS, women (and men) are still faced with rejection, social isolation, and moral judgment. Our qualitative study of inner strength among HIVinfected women gave 19 respondents an opportunity to describe their lives and their perceptions of inner strength. We also gave them the opportunity to discuss the sources of and threats to that strength. For some, once activated, inner strength seems unshakable, coming from a source beyond the mundane aspects of daily life. For others, it appeared more fragile, not fully developed, and subject to waxing and waning as influenced by their perceptions of others’ attitudes of dismissal or disapproval. The recommendations from the WISH women speak volumes: “Don’t make me feel guilty,” “Don’t judge me,” “Don’t fear me.” A major insight we gained from this study is that women infected with HIV/AIDS are still quite vulnerable to the moral evaluation of nurses working with them. This vulnerability exists in spite of the great advances made in the rational/scientific/medical treatment of HIV/AIDS. Nurses’ heroic and increasingly successful efforts to extend the lives of their patients are still not sufficient for the profession of nursing. Nurses should remind themselves that they have the skills to address the deepest existential needs of their patients in order to help make those extended lives meaningful.
Note 1. Carson (1993) described hardiness as an attitude, personality characteristic, and psychological construct that serves as a resource for resisting the negative effects of stress. In her quantitative study of 100 subjects with HIV/AIDS. Coward (1995) based her self-transcendence
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work on theories of Frankl (1969). She described transcendence as the ability to move beyond one’s immediate predicament to a psychic or psychological space where hope resides. Hunter and Chandler (1999) described resilience as an internal resource that allows one to be able to overcome adversity through the use of developed internal and external protective mechanisms. Other researchers have proposed that resilient individuals successfully meet the challenge of trauma and that resilience may be fostered through intervention.
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