Applied Science, Faculty of
Nursing, School of
DSpace
UBCV
Pickthall, Linda E.
Master of Science in Nursing - MSN
University of British Columbia
This study describes hospital nurses' experiences caring for patients with AIDS. A modified version of Speigelberg's phenomenological approach was used which explored the nurses' experiences from their perspective. A total of eight nurses who had cared for patients with AIDS were interviewed. The findings indicated that caring for these patients is stressful. The researcher identified sources of stress as both internal and external. Internal stressors included: (1) fear of contracting AIDS; (2) homophobia; and (3) caring for dying AIDS patients. The two external stressors were patient variables and societal views. Lack of perceived emotional support from nursing administration further increased the stress. These nurses believed this form of support was essential. In order to cope with these experiences, the nurses utilized their usual coping strategies. Common ones were being physically active, relaxing, and talking with others. Different coping strategies were used to deal with the specific stressors. These were identified by the researcher as: (1) rationalization; (2) knowledge-seeking; (3) withdrawal; and (4) involvement. This study's findings emphasize the need for support for all nurses caring for patients with AIDS. Implications for nursing education, practice, and research were identified.
PHENOMENOLOGICAL STUDY OF NURSES' EXPERIENCES CARING FOR PATIENTS WITH ACQUIRED IMMUNODEFICIENCY SYNDROME (AIDS) BY LINDA E . PICKTHALL S.N. , The University Of Br i t i sh Columbia, 1984 A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF SCIENCE IN NURSING in THE FACULTY OF GRADUATE STUDIES (The School of Nursing) We accept this thesis as conforming to the required standard THE UNIVERSITY OF BRITISH COLUMBIA August 1990 © Linda E . Pickthal l In presenting this thesis in partial fulfilment of the requirements for an advanced degree at the University of British Columbia, I agree that the Library shall make it freely available for reference and study. I further agree that permission for extensive copying of this thesis for scholarly purposes may be granted by the head of my department or by his or her representatives. It is understood that copying or publication of this thesis for financial gain shall not be allowed without my written permission. Department of A/tlXS/Aj & The University of British Columbia Vancouver, Canada DE-6 (2/88) i i ABSTRACT This study describes hospital nurses' experiences caring for patients with AIDS. A modified version of Speigelberg's phenomenological approach was used which explored the nurses' experiences from their perspective. A total of eight nurses who had cared for patients with AIDS were interviewed. The findings indicated that caring for these patients is s tressful . The researcher identified sources of stress as both internal and external. Internal stressors included: (1) fear of contracting AIDS; (2) homophobia; and (3) caring for dying AIDS patients. The two external stressors were patient variables and societal views. Lack of perceived emotional support from nursing administration further increased the stress. These nurses believed this form of support was essential . In order to cope with these experiences, the nurses ut i l i zed their usual coping strategies. Common ones were being physically active, relaxing, and talking with others. Different coping strategies were used to deal with the specific stressors. These were identified by the researcher as: (1) rationalization; i i i (2) knowledge-seeking; (3) withdrawal; and (4) involvement. This study's findings emphasize the need for support for a l l nurses caring for patients with AIDS. Implications for nursing education, practice, and research were identif ied. Table of Contents iv l Page Abstract i i Table of Contents iv Lis t of Figures v i i i Acknowledgements ix CHAPTER 1: INTRODUCTION Introduction 1 Background to the Problem 2 Methodological Approach 8 Definition of Terms 9 Assumptions 9 Limitations 9 CHAPTER 2: REVIEW OF SELECTED LITERATURE Introduction . . . . 10 Issues Related to Health Care Professionals Caring for Patients with AIDS 12 Introduction 12 Fear of Contagion 12 Homophobia 15 Terminal Illness 16 Summary 17 V Page CHAPTER 3: METHODOLOGY Introduct ion 18 Phenomenological Method 18 H i s t o r i c a l Foundations of Phenomenology.. 19 Phenomenological Sampling Procedure 20 V a l i d i t y and R e l i a b i l i t y 22 Se lec t ion of Informants 24 C r i t e r i a for Se lect ion 24 Se lect ion Procedure . . .24 C h a r a c t e r i s t i c s of Informants 25 E t h i c a l C o n s i d e r a t i o n s . . . . 26 Data C o l l e c t i o n 27 Data Analys is 28 Spiegelberg 's Phenomenological Method. 28 Invest igat ing P a r t i c u l a r Phenomena... . 29 Invest igat ing General Essences 30 Apprehending E s s e n t i a l Relat ionships Among Essences 30 Watching Modes of Appearing 31 Explor ing the Cons t i tu t ion of the Phenomenon in Consciousness 31 Suspending B e l i e f in Existence 31 Interpret ing Concealed Meanings 31 Content Analys is 32 vi Page CHAPTER 4: PRESENTATION AND DISCUSSION OF THE FINDINGS Introduction. 34 Content Analysis 36 Nurses' Experiences As Stressful 36 Stress 43 Stress in Nursing 46 Stresses of caring for patients with AIDS..47 Sources of Stress 48 Internal Stressors . . . 48 Fear of contracting AIDS .48 Homophobia . 60 Caring for dying AIDS patients 70 External Stressors . . 83 Patient variables 83 Societal views 91 Lack of Emotional Support 101 Coping Strategies I l l Usual Coping Strateg ies . . . . 113 Physical Act iv i t ies 113 Relaxation Act iv i t ies .114 Talking with Others. .115 Coping Strategies Related To Internal and External Stressors 116 Rationalization .116 Knowledge-Seek ing 120 Withdrawal 122 Involvement. 126 Summary . 129 Page CHAPTER 5: SUMMARY, CONCLUSIONS, AND IMPLICATIONS FOR NURSING Summary 137 Conclusions 138 Implications for Nursing. 140 Nursing Education 140 Nursing Practice 141 Nursing Research. 143 Bibliography 146 Appendix A: Informant Information 162 Appendix B: Subject Consent Form 163 Appendix C: Sample Questions 164 V l l l Lis t of Figures Page Figure- 1 Framework for Nurses' Experiences Caring for Patients with AIDS. 35 ix ACKNOWLEDGEMENTS I would l ike to acknowledge and thank a l l the nurses who participated in this study for sharing their personal experiences with me. I would also l ike to acknowledge the members of my thesis committee, Dr. Marilyn Willman and Ms. Donelda E l l i s , for their continued support and interest. And a very special thanks to my family for their patience and understanding. 1 CHAPTER 1 INTRODUCTION S i n c e a c q u i r e d immunodef ic iency syndrome (AIDS) was f i r s t i d e n t i f i e d i n 1981, few p e o p l e , i f any , have not heard about t h i s d e a d l y d i s e a s e . I t i s a c o n s t a n t t o p i c i n the media . AIDS i s now c o n s i d e r e d to be the w o r l d ' s most c r u c i a l h e a l t h problem and the numbers of people i n f e c t e d are expected to c o n t i n u e to i n c r e a s e a t a l a r m i n g r a t e s (Morgan & C u r r a n , 1986) . T h i s i n c r e a s e , combined w i t h the t e r m i n a l na ture of the d i s e a s e , p r e s e n t s a c h a l l e n g e to which a l l h e a l t h c a r e p r o f e s s i o n a l s must r e s p o n d . For n u r s e s , p a r t i c u l a r l y h o s p i t a l n u r s e s , AIDS i s an even g r e a t e r c h a l l e n g e . H o s p i t a l nurses must be knowledgeable about AIDS and be c u r r e n t w i t h the l a t e s t r e s e a r c h . They must c a r e f o r and comfort p a t i e n t s w i t h AIDS who can have m u l t i p l e and severe p h y s i c a l prob lems , and who face g r e a t s u f f e r i n g and e a r l y d e a t h . They a l s o need to p r o v i d e s u p p o r t f o r and h e l p to educate p a t i e n t s ' f a m i l y members and f r i e n d s . In a d d i t i o n to p r o v i d i n g t h i s c a r e , h o s p i t a l nurses must a t the same t ime cope w i t h t h e i r own f e a r s and a n x i e t i e s . 2 There is l i t t l e research which describes hospital nurses' experiences caring for patients with AIDS. Specific concerns related to AIDS patients, such as fear of contagion, homophobia, and caring for the terminally i l l , have been well documented in the l i terature (Barnard, 1987; Baumgartner, 1985; Blumenfield, Smith, Milazzo, Seropian, & Wormser, 1987; Bolding & Goldstone, 1985; Christ & Weiner, 1985; Douglas, Kalman, & Kalman, 1985; Geis & Ful ler , 1986; Reed, Wise, & Mann, 1984; Rubinow, 1984; Simmons-Ailing, 1984). Caring for patients with AIDS is a monumental challenge for hospital nurses and i t is also undeniably stressful . However, l i t t l e is known about what i t is l ike to care for these patients; therefore, this study was designed to explore the experiences of hospital nurses who have cared for patients with AIDS. Background to the Problem In order to fu l ly understand the nurses' experiences i t is important to f i r s t know about the nature of the disease. Thus, the epidemiology of AIDS w i l l be described. AIDS was f i r s t identified in homosexual men, which resulted in its being labelled the "gay disease" 3 (Albert, 1986; Baker, 1986; Fettner & Check, 1984). Homosexual/bisexual men are the highest risk group and they have captured most of the media's attention. In Canada, the high risk groups are: (1) homosexual/ bisexual men (72%); (2) intravenous drug users (0.3%); (3) hemophiliacs (0.1%); (4) blood transfusion recipients before 1983 (1.0%); (5) people from endemic areas (like Haiti and Zaire) (12.9%); (6) sexual partners of one of the above (2.3%); (7) neonates born to AIDS mothers (6%); and (8) others (3%) (Goldstone, 1985a, p. 13). The 3% figure attributed to the group of "others" is frightening because i t is not known why these people are affected. Canadian s tat i s t ics reveal there were 110 people with AIDS as of February 5, 1990 for whom no risk group could be identified (Canada Diseases Weekly Report [CDWR], February 5, 1990, p. 1). Increasingly, new cases have been identified in heterosexual partners of people in the high risk groups. In New York since 1985, 30% of the AIDS cases were diagnosed in heterosexual men and women (Krim, 1985, p. 6). Recent s tat i s t ics for Canada indicate a total of 64 women and 43 men in this group as of the beginning of 1990 (CDWR, February 5, 1990, p. 3). At this same time, there were 51 children with AIDS, most 4 having become infected prenatally. In July 1986 there were 638 people diagnosed with AIDS in Canada (CDWR, July 26, 1986) and by December 1988 the number had increased to 2,209 (CDWR, December 17, 1988). The number of reported AIDS cases is currently doubling every 21 months. The total number of cases in Canada is now 3,458 with 2,122 deaths (CDWR, February 5, 1990, p. 1). The number of people who are infected with the AIDS virus is not known but estimates have ranged from 50,000 to 75,000, of whom 10% wi l l develop AIDS within two years (Krim, 1985, p. 5) . AIDS has a mortality rate of close to 100% two years after diagnosis (CDWR, July 6, 1985; Fauci & Lane, 1984; Krim, 1985; Williams, 1986). It is characterized by suppression of the immune system causing the person to become susceptible to opportunistic infections and rare tumors. Opportunistic infections are caused by microorganisms which take advantage of the immune system's inabi l i ty to destroy them and therefore they multiply causing disease. Some common opportunistic infections are: Pneumocystis c a r i n i i pneumonia (PCP), oral Candida, herpes simplex, and shigella (Fauci & Lane, 1984; 5 Goldstone 1985a; Bennett, 1986; Weber & Pinching, 1986). Rare tumors which can also be indicative of AIDS are: Kaposi's sarcoma (KS), lymphoma of the brain, and non-Hodgkin's lymphoma. Symptoms of AIDS vary from person to person depending upon the specific infection. People with AIDS are very i l l and can suffer from severe and debi l i tat ing symptoms such as muscle wasting, chronic cough, profuse diarrhea, sweating, generalized pain, and confusion. Treatment at this point is focussed on al leviat ing the specific symptoms and, i f possible, the opportunistic infections. There is no cure for AIDS and i t is highly unlikely a vaccine w i l l be developed in the near future due to the characteristics of the causative agent. AIDS is caused by the human T-lymphotropic virus type III/lymphadenopathy-associated virus (HTLV-III/LAV); i t is more commonly referred to as the human immunodeficiency virus or HIV (Bennett, 1985b; Canada Diseases Weekly Report Supplement, 1986; Fettner & Check, 1984; Goldstone 1985a). Although this virus is not one of the most contagious ones, i t has certain characteristics that make i t d i f f i c u l t to eradicate (Krim, 1985). One of i ts characteristics is 6 its a b i l i t y to become part of the c e l l i t infects and to rapidly replicate i t se l f and then infect other ce l l s . Once the HIV enters a c e l l i t persists for the lifetime of the infected person and can remain inactive for unknown periods of time. Although this virus may be inactive and not cause any symptoms, a l l people infected are considered carr iers . Periods of inact iv i ty are often referred to as the latency stage or the incubation period. Estimates of the incubation period range from 6 months to 8 years (CDWR, May 30, 1987; Goldstone 1985a; Krim 1985; Institute of Medicine/National Academy of Sciences, 1986; Williams, 1986). Another significant characteristic of this virus is that antibodies are incapable of destroying i t . Therefore, they are of limited use in the development of a vaccine. In addition to these characteristics the HIV is l ike flu viruses and has different strains which vary from person to person. This var iab i l i ty further compounds the d i f f i cu l ty of developing a vaccine since i t would need to be effective for everyone. Risk factors which increase susceptibi l i ty to AIDS are: practices which involve the transmission of body fluids part icularly semen and blood, multiple 7 sexual partners, and sharing needles used for intravenous injections (Henderson, 1984; Krim, 1985; Schechter, 1985). The risk of becoming infected with the HIV from casual contact is apparently nonexistent (Adams & Lowy, 1985; Bennett, 1986; Goldstone, 1985c; Haber, 1985; Schaffner, 1985; Valenti 1985; Williams, 1986). For nurses who are intimately involved with caring for AIDS patients, the risk factors are said to be extremely low (Beaufoy & Goldstone, 1985; Bennett, 1986; Dhundale & Hubbard, 1986; Gilmore, 1985; Institute of Medicine/National Academy of Sciences, 1986; Jackson & Goldman, 1986). AIDS is a unique disease which causes severe and debi l i tat ing illnesses and death. It is inevitable that many hospital nurses wi l l encounter patients with AIDS at some time in their careers. There is l i t t l e l i terature describing hospital nurses' experiences caring for patients with AIDS. It is therefore imperative that research about the impact of AIDS on hospital nurses be implemented. Thus, this study was designed to describe the experiences of hospital nurses caring for these patients. The research question for this study is: What are hospital nurses' experiences caring for patients with AIDS? 8 The major purpose of this study was to describe hospital nurses' experiences caring for patients with AIDS. This w i l l help nurses who have not yet cared for AIDS patients to understand what they might expect. Another purpose was to identify coping strategies which might help others to deal with their experiences. Methodological Approach The methodological approach selected for this study was phenomenology. Phenomenology is one form of qualitative research which looks at the phenomena being studied, in their to ta l i ty , from the perspective of the people who are involved. It attempts to describe a comprehensive view of the f u l l meaning of the phenomena being studied (Ray, 1985). Phenomenology gives direction to describe phenomena as they are lived by the informant (Lynch-Sauer, 1985; Munhall & Oi ler , 1986; Oi ler , 1982). It can be used when l i t t l e is known about a particular phenomenon. For these reasons phenomenology was selected for this study in order to understand the nurses' experiences caring for patients with AIDS from their personal perspectives and to identify the meaning these experiences had for these nurses. 9 Definition of Terms AIDS; Infection with the human immunodeficiency virus (HIV) which results in one or more opportunistic infections and/or rare tumors. Experiences caring for patients with AIDS: Personal feelings and perceptions about caring for patients with AIDS. Nurse: An individual who is a practicing member of the Registered Nurses' Association of Bri t i sh Columbia. Assumptions It is assumed that a l l nurses who have cared for an AIDS patient are qualified to speak about their experiences regarding AIDS patients and that their experiences are va l id . Limitations The nurses in this study were hospital nurses working on medical wards. Therefore, these experiences cannot be generalized to a l l nurses working with AIDS patients. 10 CHAPTER 2 REVIEW OF SELECTED LITERATURE Introduction In the last eight years there has been much written about AIDS. The lay press has printed numerous art ic les on various aspects of the disease (Allan, 1985; Barnes & Hol l i s ter , 1985; Bishop, 1982; Clark & Coppola, 1985; Lawren, 1985; McKay, 1983; Wall is , 1985; 1986). The researcher has collected over one hundred art ic les from a Bri t i sh Columbian newspaper between 1986 and 1988. Law, education, and social work journals have also published numerous art ic les discussing how AIDS affects their d isc ipl ines . However, the majority of l i terature has been found in the health care f i e l d . Larson (1988, p. 60) reports that, from July 1986 to December 1986, 481 AIDS art ic les appeared in various medical journals. During the same six month period, 36 AIDS art ic les appeared in nursing journals. A search of the Cumulative Index to Nursing and Al l i ed Health Literature from January 1983 to Apr i l 1987, revealed 169 AIDS art ic les in 46 different nursing journals which were mainly American (Larson, 1988, p. 61). 11 There have also been books written about AIDS by health care professionals (Durham & Cohen, 1987; Feldman & Johnson, 1986; Witt, 1986). This abundance of l i terature discusses many different aspects of AIDS; however, most of i t focusses on the epidemiology, treatment modalities, or physical care of AIDS patients (Armstrong, Gold, Dryjanski, Whimbey, Polsky, Hawkins, Brown, Bernard, & Kiehn, 1985; Beaufoy, Goldstone, & Riddel l , 1988; Bennett, 1985a; 1985b; 1986; C a l l i a r i , 1984; Dhundale & Hubbard, 1986; Gever, 1987; Henderson, 1984; Krim, 1985). There is also some l i terature which discusses the psychosocial implications for these patients and their families (Cecchi, 1986; Guarda & Peterson, 1986; Rubinow, 1984; Van Devanter et a l . , 1987). Even with a l l this l i terature there is l i t t l e which discusses the impact of working with AIDS patients on health care professionals, .particularly nurses. In this chapter l iterature which focusses on issues related to health care professionals caring for patients with AIDS wi l l be discussed with emphasis on hospital nurses. 12 Issues Related to Health Care Professionals Caring for Patients with AIDS Introduction The AIDS epidemic has created mass concern not only for society but also for health care professionals who provide intimate care to patients with AIDS. Health care professionals have met the challenge of treating and caring for these patients in an incredibly short time. The amount of research done on AIDS patients and the HIV is staggering; however, the impact of caring for patients with this disease on the professional and personal l ives of people in the health care f ie ld is not yet known. How this disease affects health care professionals and how they cope are two unanswered questions. Fear of Contagion It is undeniable that caring for patients with AIDS is physically, mentally, and emotionally stressful for the professional caregiver (Bennett, 1987; Christ & Weiner, 1985; Geis & Ful ler , 1986; McLeod & Silverthorn, 1988; Steinbrook et a l . , 1985; Van Servellen, Lewis, & Leake, 1987; Zuger, 1987). Fear of contracting AIDS is one concern which can cause this stress. Despite vast documentation of the 13 low risk to health care workers (Beaufoy & Goldstone, 1985; Bennett, 1986; Dhundale & Hubbard, 1986; Gilmore, 1985; Institute of Medicine/National Academy of Sciences, 1986; Jackson & Goldman, 1986) there is s t i l l fear among health care workers of contracting the HIV. Searle's (1987) study in Bri ta in revealed incidents where environmental health officers and d i s t r i c t nurses refused to v i s i t patients who were HIV positive. The researcher also noted that ambulance attendants, anesthetists, pathologists, and some nurses had serious concerns about caring for these patients. Butler & Lynch (1988), in a Canadian study, reported similar findings; hospital nurses, physicians, laboratory staff , maintenance personnel, and cleaners had high anxiety levels due to fear of contracting AIDS. A survey of physicians in training from New York and San Francisco revealed that 9% thought about the risk of contracting AIDS on a dai ly basis; 40% thought about i t weekly; and 50% had examined themselves at one point to check for signs of HIV infection (Nursing 1987, September, p.14). For hospital nurses the perceived risk is thought to be higher due to frequent exposure to body f luids . These nurses care for intravenous l ines , drains and 14 tubes; they suction ora l , nasal and endotracheal airways; and also provide basic hygiene, a l l of which can expose them to infected body f lu ids . Literature focusing on nurses indicates that they are also afraid of becoming infected (Barnard, 1987; Berry-Koziel, 1987; Blumenfield et a l . , 1987; Bolding & Goldstone, 1985; Gels & Ful ler , 1986; Haines, 1987; Reed, Wise, & Mann, 1984; Rubinow, 1984; Simmons-Ailing, 1984). Battern & Tabor (1983) stated that some nurses quit their jobs due to this fear and the resulting emotional s tra in , rather than refuse to care for patients with AIDS. Christ and Weiner (1985) also reported female staff resigning at their husbands' insistence. Geis and Fuller (1986) researched the response of hospice staff to the fear of AIDS and discovered that many were afraid of contracting i t despite educational inservices and an infection control policy. They also found that a number of the administrators did not recognize the fear among the staff and told the researchers i t did not exist. McMahon (1987) states: Staff understand the risk is minimal. They have been seeing and working with many people with AIDS for years now. The issue is fear. It may 15 be subliminal, but it is real. And facts do not necessarily dissolve that underlying emotion-especially because we can't say it's 100 percent safe. (p. 903). Nurses may also be pressured by family and friends to avoid caring for patients with AIDS because of the potential threat to the nurses themselves and the people who come in contact with them (Haines, 1987). AIDS patients often feel like social lepers and this attitude sometimes crosses over to the nurses. Family, friends, and sometimes peers ostracize nurses for caring for patients with AIDS (Butler & Lynch, 1988; Haines, 1987; Kennedy, 1987; McLeod & Silverthorn, 1988; Simmons-Ailing, 1984). Another issue that some health care professionals must face is homophobia. Homophobia Other studies have indicated that, in addition to fear of AIDS, many health care professionals have concerns about caring for homosexual or bisexual patients (Blumenfield et al., 1987; Bolding & Goldstone, 1985; Douglas, Kalman, & Kalman, 1985; Haines, 1987; Reed, Wise, & Mann, 1984; Rubinow, 1984; Simmons-Ailing, 1984). Reed, Wise, and Mann (1984) 16 researched nurses' attitudes regarding their care of patients with AIDS according to the anxiety they fe l t . They found homophobia was an ever-present issue but most nurses were generally tolerant of homosexual l i f es ty les . Another study indicated that 31% of the respondents, nurses and physicians, fe l t more negatively about homosexuality since AIDS emerged and that 9% agreed that "...homosexuals were getting what they deserve" (Douglas, Kalman, & Kalman, 1985, p. 1311). Homosexual and bisexual men are a high risk group, therefore health care professionals need to acknowledge and deal with their feelings about them. Terminal Illness Caring for dying patients requires special emotional stamina, but caring for patients with AIDS who are dying requires even more. AIDS patients are generally in the prime of their l i f e and are deteriorating rapidly t i l l death. Most of these patients are between 20 and 49 years and are at the beginning or the height of their careers (Blumenfleld et a l . , 1987; Bolding & Goldstone, 1985; Christ & Weiner, 1985; Haines, 1987; Rubinow, 1984). Caring for such young patients who are terminally i l l can cause feelings of frustration and powerlessness for 17 a l l h e a l t h care p r o f e s s i o n a l s . H o s p i t a l nurses who must care f o r these p a t i e n t s 24 hours a day may f i n d themselves becoming anxious and s t a r t i n g to t h i n k about t h e i r own death (Rubinow, 1984; Simmons-Ailing, 1984). Dying AIDS p a t i e n t s are very i l l and r e q u i r e constant n u r s i n g c a r e . The i n t e n s i t y of these p a t i e n t s ' p h y s i c a l and emotional needs can be overwhelming, r e s u l t i n g i n nurses becoming overtaxed, f a t i g u e d , and "burned out" (Bennett, 1987; Haines, 1987; Reed, Wise, & Mann, 1984; Simmons-Ailing, 1984). Summary T h i s l i t e r a t u r e review has presented some i s s u e s r e l a t e d t o h e a l t h care p r o f e s s i o n a l s c a r i n g f o r p a t i e n t s with AIDS. I t emphasizes how s t r e s s f u l i t can be to work with them. However, i t does not provide a c l e a r understanding of how i n d i v i d u a l h e a l t h care groups are a f f e c t e d , e s p e c i a l l y nurses. The l a c k of r e s e a r c h about nurses c a r i n g f o r p a t i e n t s with AIDS combined with' the f a c t t h a t nurses are f r e q u e n t l y the f r o n t l i n e c a r e g i v e r s , has l e d to the development of t h i s study. I t s i n t e n t i s to i n c r e a s e our understanding about what i t i s l i k e f o r nurses who care f o r these p a t i e n t s . 18 CHAPTER 3 METHODOLOGY Introduction The phenomenological approach was chosen for this study because i t enabled the researcher to investigate the phenomenon from the perspective of the informants. This method can be used when one desires to understand a phenomenon about which l i t t l e is known. In this chapter, the phenomenological method wi l l be presented with discussion of i ts h i s tor ica l foundations, sampling procedure, va l id i ty and r e l i a b i l i t y , and selection of informants. This study's c r i t e r i a for selection, selection procedure, and informants' characteristics w i l l also be presented. In addition, the ethical considerations, data col lection and analysis w i l l be discussed. Speigelberg's phenomenological method and direction for content analysis w i l l be outlined indicating how i t was implemented for this study. Phenomenological Method Phenomenology is one form of qualitative research. Leininger (1985) states that qualitative research refers to "the methods and techniques of observing, documenting, analyzing and interpreting 19 attributes, patterns, characterist ics , and meanings of specif ic , contextual or gestalt features of phenomena under study" (p. 5). This method attempts to look at the phenomena being studied based on the views of the people being studied. Qualitative methods have tradi t ional ly been used in sociology and anthropology when the meanings of a particular phenomenon are to be studied from the perspective of a certain culture or society (Munhall & Oi ler , 1986). The importance of these methods for nursing is that they " . . .are the essential means to know and understand phenomena of nursing" (Leininger, 1985, p. 23). Qualitative methods are congruent with the nature and goals of nursing since they support nursing from a ho l i s t i c perspective (Leininger, 1985; Sandelowski, 1986). Phenomenology is one type of qualitative research methodology which enables the researcher to study phenomena h o l i s t i c a l l y . It allows the researcher to understand the experience from the perspective of the informants as they have lived i t (Omery, 1983). Historical Foundations of Phenomenology Phenomenology has been described as a philosophy, an approach, and a research method (Field & Morse, 1985; Knaack, 1984; Lynch-Sauer, 1985; Oi ler , 1982; 20 1986; Reinharz, 1983). The 19th century philosopher Husserl is considered the founder of the phenomenological movement (Spiegelberg, 1970; 1981). Existential philosophers such as Marcel, Sartre, Merleau-Ponty, and Heidegger have also influenced the phenomenological movement with their own views of phenomenology (Spiegelberg, 1960; 1970). This movement grew out of the belief that people's behaviour could not be controlled in the same way as natural phenomena (Field & Morse, 1985). One of the objectives of this movement was to describe concrete experiences by identifying related meanings and values, as perceived by individuals (Spiegelberg, 1960). This objective is the focus of phenomenology as a research method: to describe the experience, identify the essence of the behaviour, and promote understanding of human behaviour (Omery, 1983). Phenomenological Sampling Procedure The sampling procedure for qualitative research is different from that of quantitative research. Fie ld and Morse (1985) differentiate between quantitative and qualitative research sampling procedures by reviewing the purpose of both methodologies. They state that the purpose of 21 quantitative research "is to examine the distribution of previously known phenomena in a population" (Field & Morse, 1985, p. 93). Random sampling techniques are then appropriate. For qualitative research, the purpose is to understand phenomena which may not be evenly distributed throughout the population. In order to understand a particular phenomenon, i t is necessary to seek out the specific population within which i t would be most appropriate to investigate the phenomenon to be studied. For phenomenological research a purposeful sample would be required (Diers, 1979; Fie ld & Morse, 1985). This type of sampling is also known as theoretical sampling (Glaser & Strauss, 1967; Wilson, 1985). The sample of informants would be selected based on their specific knowledge or characteristics which would be essential to the study. The size of the sample cannot be predicted prior to data col lect ion. This means that data are collected unt i l no new information can be obtained (Field & Morse, 1985) or when saturation is reached (Wilson, 1985, p. 419). Saturation occurs when the themes or major categories are repeated. A l l informants need to have information on the subject under study and be credible representatives of the population (Field & 22 Morse, 1985, p. 117). Subjects are selected because they can illuminate the phenomenon being studied, but the size of the sample is dependent upon the time i t takes to establish typical or atypical behaviours, experiences, or events (Sandelowski, 1986, p. 32). Val id i ty and Re1labi1ity When evaluating the va l id i ty and r e l i a b i l i t y of a qualitative study one must keep in mind that, since this method is essentially different from quantitative methods, the c r i t e r i a to evaluate i t must be different. The internal va l id i ty of qualitative research can be evaluated based on the cred ib i l i t y of the study (Sandelowski, 1986). Sandelowski (1986) states that "a qualitative study is credible when i t presents such faithful descriptions or interpretations of a human experience that the people having the experience would immediately recognize i t from those descriptions or interpretations as their own" (p. 30). Another way to determine the cred ib i l i t y of the study is i f other people view the experience in the same manner as described in the study. Reiman (1986) discusses validating themes by referring back to the original descriptions and by asking the informants i f the descriptions are accurate. 23 The external va l id i ty of qualitative research is threatened less than with quantitative research because in qualitative research the emphasis is on studying the phenomena in their natural settings and with few controll ing conditions. The e l i te bias is a problem in qualitative research, because subjects who act as informants are frequently the most art iculate , accessible, or high status members of their groups (Sandelowski, 1986, p. 32) . Rel iab i l i t y is a necessary prerequisite for va l id i ty . Re l iab i l i t y is the a b i l i t y of the study to be repeated. Auditabi l i ty is proposed by Guba and Lincoln (1981) to be the cr i ter ion for consistency of qualitative findings. An auditable study is one in which a researcher can c learly follow the decision t r a i l of another researcher (Sandelowski, 1986, p. 33) . Also, another researcher could arrive at the same or comparable but not contradictory conclusions given the researcher's data, perspective, and s i tuation. Sandelowski (1986) emphasizes that qualitative researchers need to be aware of ensuring va l id i ty within their research. 24 Selection of Informants In phenomenological research, informants are selected based on their having certain knowledge or characteristics essential to the study. Cr i t er ia for Selection The nurses for this study were selected based on the following c r i t e r i a : (1) they were hospital nurses; (2) they had cared for one or more patients with AIDS within the last year; and (3) they were wi l l ing to be interviewed and audio-taped on two to three separate occasions. Selection Procedure For this study, nurses from two major teaching hospitals in B.C. were recruited. The researcher presented her proposal to the nursing administration at the f i r s t hospital . This information was then passed on to nurses working on medical wards who were then asked to contact the researcher by telephone i f they were interested in participating. At the second hospital , the researcher made presentations to the nursing administration and also to staff nurses who had cared for patients with AIDS. Again, interested nurses were asked to contact the researcher. Information letters (see Appendix A) were also posted 25 on bul let in boards near nursing stations in these two hospitals. I n i t i a l l y , five nurses contacted the researcher for more information. Four of them were interested in participating and the f i f t h nurse declined stating there was nothing positive she could say about her experiences. Another three nurses were recruited from the second hospital after the researcher had made presentations to them. An eighth nurse contacted the researcher after reading the information letter and asked to participate. Character i s t ics of Informants A l l 8 informants were registered nurses; 3 of them were males. The ages of the informants ranged from 23 to 39 years. Of the 5 female informants, 3 were married and one had a ch i ld . None of the men were married or had children. The informants' education included one with a baccalaureate degree and 7 graduates from a diploma school of nursing, 3 of whom also had psychiatric nursing diplomas. A l l of them had 2 or more years of hospital nursing experience. The number of patients with AIDS they had cared for ranged from 1 to 50. Five of the informants had cared for 25 or more AIDS patients. 26 Ethical Considerations The researcher submitted her research for ethics approval to the UBC Behavioural Sciences Screening Committee for Research, then sent copies of the proposal to both hospitals' research committees. After hospital approval was obtained the researcher presented her proposal to the nursing administration at both hospitals and to staff nurses at the second one. The study was i n i t i a l l y explained to each nurse when s/he contacted the researcher. It was again reviewed at the beginning of the f i r s t interview and information letters (see Appendix A) were given to each informant. A written consent (see Appendix B) was then obtained from a l l informants which outlined their rights to refuse to participate, to withdraw from the study at any time, and to refuse to answer any questions. Confidentiality was ensured by keeping the names and personal information about the informants in a locked drawer. Interviews took place mainly in the informants' homes at their request, one informant was interviewed in a local community agency and another in the employing hospital . Audiotapes of interviews were 27 not available to anyone other than the researcher and members of her thesis committee with informants' approval. Transcripts were numerically coded so informants were not identifiable and names mentioned during the interviews were deleted. Four nurses requested numerical coding of the transcript excerpts to be left off the finished research in order to ensure their confidential i ty . A l l informants had the right to be present when audiotapes were being erased; however, when asked, a l l declined. Data Collection Data col lection for phenomenological research is usually done by participant-observation or interviews (Oiler, 1982). For this study, data were collected by interviews which were audiotaped and then transcribed verbatim as soon as possible after the interview. A total of 14 interviews were done, each one lasting from 45 to 100 minutes. I n i t i a l interviews were unstructured (see Appendix C for sample questions) in order to generate broad concepts and ideas (Field & Morse, 1985). Clar i f i cat ion and validation of these concepts and ideas took place in the second interviews. Six informants were available for second interviews; personal reasons prevented 2 of the 28 informants from being interviewed a second time. Data col lect ion then ceased after the 14th interview as no new information was provided, thus saturation had occurred. Time required to complete data col lect ion was three and one half months. Data Analysis Phenomenological data analysis according to Spiegelberg (1960; 1970; 1981) involves a systematic process of looking at the phenomenon with open eyes. For this study, interviews were transcribed verbatim with the researcher writing comments about nonverbal behaviour in the columns. Data analysis was an ongoing process simultaneous with data col lect ion. Spiegelberg's Phenomenological Method The researcher used Spiegelberg's (1960) phenomenological approach which consists of seven steps: (1) investigating particular phenomena; (2) investigating general essences; (3) apprehending essential relationships among essences; (4) watching modes of appearing; (5) exploring the constitution of the phenomenon in consciousness; (6) suspending belief in existence; and (7) interpreting concealed meanings. His f i r s t three steps are considered to be essential elements which have been accepted and practiced by phenomenologists. 29 Invest igating Particular Phenomena The f i r s t step is often referred to as descriptive phenomenology. It consists of three operations: intuit ing the phenomenon, analyzing the phenomenon, and describing the phenomenon. These operations are intimately connected and usually are not c learly distinguishable. In phenomenological intuit ing one concentrates on the phenomenon and becomes familiar with i t . One must forget preconceived ideas and view the phenomenon with "open eyes." Elements of the phenomenon are then compared and contrasted and recurring ones are identif ied. From these recurring elements, the "ingredients" of the phenomenon and their relationships are identif ied. The comparing and contrasting process is the analyzing operation. The last operation for this stage is the phenomenological description where the phenomenon is described and its nature, problems, and limitations are stated. The phenomenon is then compared with an existing framework. In cases where a new phenomenon or new aspects of an old phenomenon are discovered, Spiegelberg suggests describing i t by negation, metaphors, or analogies (1960, p. 673). He emphasizes that the main function of phenomenological description 30 is to provide guideposts to direct the reader to his/her own actual or potential experience of the phenomenon. Invest igat ing General Essences Spiegelberg 1s second step is closely linked to his f i r s t . For this step one must take the elements of the phenomenon and look at them as examples or instances that represent the general essence. The general essence is the common pattern shared by the grouping of similar elements. The grouping of elements results in identifying themes or categories. A procedure similar to step one would then be used. Apprehending Essential Relationships Among Essences The third step involves identifying the essential relationships among the categories. One uses experience, knowledge, and intuit ion to choose those which are essential to the phenomenon. These three steps are common to a l l phenomenological research. According to Spiegelberg (1960), his remaining four steps are not crucial to the phenomenological method but they assist one to c r i t i c a l l y analyze the phenomenon. 31 Watching Modes of Appearing To watch modes of appearing, one identifies what kinds of categories appear and the way in which they appear. Exploring the Constitution of the Phenomenon in Consciousness Exploring the constitution of the phenomenon in consciousness is to form a mental orientation or picture of the phenomenon in one's mind. Suspending Belief in Existence Suspending belief in existence is known as phenomenological reduction where the technique of bracketing is used. Bracketing is the detachment of personal experiences while at the same time preserving the content. This detachment allows one to suspend judgement about the existence or non-existence of this content. One views the content from a neutral perspective. Interpreting Concealed Mean!nqs The last step is to interpret concealed meanings within the phenomenon. Meanings which are not immediately apparent to,one's intui t ing, analyzing, and describing are discovered. One has to go beyond the obvious and unveil hidden meanings. 32 Content Analysis Content analysis for this study was done following Spiegelberg's approach. However, some modifications were made in order to make the process logical to the researcher. Intuiting the phenomenon (step one) involved reading a l l the transcripts without preconceived ideas. A l l transcripts were read numerous times which allowed the researcher to become familiar with the content. Phenomenological analyzing (step one) was done by constant comparing and contrasting of statements. Recurring statements were highlighted and their meanings were written out (step seven). The meanings were identified by reflecting back onto the original statement and constant re-reading (steps five and s ix ) . Also, as they were identified they were validated and explored further with other informants. This occurred simultaneously in the f i r s t interviews for some informants and the second one for others. These meanings were then organized into themes (step two) and were also compared with the original statements to validate that the themes accurately reflected the original statements (step five and s ix ) . The relationships among the themes (steps three and 33 four) were then examined to identify the essential ones. This analysis was then integrated into an interpretation of the structure and configuration of the phenomenon (step one). The researcher developed a diagram summarizing the analysis and then searched for existing frameworks in the l i terature with which to compare the newly-defined phenomena. No frameworks were identified as appropriate; however, theory about stress was found to be related to the findings and was therefore used to describe them. 34 CHAPTER* FOUR PRESENTATION AND DISCUSSION OF THE FINDINGS I n t r o d u c t i o n The study's f indings indicate that nurses' experiences car ing for pat ients with AIDS were s t r e s s f u l . There were d i f f e r e n t sources of s tress which the researcher categorized as e i ther in t erna l or ex terna l . Internal s tressors included: (1) fear of contract ing AIDS; (2) homophobia; and (3) car ing for dying AIDS pat i ent s . External ones were pat ient var iables and s o c i e t a l views. A lack of emotional support was a lso reported which added to the nurses' s t r e s s . Various coping s trateg ies were described by the informants and categorized by the researcher. Common ones which were used to deal with the nurses' o v e r a l l experiences were labe l l ed usual coping s t r a t e g i e s . These s trateg ies included: (1) phys ica l a c t i v i t i e s ; (2) re laxat ion a c t i v i t i e s ; and (3) t a l k i n g with others . Di f ferent ones were used to deal with the s p e c i f i c s t r e s s o r s . These were described as: (1) r a t i o n a l i z a t i o n ; (2) knowledge-seeking; (3) withdrawal; and (4) involvement. A framework descr ib ing-nurses ' experiences car ing for patients with AIDS is presented in Figure 1. 35 E x p e r i e n c e s As S t r e s s f u l Sources of S t r e s s I n t e r n a l S t r e s s o r s 1. Pear o f C o n t r a c t i n g AIDS 2. Homophobia 3. C a r i n g f o r D y i n g AIDS P a t i e n t s E x t e r n a l S t r e s s o r s 1. P a t i e n t V a r i a b l e s 2. S o c i e t a l Views Lack o f E m o t i o n a l Support C o p i n g S t r a t e g i e s U s u a l C o p i n g S t r a t e g i e s C o p i n g S t r a t e g i e s R e l a t e d To -I n t e r n a l and E x t e r n a l S t r e s s o r s 1. P h y s i c a l A c t i v i t i e s 1. R a t i o n a l i z a t i o n 2. R e l a x a t i o n A c t i v i t i e s 2. Knowledge-Seek i n g 3. T a l k i n g W i t h O t h e r s 3. W i t h d r a w a l 4. Involvement F i g u r e 1. Framework f o r Nurses* E x p e r i e n c e s C a r i n g f o r AIDS P a t i e n t s . 36 Content Analysis Nurses' Experiences As Stressful Stress was identified as the predominant theme in caring for patients with- AIDS. The following transcript excerpts illustrate how this theme was identified. R: What is i t like to care for a client with AIDS? I: Well, when I first started I was very scared, and apprehensive, and anxious, that maybe I could get i t . Like, it's so scary to get a disease that doesn't have any hope and if you're exposed you'll get i t . . . and I wasn't quite trusting of the isolation techniques...and I'm s t i l l not satisfied that gowning, gloving, and masking will help. I mean look at how long it took to discover it. . . I t originally only affected gays and now just about anyone can get it...For us at work it's really hard to care for these patients, especially when they are really sick and need a lot of physical care, and are dying and need a lot of emotional support, and their families and friends need it and we need *R: Researcher *I: Informant 37 i t too. It's scary, i t ' s very nerve wracking, and stressful to have to care for them. There's so much you have to deal with tin] this disease but don't get me wrong I do l ike the pat ients . . . I t ' s just the disease. . . In this excerpt, many ideas and concepts were identified such as fear, r i sk , terminal disease, lack of trust in isolation techniques, new disease, homosexuality, high risk groups, d i f f i cu l ty caring for the very i l l AIDS patient, emotional support needed by the patients and their families and friends, the nurse's need for emotional support, liking- the patients, and stress. Stress was the predominant theme which overall reflected a l l informants' experiences. In the previous excerpt the informant stated i t was stressful caring for patients with AIDS. Other informants described their experiences in similar ways. R: What is i t l ike for you to care for cl ients with AIDS? I: . . . I find that I'm more burned out after work when I have to care for some AIDS patients. I'm more mentally drained and i t ' s t i r i n g . You have to give them a lot (of] time and attention which many 38 times you don't have...You have other patients you have to care for a l s o . . . I t ' s a terr ib le thing. You know we're (thel ones cleaning them up and in contact with the infected fluids so i t is s tressful . Well, we a l l know the profession i t se l f is stressful but these guys can be a handful and you know worrying about i t . I: . . . car ing for them is real ly different. It's a lot of work 'cause you know taking time to do the isolat ion. . .There's no cure, so inevitably they're going to die . And, l i k e , for us to have to care for them when they're at that s tage . . . i s hard. . .I 'm not a pal l ia t ive care nurse. I'm a medical nurse...and yeah, everyone says we see death a l l the time, well sure, but for older people. You now have to worry about getting i t too...Gee i f I'm gonna now have to worry about getting i t , i t ' s gonna drive me nuts. I don't think that I can last too much longer with these patients -.... There's so much stress involved thinking about this and that. It 's a lot of work.-.. In these excerpts a l l the informants stated i t was s tressful . This theme was validated with other informants to determine whether i t accurately 39 represented their experiences as v e i l . R: Some of the other nurses have said i t ' s stressful how do you find it? I: Yeah, I'd agree with tha t . . . I find our workload has increased and you know with a l l the stigma and negative attitudes about i t , l i k e , that affects us too. Uhuh, i t is s tressful . R: One theme that keeps appearing is that caring for AIDS clients is s tressful . How do you find it? I: Oh yes, I think so. I mean who says i t isn't? Anyone who says i t i sn ' t , hasn't cared for them before. I mean real ly i t ' s a devastating disease. A l ! our patients die from i t . It 's not one of the more respectable diseases to die from like cancer or some accident. It's not a very pleasant way to d i e . . . Two informants responded to this question by stating that i t was not stressful yet as the interviews progressed their descriptions c learly indicated i t was. R: Other nurses have said i t ' s stressful caring for these c l ients . How do you find i t? I: Well no, I don't find i t s tressful . Maybe for them they're scared about getting i t or are homophobic. I've seen a lot of that but no, not for me. It's no different than caring for anyone else rea l ly . Later in the interview this informant spoke about caring for dying AIDS patients and stated i t was stressful . I: . . . i t ' s such an emotionally laden disease . . . I t ' s so intense when they are going to die and i t does affect my moods. I mean I have to be caring and intense at work so that when I'm at home i t does come out. . .But i t ' s d i f f i c u l t , i t ' s real ly d i f f i c u l t . I think that these guys are the same age as me* They are so young to be dying and with such a horrible disease but I have to force myself to keep my own perspective and carry on with l i f e . R: So do a l l dying patients affect your moods or is i t just these ones? I: Well no, not a l l . For some i t ' s a blessing to die . But i t ' s different with them 'cause they have so much to deal wi th . . . I t is stressful when they're dying, they have to make peace with themselves, their l i fes ty le and. . . that's depressing.. . 41 R: Some nurses have said i t ' s s tressful . One said i t was nerve wracking having to nurse them. How do you find it? I: Hmm no, not rea l ly . It 's just l ike caring for any other kind of pat ient . . . This informant then went on to discuss different aspects related to patients with AIDS which were "hard" for her to deal with. I: . . . i t ' s hard to deal with the mental parts, the dementia. You know their behaviour is so psychotic you always have to be on guard...And then trying to explain [to] their families and friends why they're tied down...You see some who may be a lawyer [s ic ] , or something and his mind has gone. It's hard to deal with that. . .and their sexuality too . . . One informant who had only cared for one patient with AIDS did not feel that her experience was "overly stressful ." I: Well, for the one patient that I had i t was not overly stressful . But I can see how i t would be...mine was s t i l l f a i r l y healthy, just in for antibiot ic treatment, and then he was able to go home. But I guess If they were worse off then i t would be stressful . 42 For these informants, not only was the overall experience of caring for patients with AIDS stressful but also specific aspects related to their experiences. One informant reported how thinking about AIDS evoked images of "death and destruction." I: . . . i t ' s a rea l ly different kind of disease. It's unique and i t ' s interesting to watch what happens to people when you mention i t . Everyone gets hysterical , even some nurses at work... that's 'cause i t ' s a new disease. I don't know, i t ' s the worst thing I've ever encountered... You just have to mention i t and everyone gets stressed out. Even just thinking about ( i t ] , i t ' s l ike death and destruction. R: Is that how you imagine i t? I: Uhuh, yeah, and that's 'cause i t ' s a devastating disease. . . It was common for the informants to view the disease i t se l f as s tressful . Various characteristics about AIDS such as i t s newness, the lack of a cure, the incidence rate, high risk groups, stigma, and the terminal aspect combined to make this disease devastating. Throughout the interviews these characteristics influenced the informants' 43 experiences. Having identified stress as the predominant theme, an examination of the l iterature related to stress was undertaken. Stress Stress has been defined in a variety of ways. It evolved from engineering where external stresses or demands placed on metal result in a deformation or strain (Cox, 1978). From this perspective, stress is viewed as a stimulus which results in a stress reaction. Selye (1974; 1976) describes stress as the response to a stress-inducing agent or stressor. He defines i t as the nonspecific response of the body to demands placed upon i t . This response is called the General Adaptation Syndrome in which complex physiological processes occur involving metabolic, cardiovascular, neurological, and endocrine functions. Prolonged exposure to stressors and overextension of one's physiological defense responses is thought to cause i l lness . Selye's theory has been c r i t i c i z e d for its over-emphasis on the physiological responses while ignoring the psychological aspects. Cox (1978) suggests that the psychological impact of the stressor on the person determines the physiological responses. 44 An interactional model of stress incorporates both these ideas however individuals are s t i l l viewed as passive, l ike machines. Cox (1978) and a colleague have described another model where stress occurs due to the relationships individuals have with their environment. Stress is defined as " . . .par t of a complex and dynamic system of transaction between the person and his environment" (Cox, 1978, p. 18). C r i t i c a l to this theory is the concept that stress is an individual perception. Other theorists also view stress as being individual is t ic (Antonovsky, 1979; Lazarus, 1977). According to Antonovsky (1979), stress results from exposure to stressors. He defines stressors as "a demand made by the internal or external environment of an organism that upsets its homeostasis, restoration of which depends on a nonautomatic and not readily available energy-expending action (Antonovsky, 1979, p. 72). The converse of stressors are routine s t imul i . Individuals respond automatically to routine stimuli or can adapt to them without major problems. Distinguishing routine stimuli from stressors is mainly determined by the meaning the individual attributes to the s t imul i . What is stressful for one 45 person may not be stressful for another. There is a multitude of factors that influences the way a person responds to stress. Paynes (1988, p. 226) summarizes some-of these factors as: personality, age, experience, gender, intel lectual a b i l i t y , and cognitive s ty le . Lazarus' (1977) theory includes additional factors such as genetics, nutrit ional status, and self-esteem. Stress responses or coping strategies are just as variable as the stressors. They are also influenced by similar factors. Coping can be defined as "problem-solving efforts made by the individual when the demands faced are highly relevant to the individual's welfare, that i s , a situation of considerable jeopardy or promise, and when these demands tax that person's adaptive resources" (Lazarus, A v e r i l l , & Opton, 1974, p. 60). The purpose of coping strategies is to eliminate, lessen, or withdraw from the stressor. Unresolved stress or ineffective coping results in burnout. Pines and Maslach (1978) define burnout as "a syndrome of physical and emotional exhaustion involving the development of negative self-concept, negative job attitudes and loss of concern and feeling for clients" (p. 233). Individuals perform act iv i t i es 46 automatically with no feelings or emotional investment (Storl ie , 1979). Stressful occupations l ike nursing are more prone to burnout (Cherniss, 1980). Stress in Nursing Stress in nursing has been well documented (Booth, 1988; Calhoun, 1980; F i r t h , McKeown, Mclntee, & Britton, 1987; Lawrence & Lawrence, 1987; Marshall, 1980; Mitchel l , 1988; P h i l l i p s , 1982; Scully, 1980). A study done by Wolfgang (1988) comparing job stress among nurses, physicians, and pharmacists revealed that nurses had s ignif icantly higher mean stress scores on 17 of the 30 items from the Health Professions Stress Inventory (HPSI). Three broad categories of stressors were represented including work overload, on-the-job conf l icts , and meeting cl ient needs. The conceptualizations of stress in nursing vary from focussing on the profession i t se l f (Davis & Fricke, 1977; Hott, 1976) to the different stressors inherent in the role (Gentry & Parkes, 1982; Lawrence & Lawrence, 1987; Maloney & Bartz, 1983). Stress related to the profession frequently involves its quest for higher status and recognition (Phi l l ips , 1982). Stressors inherent in the role of nursing include environmental conditions, patients' emotional 47 problems and those of their families, demands of the patients and supervisors, working conditions, interpersonal and co l leg ia l relationships, and contemporary moral and ethical dilemmas (Lawrence & Lawrence, 1987, p. 45). AIDS is the newest moral and ethical dilemma that nurses w i l l encounter in their careers. Caring for patients with AIDS has increased the stress in an already stressful profession. Stresses of caring for patients with AIDS. The appearance of AIDS in society has had an impact not only on the identified risk groups, but on health care professionals (Flaskerud, 1987; Henderson, 1988). Jenner, Levi , and Houghton (1986) state the levels of stress are high for nurses caring for AIDS patients. Nurses are in close contact with these patients and frequently they also experience stressors similar to those of their patients. Specific sources of stress related to caring for patients with AIDS are identified in the l i terature as fear of contagion, issues in sexuality, death and dying, stigma, exposure to alternate l i f e s ty les , and issues of confidential ity (Bolle, 1988; Christ & Wiener, 1985; Flaskerud, 1987; Simmons-Ailing, 1984). 48 In this study, informants described similar stressors which were categorized by the researcher as either internal or external. Sources of Stress Internal Stressors Internal stressors were identified as feelings related to caring for AIDS patients. Pear of contracting AIDS, homophobia, and caring for dying AIDS patients were the three internal stressors. These stressors frequently interacted with one another to reinforce or increase the stress. Fear of contracting AIDS. Fear of contracting AIDS was a common stressor. The risk associated with caring for these patients was stated repeatedly. Although the informants were knowledgeable about AIDS and recognized the risk to be very low, their fear s t i l l persisted. The following excerpt i l lustrates common concerns associated with the fear of contracting AIDS. I: ...everybody that when you are going to be working with AIDS patients tr ies to educate you. They t e l l you a l l about how i t ' s transmitted and they drum It a l l into you but there's s t i l l that irrat ional fear that since i t ' s new and you are there with i t a l l the time that some day you are going to do something careless or there's going to be a way of transmitting [ i t] that nobody knows about and you're going to get i t . Are the gloves thick enough? Are you going to run into an emergency and forget to gown? You know there's that fear, because this is deadly. And I read everything that comes out on i t and i t says we (nurses] have a miniscule r i sk , but s t i l l . Then you try to push that down with your rational side, the nurse side, that says this and this and this and as long as you follow the precautions you w i l l be safe . . . n this excerpt, the informant described her fear as i rra t iona l ." She continued with an example. I: For instance, people w i l l give food, l ike. . .boxes of chocolates. Patients that are leaving, and this is going to sound a l i t t l e peculiar, but i f somebody Joe average gives chocolates everybody digs right in . If a BBF [blood and body fluids] patient gives chocolates, there's a few seconds of hesitation. Everybody knows that nobody has just spit a l l over the chocolates [laughs] to give them to you, but you're 50 a l l thinking how long do ve leave these chocolates before they're okay. Because the AIDS virus doesn't survive outside the body for so long vhich is tota l ly i rra t iona l , but you're dealing vith something that causes panic in the major population and i t ' s the same for us. Other informants also described their fear in similar ways. I: . . .ve a l l know about this disease. We knov hov i t ' s transmsitted. We knov vho the high risk people are, so vhat's the problem? Why are ve a l l afraid and I ' l l admit i t . . . y e s I am scared but i t ' s not that easy...Sometimes this [fearJ is so, i t ' s real ly out of your control . Like, ve just don't knov what we're up against. It doesn't matter vhat ve knov nov i t ' s s t i l l nev. Scientists have made mistakes before vith these kinds of diseases. . . I: . . . i t ' s the fear of the unknovn rea l ly . It's irrat ional yet i t exists . . .There's no guarantee ve von't get i t . . . I: Most people, l ike the public, are afraid of i t but think of us and hov ve are the ones caring for 51 these people. We are the ones in contact and being exposed [voice raised]. It 's not rational real ly but then again what do we know about this disease. . .? There have been no reported cases of occupationally acquired HIV infection among health care workers in Canada (CDWR, October 29, 1988). The U.S. Centers for Disease Control in Atlanta, coordinate the worldwide reports of occupational exposures. Since 1983, there have been 15 such exposures where the health care workers have seroconverted to HIV antibody, and one worker has developed c l i n i c a l AIDS (CDWR, August 13, 1988, p. 141). These 15 individuals represent worldwide experience indicating that the occupational risk is low, but not zero. Despite repeated emphasis of this low risk to health care workers, some individuals cannot overcome- their fear of infection (Beaufoy & Goldstone, 1985; Bennett, 1986; Dhundale & Hubbard, 1986; -Gil-more, 1985; Institute of Medicine/ National Academy of Science, 1986). The lack of a guarantee that they could not contract AIDS from their patients was at the center of the informants' fear. I: . . .you know, you don't know who to believe. What should you do. There's no 100% guarantee we 52 won't get i t . We're now l isted as a high risk group. They say i t ' s hard to get but you can s t i l l get i t . I: . . . there's a low likelihood that I might get i t , l ike an occupational hazard, but who real ly knows. They can't be completely certain, this is the part that's scary. I wouldn't have this problem i f i t was curable l ike I've gotten infections before from them, but gee some antibiotics and you're okay...not with this , i t ' s l ike whammy and you're gone. In a survey of nurses' attitudes towards AIDS patients, one half of the respondents reported believing that AIDS can be transmitted to hospital personnel due to patient contact and despite precautions (Blumenfield et a l . , 1987). Fear is a very strong emotion especially when i t involves risks to one's personal safety and well-being. These informants were aware of the higher risks associated with other infectious diseases l ike hepatit is; however, they believed no comparison could be made because AIDS is fa ta l . 53 I: . . . t h e y say i t ' s easier to get hepa t i t i s than AIDS, but at least with hepa t i t i s you don' t always d i e . I: . . . i t ' s not even l i k e hepa t i t i s where you can or you c a n ' t . . . i f you're exposed you are going to get i t . . . The Blumenfield study indicated that ICU nurses were s i g n i f i c a n t l y more a f r a i d to work with pat ients who had AIDS than with those who had in fec t ious hepa t i t i s (Blumenfield et a l . , 1987). These researchers hypothesized the ICU nurses are more f requent ly exposed to body s e c r e t i o n s . Worry about being care less and a c c i d e n t a l l y stabbing oneself with a contaminated needle or not fo l lowing the i s o l a t i o n precautions was f requent ly expressed by nurses In th is study. I: . . . t h e r e was one time I was exhausted at the end of the day and I d i d n ' t wear g loves . I don' t know why, t i r e d or lazy and I emptied a bag, you know a f o l e y , and s p i l l e d some on me and boy d id I wash and s c r u b . . . I: I know there have been two staff members on my floor, no, three that have been stuck with contaminated needles and i t ' s quite a hysterical moment. I suppose I should l i s t that under my fears nursing them. R: One of your fears is to stab your finger? I: Yeah, that's right and i t ' s more l ike ly that this wi l l happen 'cause i t ' s a common occurrence and. . .also codes that's another one. Being careless in emergency situations and acting on instinct was another concern expressed. I: ...sometimes we've had codes happen and your natural instinct is to go to the pat lent . . . You don't even think about i s o l a t i o n . . . You automatically have a react ion . . . but you now have to stop.. .You just can't do what your emergency system te l l s you to do. You have to stop and protect yourself and I worry that maybe I wouldn't do tha t . . . I: . . . i t ' s the emergency that real ly scares me...You don't know how you're gonna react. You're on automatic p i lo t . You don't have time to t h i n k . . . 55 At one of the employing agencies there was a policy that a l l employees would f i r s t protect themselves before going into an emergency s i tuation. Although these informants were aware of this policy, they remained worried about how they would react in an emergency situation. The survey done by Blumenfield and others (1987) revealed overwhelmingly that the nurses would be reluctant to perform mouth-to-mouth resuscitation on patients with AIDS. Fear of contracting AIDS was also related to the belief that other modes of transmission would be discovered which caused some informants to practice more stringent isolation precautions. Batchelor (1984) reported instances where health care professionals have enforced unnecessary and extensive infection control practices to combat fear. Wearing two pairs of gloves was frequently cited as an additional measure since the gloves were of poor quality. I: . . . I don't know i f I should t e l l you th is , but I've started to wear double gloves since I had one time where I found a hole in one and so this way i t gives me more protection, just in case . . . I t ' s more expensive, however the alternative is worse. 56 I: . . . I am overcautious. Like, I do gown and glove a lot more than is the policy because I have a feeling that ten years down the line they're going to say gee you know you can get AIDS when i t is assimilated through the skin. I think maybe ve should've been wearing gloves more often. Well, I'm not going to be the one to say look at me I've got AIDS I should 1ve worn gloves. Well, I wear gloves and I don't care and, l ike I say, I have been c r i t i c i z e d for i t [informant vas yel l ing and banging f ists ] . This informant elaborated on other precautions she took. I: I vent through a stage vhere I vas constantly bleaching a l l my uniforms everytime I vas vearing them and i t ' s not good for the uniforms, [laughs] And my vork shoes v e i l , they s t i l l don't come into the house they stay out in the carport. But I think sometimes that, in my mind, I von't get i t . But i t s t i l l doesn't stop the extra precautions . . . I t may not be rational but, l ike I say, I'm overcautious. This informant stated the most negative aspect about caring for patients vith AIDS vas the personal risk 57 involved. She spoke defiantly about the extra precautions she took and was very forthright in admitting her fear. Other informants were embarrassed talking about the extra precautions they took. R: You said something earl ier about what you did to protect yourself. Can you elaborate on that? I: Well, I feel sort of funny te l l ing you this stuff . I'm not supposed to be doing i t rea l ly . I'm embarrassed about i t [laughs]. I wear two pairs of gloves at a time and I wear gowns and masks even though I've been told by [name] not to do th is . Actually [name] was real ly annoyed with me and sort of bawled me out but i t ' s not only me. Others do this too but I was seen doing i t . . . I think that i t helps. I'm doing everything I can to not get i t . I know i t seems s i l l y , [laughs] Pear of contracting AIDS was present not only in the less experienced informants but also in those who had cared for many patients with AIDS. I: For me, and I work with them a l l the t i m e . . . i t ' s the r i sk , l ike I say , . . . that [has] got to be the worst thing about them... 58 I: I don't th i n k you ever get over i t . You're always on guard and the worry of i t i s s t i l l t h e r e . . . One of the more experienced informants s t a t e d she had r e s o l v e d her fear but i t returned when she was working with AIDS p a t i e n t s on a d a i l y b a s i s . I: Okay, i n i t i a l l y I thi n k the f i r s t AIDS p a t i e n t was on t h i s f l o o r and...everybody had s o r t of a shock r e a c t i o n and l i k e , oh my God what are we going t o do t h i s person has AIDS.. .We were gowning and g l o v i n g everytime we went near him and...I s t a r t e d to get scared a g a i n when I thought I had gotten over i t , you know. There were a l s o p e r s o n a l concerns f o r some informants which i n c r e a s e d t h e i r f e a r . One informant wanted to s t a r t a f a m i l y and was a f r a i d of being exposed t o the i n f e c t i o n s p a t i e n t s with AIDS commonly c a r r y . I: ...I would r e a l l y l i k e t o have a f a m i l y but I'm a f r a i d to become pregnant and work on [names ward]. I've seen- urara nurses become pregnant i n the medicine end of the h o s p i t a l and u s u a l l y they've been placed working with p a t i e n t s i n non-communicable d i s e a s e s , but i t doesn't sway my 59 fears. . .You don't know when you get pregnant. I s t i l l don't know i f my fear is a r ea l i s t i c one or not but to me i t i s . This is what makes i t worse. Another informant who was pregnant was worried about working with AIDS patients. I: . . . w e l l , I had just found out that I was pregnant and I was dealing with three or four who had large herpes ulcers and they weren't sure i f they had this toxoplasmosis that a lot of them c a r r y . . . I t was a big worry and I almost became repulsed by them, l ike , I didn't want to have to deal with them you know. R: Was this because you were pregnant? I: Oh no i t was beyond the fact I was pregnant...and you know I had been reassured that i t was no different than working with anybody else and. . . I was working night shift one night and reading one of the manuals. Sure enough, there was something right there from Health and Welfare Canada that said pregnant women should not work with them and I was rea l ly put off. No one told me th is . Now I worry about my baby. I'm real ly mad... 60 The risk to pregnant health care workers is usually due to the cytomegalovirus (CMV) that some AIDS patients carry. This virus is known to be teratogenic. Fear was present for a variety of reasons; informants who stated they were homophobic experienced more fear than the others. Homophobia. Homophobia was another internal stressor. It can be defined as the pathological or unreasonable fear of homosexuality (Marmor, 1980). In this study, no labels of homophobia were applied to any informant. Individual informants who described themselves as homophobic were included in this category. Homosexuality is a sensitive issue to discuss and i n i t i a l l y these informants were hesitant to talk about i t . Questions were posed indicating that homophobia was documented in the l i terature. Also, informants were told others had expressed this feeling. This method resulted in three informants acknowledging they were homophobic. Informants who said they were homophobic believed this was another reason why i t was stressful caring for these patients. 61 R: From what I have read about AIDS there are some people who are uncomfortable with homosexuality. How do you....? I: Well, yes, i t makes me uncomfortable this gay business. I'm sort o f . . . a l i t t l e bit homophobic... This is what makes i t even harder. You know, having to deal with their sexuality. It's d i f f i c u l t enough to deal with other patients who are not gay, but i t ' s real ly hard to understand why they are that way...Some people may think I'm anti-gay but I just don't think i t ' s right...Maybe i t ' s not right for me to think that, but that's what I believe. R: Uhuh. I: And I just can't accept that kind of l i fes ty le . . . It's against God to be homosexual... But here at work I know our rel igion shouldn't enter i t . This informant- described herself as very religious and as having had l i t t l e exposure to homosexual people. Religion and inexperience in dealing with homosexual cl ients have been cited as factors affecting the acceptance of AIDS patients (Flaskerud, 1987; Reisman, 1988; Young, 1988). A study by Young (1988) found 62 that nurses who associated the i r negative b e l i e f s about homosexuality with t h e i r r e l i g i o u s b e l i e f s , had other areas of the i r l i v e s that contradicted the i r r e l i g i o u s teachings. She noted premarita l sexual intercourse was a lso contrary to the nurses' r e l i g i o u s b e l i e f s yet they d id not fee l as negat ive ly towards people who engaged in th i s forbidden a c t i v i t y as they d id toward homosexuals. One possible reason for t h i s variance i s that homosexuality may s t i l l be viewed as deviant behaviour and against the t r a d i t i o n a l fami ly . A survey of nurses, general p r a c t i t i o n e r s , and medical s p e c i a l i s t s who treat sexual ly transmitted diseases (STDs) reported s i m i l a r f indings (CDWR, Oct . 19, 1985). Two of the predic tors of a m o r a l i s t i c a t t i tude were being Catho l i c and heterosexual . It was a lso noted that being a profess ional concerned with STDs does not o b l i t e r a t e the moral a t t i tudes re la ted to one's background. Negative fee l ings about homosexuality have been l inked with the a t t i tude that those who pract ice i t deserve AIDS ( K e l l y , S t . Lawrence, Hood, Smith, & Cook, 1988). Other informants who d id not agree with homosexuality expressed t h i s a t t i t u d e . 63 I: . . .you know when I found out who the high risk groups were, you know the homosexuals and the drug users, that real ly bothered me. Because I don't agree with that way of l i f e and in some respects you know i t ' s their own fault . I: . . .and I didn't understand... I was homophobic . . .And though I had and have friends that are gay males and gay females that I know of from my past, I had the feeling that these patients deserve to be s i c k . . . I: . . . I think that at f i r s t I was put off and became homophobic because they are so blatant about their homosexuality. Some of them were s t i l l talking about picking up people you know what a wonderful time they had in Hawaii . . . Blame was not only attached to the patients with AIDS but to the whole homosexual community. Anger was expressed towards this group for having "passed AIDS onto the heterosexuals". I: If we look now...we can see the spread of AIDS into us because of them, their habits. R: Us being the non-gays? Is that what you're saying? 64 I: Uhuh, i t was f i r s t discovered in the gays . . . I t makes me so mad, l ike , look at us now. It's a l l over the place, i t ' s rampant. R: So do you believe that they are responsible for it? I: Well, who else? It's their just dessert. It's not me! I know i t ' s just a virus and i t just so happened to get a gay guy f i r s t , but i f you think about i t , would i t ever have happened i f not for them being good reservoirs? The anger expressed by this informant was related to her overwhelming fear of contracting AIDS from her patients. She stated her feelings about homosexuality were only related to those who had AIDS and she had no d i f f i c u l t y caring for other homosexual patients with different diseases. R: You said something earl ier about other gay patients not bothering you or you didn't have problems caring for them... I:. Uhuh, yeah, i t ' s l ike i f they don't have i t , i t ' s not real ly gonna affect me right? R: So, is i t more the fear of getting AIDS than caring for this type of patient? 65 I: Yeah, that's i t . It's the patients themselves the ones with AIDS. There's the . . . fear. The survey by Blumenfield and others (1987) revealed that about one quarter to one half of the nurses were afraid to care for homosexuals because of AIDS. However, one must take into account that 67% of the AIDS patients these nurses cared for were prisoners and had histories of IV drug abuse. The same survey was done six months later and revealed a decrease in this concern on the medical/surgical units which was attributed to experience and education. In this study, i t was more the fear of AIDS than caring for homosexual patients that caused the most concern. Another informant who was also very frightened said she did not trust the AIDS patients because they may deliberately try to infect her. This belief was based on an incident she had with an abusive patient. Feelings of homophobia and blame were intensified when affectionate behaviours were observed between patients with AIDS and their lovers. According to Myers (1985) physical affection between homosexual couples is not considered socia l ly acceptable. I: . . . w e l l , I didn't want to have to deal with them anymore after seeing them hugging and kissing. 66 That real ly got to me. It's not normal and they know how i t ' s transmitted they shouldn't do tha t . . . Although there is no research indicating AIDS can be transmitted by kissing, there was the underlying perception that new modes of transmission would be discovered. Therefore, this informant was not only uncomfortable with the behaviour, but was also concerned about the patient's partner becoming infected at a later date. The previous informant c lar i f i ed her concern. I: I think I told you last time, when we met, about...my worry that i t ' s new and there's not enough information about i t . So, i t ' s thinking that his friend or lover, or whatever they c a l l each other, is going to get i t . Maybe two, three, or more years later . . . there's that too. Negative feelings were also reinforced when the informants cared for stereotyped homosexual patients. Storms (1978) believes that increased contact with homosexuals may serve to dispel false sterotypes and lessen homophobia in some individuals; i t may also heighten anxiety and increase hos t i l i ty in others. The next excerpt presents an informant who learned to be more accepting of homosexuals due to increased contact. 67 I : . . . w h e n I t h i n k about hov I 've been exposed to them up f r o n t , e v e r y d a y . . . f o r t h r e e and a h a l f y e a r s . And hov I 've come around t o . . . m o r e acceptance of gays i n the community and an u n d e r s t a n d i n g of t h e m . . . I n c r e a s e d c o n t a c t v i t h homosexuals had a d i f f e r e n t e f f e c t on o ther in formants vho expres sed l i t t l e t o l e r a n c e f o r them. I : I t h i n k the f i r s t one I had was, you knov, the r e a l s t e r e o t y p e d homosexual; the h i g h p i t c h e d v o i c e , the v h i n i n g , and the hands moving around a l l the t i m e , and he even had h i s n a i l s p a i n t e d . Oh b r o t h e r ! So , I d i d vhat I vas supposed to v i t h him and vas q u i c k about i t and I thought , you knov he c o u l d have prevented t h i s i f he v a s n ' t t h a t v a y . Other in formants vho vere not homophobic d e s c r i b e d these p a t i e n t s as v e r y " m e t i c u l o u s , " " i n t e l l i g e n t , " and "easy to t a l k t o " . I : . . . A I D S p a t i e n t s u s u a l l y are v e r y good to vork v i t h . . . T h e y ' r e [a] v e r y m e t i c u l o u s type of p e o p l e , v e r y c l e a n , v e r y , you knov, b r i g h t , v e r y i n t e l l i g e n t . . . T h e y a r e younger a n d . . . v e r y easy to t a l k t o . I e n j o y them as p a t i e n t s , except vhen they have dementia o r , yeah , vhen t h e y ' r e d y i n g . T h a t ' s hard t o d e a l v i t h . . . 68 I: Yeah, l ike I don't differentiate other than the r i sk . You know, I quite enjoy looking after these guys you know because they are wonderful guys, you know. I real ly do . . .L ike I say, other than the emotional part at the end, the dying, and the r i sk , they're great. They're funny and they're, you know, real ly neat. This informant said she had no problems with the issue of homosexuality because she had a very close gay friend. Baumgartner (1985) believes that suboptimal care can be provided by health care workers who have strong feelings of homophobia. There have also been reports of patients with AIDS being neglected, rejected, and isolated by the very people whose job i t is to care for them (Baumgartner, 1985). This lack of care is based on the stigma attached to these patients. Stigma is the mark of disgrace that is attached to those people who have disvalued roles (Goffman, 1963). It is reflected in prejudicial attitudes and discriminatory behaviours. Ehrl ich (1973) views prejudice as a form of derogation; the individual is subject to disparaging remarks, generalizations, and 69 hos t i l i ty . Although his work focusses on prejudice and ethnocentricity, he describes prejudice as negative attitudes towards a group of people. His tor ica l ly , homosexuals have been stigmatized due to prejudicial attitudes about their sexual preference (Marmor, 1980). People who have sexually transmitted diseases are also stigmatized. Since AIDS is a sexually transmissable disease that affects homosexuals, patients with AIDS suffer from double discrimination. Informants who stated they were homophobic believed this did not interfere with the nursing care they provided. One of the informants was defensive and said: I: . . . I 'm s t i l l a good nurse. It doesn't make me bad or anything to admit this . You know, I've been told I give good care and I think these guys get good care from me, I mean, I may not accept them or l ike their l i fes ty le but I s t i l l nurse them...My personal beliefs don't affect my work. It doesn't interfere with i t . . . There is confl ict ing documentation about how beliefs and attitudes affect behaviour. Not a l l subjects act according to what their attitudes imply. Fishbein 70 (1966) states that "rather than v i e w i n g . . . behavioral intent ions as part of a t t i t u d e , these phenomena must be studied as var iables in the i r own r i g h t , that , l i k e a t t i t u d e s , may or may not funct ion as determinants of a s p e c i f i c behaviour" (p. 213). Other var iables re la ted to a t t i tudes and behaviour must be studied before determining the ir r e l a t i o n s h i p . Reviews of studies on the r e l a t i o n s h i p between prejudice and behaviour a lso indicate that other factors need to be considered before concluding that p r e j u d i c i a l a t t i tudes lead to d i scr iminatory behaviour (Bray, 1950; Brookover & Hol land, 1952; L i n n , 1965). Therefore, although there i s some evidence to suggest that homophobia is re f l ec ted in the care of patients with AIDS, i t is beyond the scope of th i s study to state whether the informants a c t u a l l y d id or d id not exh ib i t d i scr iminatory behaviour towards the i r pat i ent s . Caring for dying AIDS pat i ent s . Unlike the other in terna l s t re s sors , fear of contract ing AIDS and homophobia, car ing for dying AIDS pat ients revealed the most compassion and empathy for these pat i ent s . The informants' focus changed from being only concerned about the ir own feel ings to recogniz ing what these pat ients must face. 71 One informant became very close to a patient and disclosed personal information. I: . . .he asked me i f I vas gay which I am. And i t ' s something I don't l ike to divulge at work.. .I don't think i t ' s anybody's business, but the reason I fe l t I could t e l l this fellow was because he was so wanting, I f e l t , someone to understand him. So I f e l t , why not, he's not going to be around for much longer.. .So I was going to do whatever I could for him and that night when I finished sh i f t , [this informant was working on another ward] I was going to see him because I was going to have him the next day. But he died that night, so I didn't even get the chance to say good-bye. R: Oh you must have been very upset. I: Yes but we got very close in the sense of sharing just his emotions, and what I fe l t he needed to hear was that he was okay. So what i f he had gotten a rotten deal he was s t i l l an okay person and that was a l l I wanted to t e l l him. It made me upset and real ly i t was quite frustrating that I never got. . . the opportunity to t e l l him. This informant described other frustrations he experienced caring for these dying patients. 72 I: . . . I see our role as nurses caring for AIDS is to lessen their hurt and help them deal with death. To t e l l them they are okay persons. . .It is more intense when they are going to die. R: What do you mean by intense? I: Everything is so meaningful for these patients when they are dying so your nursing care must be meaningful to them. You must remember that they are dying and to make their last days [as] comfortable as possible and let them die peacefully and knowing that they are okay and someone cared. But i t ' s also frustrating to not be able to offer them any hope, to say i t w i l l be okay, we'll give you some antibiotics and care for you, and you' l l be okay in a few days...And their age that too is frustrating. They're young, around my age. Other informants described this sense of hopelessness and the frustration of caring for such young patients who were dying. When asked about how they felt about caring for patients with AIDS when they are dying, several informants responded as follows. I: Death is sometimes a blessing. We a l l know that. But for them, when there is no hope, absolutely none whatsoever, i t ' s t e rr ib l e . 73 What can you do for them? What can you do? Just the basics that's a l l . I feel bad for them when there's nothing to look forward [to] except dying. It's not as i f they have led a f u l l l i f e which is what we say to the elderly. Yeah, he lived a f u l l and r ich l i f e , not for these guys they're just beginning the best years. I: . . .we l l a lot of things to deal with a l l of a sudden...A lot of people have said i t ' s l ike getting handed a death sentence which I guess you can't real ly deny, because I forget how long they expect them to l i ve . It's not that long. I: Let me t e l l you, i t ' s or i t w i l l be the hardest thing you' l l ever have to do. They come to you and you pump them f u l l of ant ibiot ics , antifungals, or whatever they need and try to fix them up a l l the time thinking what's the use? What's the bloody use? They're only going to die shortly.. .We just provide custodial care when they are near the end...What else is there? There won't be any miracles for them, there's no remission l ike cancer, there's no real effective treatment at this t ime.. . 74 Believing death was always inevitable caused these informants to feel hopeless and powerless over what they could do. They did not view themselves as being able to help the patients die peacefully or comfortably. Some informants refused to accept death for these young patients. I: . . . I t ' s the fact that they're so young...I know what you're going to say, young people die from leukemia, cancer, accidents, the whole b i t . I've heard this before from [name], but at least with the other things you have a chance, maybe a smidgen of a chance but i t ' s there, right? Except for the car accident, but then again i f help arrives early they s t i l l have a chance. It's a matter of accepting death for these young people. Informants who could not accept death in people so young found i t was more d i f f i c u l t to care for them when they were dying. Some informants who were close in age to their patients identified with them. I: . . . so when they come here, you try to do whatever you can.. .They're so young, most of them are mine [sic) and-your- age, very young people. That's another burden to add to the stress on you. You're looking at someone your age die and i t ' s not a pretty sight. 75 R: What is i t about their death that bothers you the most? I: Why i t ' s their age. They're only twenty, th ir ty . I'm that age I can't imagine being told my l i f e ' s over. Could you imagine that? Caring for them and observing these patients die reinforced the fear of contracting AIDS for some informants. Another informant was reminded of her fear when caring for many dying AIDS patients. I: . . .Jesus Christ , there was a time when I had three of them on their last leg and i t seemed l ike they were a l l coming in to die and I started to worry again and be extra careful . R: What worry about. . . I: Yeah, I thought again about the risks involved. It seemed like at least every other day one of them was dying and, l ike I say, I had to watch myself and be c a r e f u l . . . It was more stressful caring for many dying AIDS patients a l l at once or during a short period of time. I: Yeah, just once in awhile where you think I'm going to go crazy i f I see one more AIDS patient die in front of my face you know I'm going to go crazy! 76 Pear of death, discomfort with death, and exposure to dying patients are factors which can contribute to stress and burnout among nurses (Bolle, 1988; Pruyser, 1984). Dames' (1983) study indicated the amount of exposure to dying patients is associated with higher levels of burnout. Although some studies do not confirm this finding (Yasko, 1983), these informants experienced more stress caring for many dying AIDS patients. I: I had an assignment one time that was so bad I had to go home early to get away from these pat ients . . . I had two of them who were dying, cheyne-stoking. Well, one was doing that; the other was sick to his stomach and was so feeble and then, get this , they wanted to admit another one with I can't remember what, something t err ib le . Anyways, i t turns out he's ready to die too. We had to move patients around just to get him in a private. We moved someone else and i t ' s about 3 o'clock or so and I was so upset. It was my last set of shifts so I said I was sick and went home early. R: Was i t the additional cl ient that upset you? The increased workload o r . . . ? 77 I: That too, but I had seen too many of them die. There was a period there when they a l l just upped and died a l l at once, l ike they'd made a pact or something to a l l die just to drive us nuts . . . When there were periods of many deaths the informants did not have adequate time to grieve or cope with the f i r s t death before being confronted with another. I: . . . I had a week where two guys died a day apart and then a young kid came in with PCP, arrested, was revived, sent to ICU, then returned to us. What a week! There was no time to think, to feel sad, or anything. It was such a horrible t ime. . . I: It burns you out when you care for them a l l the time. You real ly need a break, especially when you know them and they're dying left and r i g h t . . . Frequently, the patients with AIDS were well known to the informants. Usually they had been admitted to hospital a number of times before they reached the pal l ia t ive stage. These patients were considered to be friends and this made i t more d i f f i c u l t to care for them. I: . . .over the last eight weeks I've seen, oh, maybe four repeaters that I've personally had as patients come in to d i e . . . 78 R: Does i t make a difference when you know them? I: Oh gosh yesl They're my friends now. We know a l i t t l e bit about each other, they're l ike a part of your family. And we try real ly hard, i f someone has been here before and comes back in , we try to get them back on the same ward you know for consistency and famil iar i ty . So i t ' s nice for them and i t ' s nice for u s . . . Sometimes though i t ' s better i f they are dying to go to another ward because you don't l ike to watch... I: ...when they've been in many times and you fix them up and they come back and you fix them up again, and then i f they don't have anyone at home they come in to die. And you say, well this is i t , they're dying. . .This i s hard to deal with because by this time they are a friend. Another frustration described was having to care for the "second generation" patients with AIDS. I: ...Now just in the last four or five months, I'm finding i t real ly hard . . . because we're getting what I c a l l in my mind second generation AIDS. We're getting the lovers of the people that have died. . .And i t ' s real ly frustrating because you've 79 gone through the grieving process with these people once and then they come in for themselves... Informants found i t was more stressful when they had to care for the partners of their i n i t i a l patients with AIDS who had died. Also, when friends or co-workers became i l l i t was especially traumatic. I: . . . I f i t ' s a co-worker . . . It's real ly devastating, so much more d i f f i c u l t when i t ' s staff . It's even harder trying to deal with your feelings, you know, l ike why him? Why him for goodness sakes? Some of the informants expressed concern about their lack of knowledge and s k i l l s caring for dying patients in general. They believed these patients required specialized nursing care. I: It 's mainly the emotional support dealing with their feelings about death, how to make peace with themselves. I mean dying real ly is a specialty area of nursing and I'm not an expert on i t , far from i t . I find I learn as I go along and I could certainly do with an inservice on i t . Actually, I think there was one but I'm not sure. But when you think about the whole area of death and dying l ike Kubler-Ross' works, i t ' s mind-boggling what you 80 real ly should know about dying before you can care for them...the knowledge and s k i l l s the- things that are different for them. Other informants also recognized their lack of knowledge and s k i l l s caring for dying patients in general. However, they did not believe there were any differences between dying AIDS patients and other dying patients. I: ...except for the precautions, you do the same thing when they are in that stage [dying] . . . Another frustration identified was feeling powerless to act as the patient's advocate. When one informant disagreed with the treatment plan on behalf of her patient she felt she had no power to enforce her patient's wishes. I: You know the drugs these guys are on is just incredible. . I remember reading something about the interactions of this drug with that drug and i t causes low platelets and watch out for internal bleeding. . .This one guy had a constant stomach ache and he was on a morphine d r i p . . . I said to the doctor why don't you stop this drug and let 's see i f his stomach ache wi l l go away and he looked at me and said but h e ' l l probably die without i t . And 81 I said well he's dying anyways why does he have to suffer. And you know he just said he needs i t . . . I know he didn't discontinue i t because he was being used as a guinea pig for this drug that was experimental you know...I tried talking to [name] saying a l l this guy wants is his stomach ache to go away. That was his pr ior i ty to get this drug stopped. R: Uhuh, that must have been upsett ing. . . I: It certainly was...I remember thinking about him on my days of f . . .Thinking please die before I come back. I--I [sic] just couldn't face his suffering any longer...When I did get back nothing had changed... He died about two weeks later s t i l l having a constant stomach ache. What a way to go. And I think what else could I have done? Maybe just not give him i t [drug] then get into trouble or something. It was frustrating when patients' wishes were ignored and added to the stress of caring for them. I: . . . t h i s patient was in the terminal stage and they made him a slow code. R: A slow code? I: Yeah, he wanted to be a code but the doctors 82 made him a slow code. Which I thought was not very nice. . .And he was depressed about being a no code and he didn't want to be a no code . . .Ethica l ly i t bothered me and I'd never heard of i t before . . . I t was explained to me by a nurse who said when he codes walk slowly to the phone and c a l l the doctor. Now he wanted to be a code and he had told me that he was quite shocked when they mentioned code status with him. He said no I want to be a code. . . I t was decided between the doctors and nurses that he would be a slow code. . . I f i t had ever gone to court they wouldn't have had a legal leg to stand on . . . I had already made my mind up that i f he did code I wasn't going to walk slowly. I was going to c a l l a code . . .A l so . . . th i s guy wanted to be coded so at least go through the motions. I mean come on, we've coded people before who have had one leg in the grave because the doctor didn't want to make that dec i s ion . . . I mean he was s t i l l young. Twenty-nine years old and he s t i l l had his mind intact. Increased stress resulted when informants' beliefs about how the AIDS patients should be treated differed from those of the physicians. The use of experimental 83 drugs and whether or not to resuscitate these patients are controversial topics. Caring for dying AIDS patients, homophobia and fear of contracting AIDS, were the three internal stressors. The complexity of caring for these patients was not limited to these stressors, there were additional factors that caused stress. External Stressors External stressors were factors associated with the informants' experiences that caused stress. They were also feelings related to caring for these patients. Patient variables and societal views were identified as the two external stressors. Patient variables. Patient variables was another stressor that caused the informants' experiences to be stressful . These variables were identified as the patient's high risk group and stage of i l lness . For example, caring for a homosexual patient with AIDS was stressful , but caring for IV drug abusers and prostitutes was described as even more stressful . Although prostitutes are not considered a high risk group, they are frequently IV drug abusers as are their sexual partners. There was intense animosity expressed towards these patients who 84 were believed to be d irect ly responsible for contracting AIDS. I: . . . . I find i t ' s worse i f they're street people. R: Worse? Meaning what? Harder to care for them is tha t . . . ? I: Yeah, well , i t ' s much much worse [sic] to have to care for the druggies. They l i e , cheat, w i l l do anything for their dope so I don't part icularly l ike to care for them. We had one who was a cr imina l . . .Wel l , he didn't have f u l l blown AIDS but was HIV positive and he knew this . [He] kept coming in for bloody stab wounds because he was always f ighting. . .He knew how to prevent i t . He just didn't care. That's what most of them are l i k e . They have no concern for human l i f e not even their own. They have got to be the worst. And I say tough beans to you. It's your own fault . R: Have you ever cared for people who are IV drug abusers? I: Yeah, a few, and I have problems not thinking that they deserved his or her fate. And also the same i f i t was a prostitute of either sex. These people know how i t ' s being transmitted and can 85 prevent themselves from getting i t i f they want. But generally most gay men are not promiscuous and don't deserve this death sentence... But these ones, we11. .. L i t t l e empathy was expressed for these patients. I: . . . i t ' s their own fault . It 's rea l ly their own fault . They run around doing drugs and they don't care. They s teal . If they have to, they'd steal from their own mothers, i f they could. It's their ant i - soc ia l acts, you know. And vhen ve get them i t ' s a nightmare...'cause i f you don't drug them into a coma they get vicious and dangerous. R: Do you mean they're . . .? I: Yeah, they're in withdrawal. And...then you have to be extra careful with the i s o l a t i o n . . . They're the worst of them, these guys real ly are. Of a l l the AIDS patients I've had they take the cake. I worked my buns off with this one guy and never again. Next time a drug crazed AIDS guy comes in that's i t . I won't take him. It's too hard. Nope, I wi l l refuse the assignment. I don't care. R: So would you refuse [to care) for every one of these cl ients even i f they didn't have AIDS o r . . . ? 86 I: Well yes, but especially i f they had AIDS. Definitely i f they had AIDS and were doing dope. IV drug use is a deviant subculture where there is a unique set of values, roles, and status-allocation rules (Johnson, 1973). Most members of conventional society have great d i f f i cu l ty imagining themselves or anyone else injecting drugs and also doing the i l l ega l ac t iv i t i es to get the drugs (Des Jar la i s , Friedman, & Strug, 1986). There is also l i t t l e empathy expressed for these individuals and they are often objects of fear, mistrust, hos t i l i ty , scorn and, to a limited extent, pity (Des J a r l a i s , Friedman, & Strug / 1986). One informant expressed his preference to care for homosexual patients rather than IV drug abusers. I: . . .honestly, we've seen patients who haven't had a bath for six months. The street AIDS people I c a l l them. And you know, then you get somebody l ike th is , who's gay with AIDS and, you know, are (sic! very good about their hygiene and things l ike that . . .You see the contrast, and say oh these people are so clean! I'd love to work with them! I'd rather work with them! Prejudicial attitudes were also expressed towards Immigrants with AIDS. 87 I: . . . de f in i t e ly I believe very strongly that a l l immigrants should be tes ted . . . I f they're posit ive, they shouldn't be allowed in because of the expense this government is putting out is r idiculous. R: Have you had any immigrants with AIDS? I: I've had a couple, yeah,. . .and I mean I'm not saying that they are coming here for treatment, they may not know before they emigrated... It causes problems i f you don't understand the language. R: Is i t the different culture tha t . . . ? I: Yeah that, and they don't speak English so that makes i t worse trying to care for them. If you're trying to figure out what they're saying and teaching them about the precautions i t ' s a l l very time-consuming. You know we have l i t t l e enough time as i t i s . Negative attitudes towards these patients made i t more stressful to care for them. Informants expressed l i t t l e empathy for immigrant patients. They fe l t compassion for the innocent victims of AIDS such as, those patients who unknowingly became infected by a sexual partner or contaminated blood transfusion. I: . . . there have been a few where i t was, much harder for me to deal with I t . . .Her circumstances 88 were quite cruel . She was exposed to the virus because i t was brought home by her husband, who had never confessed his bisexuality, i f there is such a thing.. .Therefore she contracted i t . So, that made the di f ference. . . I: . . . f o r those people I have a l l the compassion. I real ly feel sorry for them...and this is not nice to say, but I feel sorrier for them than I do for the IV drug abusers who have brought i t upon themselves and the prostitutes. I: . . . I know cases where the wife wasn't told due to the rights of the patient. To me, that's the biggest sin in the world...The wife was told her husband died of cancer because he didn't want her to know and she has two young children, you know. That's horrible! I'm a firm believer that i f you have AIDS, I'm sorry but the world has to know...I cried for that woman. You know, I thought i t was such a tragedy to not t e l l her. My God!.. .and I real ly fe l t for her i t could happen to me, to you, we just don't know... 89 These patients were viewed as not responsible for contracting AIDS and some of the informants identified with the wives who contracted AIDS from their husbands. Informants believed these patients required more emotional support and, therefore, more time. I: . . . t h i s woman got i t from a blood transfusion from surgery. . . It was sad. . . I fe l t she needed more of my time, you know, to express her anger and feelings, and give her some support. Not that they a l l don't need i t , but she I think was one of the f i r s t women to get i t . . . I found i t more upsetting, so I tr ied to spend more time with her. Informants also described different stages of the i l lness when these patients required more of their time. This is the second patient variable that resulted in stress. The trajectories of diseases are individualized (Strauss et a l . , 1984). The trajectory of AIDS is also very individualized depending upon the opportunistic infections the patients develop. People who are i n i t i a l l y diagnosed as HIV positive vary with respect to the time at which they wi l l develop an opportunistic infection or full-blown AIDS. Patients with AIDS who were s t i l l re lat ive ly healthy were seen 90 as less stressful to care for than those who were acutely i l l and required constant nursing care. I: I don't mind i f they can do their own am care and are getting better. If they've had PCP and are almost recovered then i t ' s not as bad . . . I: It's easier when they're not real ly s i ck . . .but when they get to the end than i t ' s more t r a g i c . . . Patients with AIDS who had chronic diarrhea or dementia were viewed as more stressful to care for because they required more nursing time. I: . . .They can have continuous diarrhea or dementia...and you constantly have to take care of them and watch that they don't disturb anything or pull i t out, [ s ic ] , especially i f they are demented. And sometimes...we used to have quite a few whose lungs would co l lapse . . . I: The diarrhea and the dementia have got to be the two worst curses. Everything else I can deal w i t h . . . i f people come in with PCP their f i r s t time, and this is going to sound very sad, but i t can be a positive experience for them. Because they come in and they're extremely sick, in most cases, and 91 they do better and they feel good when they leave. We feel better too, i t ' s that [diarrhea] and the dementia that make you work. The informants' belief that these patients required more time and attention conflicted with their feeling that they didn't have enough time to support them. I: We are, as you are aware of, short staffed. Not a l l of the time, but often enough and what I'd l ike to do for these guys I just can't. It's hard enough just doing the basics for your assignment let alone spend time with them...and I'd l ike to give them the l i t t l e extras 'cause they need i t , especially those whose family has dumped them. Peeling unable to offer support and provide the "extras" to these patients added to the stress of caring for them. Stress was also increased when co-workers were unsupportive due to their own fears and/or homophobia. Societal views. This external stressor describes the views of individuals with whom the informants associate either at work or at home. These views include those of their co-workers, the patients' families and friends, and the informants' families and friends. Media 92 reporting about AIDS also affected the informants' experiences and were identified as part of this stressor. Informants felt their stress was increased when they had to deal with negative views about patients with AIDS. Co-workers who were afraid and/or homophobic made the work environment more stressful for the informants. Some informants fe l t i t was necessary to help co-workers to ensure these patients received appropriate care, thus increasing their own workload. I: . . . I 've seen many [co-workers 1 who were anti-gay and were mean with the patients, being, l ike , real ly rough. You know pulling them here and pulling them there. Being slow giving them their meds, that kind of stuff. R: Oh no! I: Yeah, and this one guy I fe l t sorry for him. He was dying and was incontinent and well, his nurse wasn't too kind with him...So I helped her out whenever I could just to make sure he was being nursed proper ly . . .L ike , I would t e l l her when he needed to be changed and i f she was too slow or was taking too much time I'd do i t myself. Other informants also indicated their workload increased when co-workers refused to help with the AIDS patients. The next excerpt is from an Informant talking about a float nurse who came to help out on the ward. I: . . .She was useless, completely useless. We f ina l ly sent her away...The things she could do l ike . . . f eed a patient she wouldn't do because she was scared and homophobic... We ended up shortening our breaks just to get finished on time. Another informant described her experience. I: They gave me two patients, him and a CVA and they ended up caring for the old guy and I ended up giving him [AIDS patient] total care. He needed i t ! He looked neglected, I fe l t , by the nurses there. R: How was he neglected? I: Basic care. Just basic care. He was a l l o i ly and greasy. His hair was a spider's nest and so umm he [had] no l i t t l e things in his room you know l i t t l e pictures and stuff. He was getting his medications and stuff, but everytime a nurse went into his room she would put on a gown, gloves, mask, and goggles. You know i t got to be a l i t t l e 94 r i d i c u l o u s , because I just went in with my uniform because he wasn't coughing or bleeding or anything l i k e that . R: So how d id that make you feel? I: I found i t upset t ing . I t ' s hard enough to care for these pat ients without having to deal with other nurses. I mean, I think i f we have to work with people l i k e that and, I .often wonder how much of his care or lack of care was due to his d iagnos i s , or due to him being gay as w e l l , you often wonder. . . I think that a lo t of that s o c i a l stigma i s present from the nurses. But i t ' s so subtle they aren ' t aware of i t or don't acknowledge i t . I mean pat ients with h e p a t i t i s aren ' t viewed with the same negative a t t i tudes or paranoia. I t ' s just that there i s t h i s stigma attached to them, sometimes i t ' s not so subt le . This one I was t e l l i n g you about was d i r t y , r e a l l y d i r t y , l i k e he hadn't had a good bath in a month a n d . . . t h e y d i d n ' t acknowledge him. They just went in and at arms lengths hiked him up in bed. I got so pissed off I wanted to scream just get the h e l l out of here I ' l l do i t myself 1 Anger was a common fee l ing expressed by the informants 95 towards co -workers who were a f r a i d or homophobic. One in formant d e s c r i b e d how the presence of one nurse made everyone on the ward " u p t i g h t and on edge ." I : We have one we a v o i d l i k e the p l a g u e . [ laughs] She ' s an o l d e r nurse who o n l y works c a s u a l , but she i s r e a l l y o l d - f a s h i o n e d and d o e s n ' t l i k e g a y s . She ' s always p r e a c h i n g about how i t ' s wrong and a l l t h a t s t u f f . . . W e d o n ' t l i k e i t when she comes, we u s u a l l y e i t h e r t r y to f i n d some m e n i a l t a s k s for her to d o , something as f a r away from these guys as p o s s i b l e , or we send her away . . .We c a n ' t s t a n d h e r . I t makes everyone b i t c h y . J u s t s e e i n g her makes us a l l u p t i g h t and on edge. S t i g m a t i z a t i o n by co -workers was not t o l e r a t e d as they were expected to c a r e for a l l p a t i e n t s i n the same manner r e g a r d l e s s of t h e i r d i s e a s e . I t i s i n t e r e s t i n g to note t h a t t h i s behav iour was not a c c e p t a b l e f o r c o - w o r k e r s , ye t a t the same t ime the IV drug a b u s e r s , p r o s t i t u t e s , and immigrants w i t h AIDS were s t i g m a t i z e d by the same i n f o r m a n t s . S t i g m a t i z a t i o n by the p a t i e n t s ' f a m i l i e s and f r i e n d s was a l s o hard to d e a l w i t h . I t a l s o p l a c e d the in formants i n a compromis ing p o s i t i o n when the f a m i l y was unaware of the d i a g n o s i s . 96 I : . . . t r y i n g t o h e l p t h a t p e r s o n cope or j u s t w a t c h i n g them s t r u g g l e w i t h the s t i g m a of the d i s e a s e . . . T h e r e j e c t i o n from t h e i r f a m i l i e s and f r i e n d s , and a l s o t h e s u b c o n s c i o u s r e j e c t i o n from some of the n u r s e s , t h a t ' s one of the h a r d e s t t h i n g s t o d e a l w i t h . . . I : . . . I t was a weekend and t h i s guy's mother c o r n e r e d me and s a i d come on what's wrong w i t h him? You're h i s n u r s e , no one i s t e l l i n g me a n y t h i n g . And he had t o l d me how t h e y were devout C a t h o l i c s and preached how t h e d e v i l was i n gays, and how b i z a r r e eh? Anyways, she was a l a r g e woman t o o , i t was i n t h e u t i l i t y room, and i n my mind I heard him s a y i n g t h i s . So i n my most p r o f e s s i o n a l v o i c e I s a i d , w e l l I'm s o r r y but I can not r e l e a s e t h a t i n f o r m a t i o n i t i s c o n f i d e n t i a l and you need t o ask your son about i t . W e l l [ l a u g h s ] , she d i d n ' t buy t h a t . And so I f i n a l l y s a i d much l o u d e r , I'm s o r r y I have no a u t h o r i t y t o t e l l you. So she knew she'd get n o t h i n g out of me, so she went back t o h i s r o o m . . . I t ' s an awkward p o s i t i o n [ t o ] be i n . . . I t makes i t worse when the f a m i l y d o e sn't know, but 97 sometimes i t ' s j u s t as bad i f they do, e s p e c i a l l y when they r e j e c t them. We had one c l i e n t whose f a t h e r r e f u s e d to see him because of i t . He d i d n ' t even know h i s son was gay and so I guess when he found out he had AIDS he put two and two together. But, l i k e , t h a t ' s what I'm s a y i n g , i t ' s a l l hard. E v e r y t h i n g about t h i s d i s e a s e i s hard. Other p a t i e n t s sometimes r e a c t e d n e g a t i v e l y to the AIDS p a t i e n t s . I: Oh God, i f you get a middle-aged p a t i e n t t h a t f i n d s out what the pink s t i c k e r on the door means you're up the creek. They don't want those people i n the h o s p i t a l and those people i n the smoking lounge and they don't want any of those bloody pink s t i c k e r s anywhere near t h e i r room. They can be extremely unreasonable about i t . R: How do the other p a t i e n t s on the ward f e e l about them? I: I think they're a f r a i d . R: A f r a i d ? I: Yeah, they're a f r a i d . I t h i n k t h a t o v e r a l l they're a f r a i d because they're a l s o i l l and compromised. I don't t h i n k they're happy to share 98 the ward. They thin k t h e y ' l l get i t and a l s o some of them are o l d e r people who are n ' t v e r y l i b e r a l minded, you know. Informants a l s o discovered- t h a t not o n l y were the p a t i e n t s with AIDS s t i g m a t i z e d but they were as w e l l . I: ...There was t h i s one time we had, oh some kind of t h i n g a t [names h o s p i t a l ] where I don't know what i t s i n t e n t was, maybe to get the whole h o s p i t a l t o g e t h e r . Anyways, I'm m i l l i n g about and c h a t t i n g here and there with some of the people I know and I stopped and introduced myself to t h i s one nurse and she s a i d where do you work and I s a i d I work on [ward]. She goes up there where a l l the AIDS p a t i e n t s are [v o i c e r a i s e d ] and I f e l t l i k e oh no what was wrong with t h a t f l o o r . . . In a d d i t i o n to p a t i e n t s ' f a m i l i e s and co-workers, informants' f a m i l y members who d i d not understand AIDS or were homophobic were a source of s t r e s s . I: ...My mother i s q u i t e h y s t e r i c a l . She's worried about i t . . . t h e f i n g e r p r i c k s . She's worried you know. Of course on T.V. you see a l l the shows and she s a i d what happens i f you p r i c k your f i n g e r ? And I s a i d w e l l , I r e a l l y hope I don't, but i f I do, w e l l , I do. Then I s a i d even 99 i f you prick your finger i t ' s not a 100% chance that you ' l l get AIDS. Oh, she says, i f you pricked your finger don't t e l l me because I would die. She would because she's h y s t e r i c a l . . . Yeah, she doesn't l ike i t and wants me to transfer to the babies. I said mother do you realize there are babies with AIDS too? Oh, well, when do you think you can q u i t ? . . . I: My husband wants me to leave. He says he can't stand worrying about me. He wants me to either go somewhere else or stop nursing altogether. . . I might just have to, to keep the peace, you know. He keeps at me about i t . . . Pressure from nurses' families to stop working with AIDS patients has been reported in the l iterature (Blumenfield et a l . , 1987; Bolle, 1988; Haines, 1987; Henderson, 1984; Simmons-Ailing, 1984). Sometimes the informants' friends were unable to understand why they would want to work with AIDS patients. I: . . .And she says, I don't know why you put yourself in that danger. You can work anywhere you want. Why work with them?...Why not work with other people? 100 Media reporting about AIDS was another stressor identif ied. Sensationalistic and incomplete stories caused anxiety in the informants. I: . . .and what they print in the newspaper is sometimes very disturbing. Like, they have the big headlines saying nurse got AIDS from patient now on deathbed, tlaughs]...You read i t through and think oh, well , that's impossible but then again this is a well known paper that prints this s tuf f . . .Think of the public, i f i t bothers us, I mean, i t makes me worry.. . I: . . .You have to know exactly, exactly [s ic l every de ta i l . Every part of these stories, the whole. You know more than a layman, you wouldn't realize the difference i f you didn't have a nursing background. But a lot of the reporting is very generalized and they leave out a lot of information which gets you going aga in . . . Reisman (1988, p. 789) states that "the intense public i ty of the disease has served more to heighten awareness and fear than to educate." Informants believed the media was irresponsible at times and were causing much of the anxiety about AIDS. 101 Lack of Emotiona1 Support In t h i s study, informants r e p o r t e d a lack of emotional support t o help them cope with c a r i n g f o r p a t i e n t s with AIDS. T h i s form of suppport was d e s c r i b e d as e s s e n t i a l . Although other forms were r e a d i l y a v a i l a b l e , such as e d u c a t i o n a l , they were not c o n s i d e r e d as important. The informants expected n u r s i n g a d m i n i s t r a t i o n to provide support yet a t the same time they d i d not want to t a l k t o them f o r f e a r of r e p e r c u s s i o n s . They were a l s o r e l u c t a n t to t a l k w i t h t h e i r co-workers because they worried about c o n f i d e n t i a l i t y and f e l t t h e i r r e l a t i o n s h i p s would change i f they spoke f r e e l y . Informants d i d not t u r n to t h e i r f a m i l y or f r i e n d s f o r support unless they were nurses. The i d e a l support person was d e s c r i b e d as a nurse who was not a s s o c i a t e d with t h e i r agency. The f o l l o w i n g e x c e r p t s i l l u s t r a t e the informants' f e e l i n g s about t h e i r need f o r emotional support. I: ...I a p p r e c i a t e the b i n d e r s with a l l the AIDS i n f o r m a t i o n and [name] i s very knowledgeable about AIDS so we can ask her about a n y t h i n g . But t h a t ' s something we can do on our own, i t ' s the under-s t a n d i n g t h a t ' s so c r u c i a l , you know. I t ' s being aware of how we're doing and r e c o g n i z i n g when we've 102 had i t . . . U s u a l l y people leave by that time 'cause i t goes unnoticed...Anyways, i t ' s the support we need, that's the most important thing. I: Thank you very much for a l l the books and papers but give me a pat on the back once in awhile. Some support goes a long way. Informants were satisf ied with the way the educational information was handled. They identified resource people they could approach and ask questions. However, they repeatedly stated they needed emotional support while caring for these patients. Social support as defined by Kahn (1979) is an interpersonal transaction that includes one or more of the following: the expression of positive affect for one person or another (caring, love, respect); the affirmation or endorsement of another's behaviours, perceptions or expressed views (validation of actions or statements); and the giving of symbolic or material aid to another (money, tangible items, information). Cobb (1976) identified i t as a "person's belief that he [she] is cared for, esteemed, and belongs to a network" (p. 300). Included in this network would be relat ives , friends, neighbours, co-workers, or professionals paid for their services. 103 Emotional support is viewed as part of social support. It provides a sense of belonging which enhances self-esteem (Davidson, 1987). In this study, informants described i t as being understood and knowing that others were concerned for one's well-being. R: . . .You said that not only did your cl ients need emotional support but so do you. I believe you said we as in nurses. Do you reca l l that? I: Uhuh, we give i t to everyone else but not ourselves...We don't get i t in re turn . . . I think with these patients we're getting i t ' s high time we got some in return.. .And we're not being understood. They don't understand what i t ' s l ike for us. . .And we need them to say yes, I understand what you're going through and knowing that they were concerned for our well-being our welfare . . . I 'd say that's the most important thing we need. Make sure you write that down, [ laughs]. . . Other informants also identified emotional support as being important. R: You were saying that i t ' s hard to cope, to deal with everything. What did you. . .? 104 I: Well, i t wouldn't be so bad i f they took the time to see how we're doing.. .Give us some recognition and try to realize how i t affects u s . . . I: I personally feel the support is not adequate. That's one area I'd say we're having a lot of problems. Yes, we get a lot on the disease. We need that too, but I mean as I've said before this is very stressful to deal with and I know I speak for the others too. That's one very important area. It's something that's , I don't know, overlooked and not considered. Maybe they don't want to get personally involved or whatever, but to me i t ' s very important. It's crucia l for a l l of us nurses, or for that matter, a l l nurses working with them. We need a l l the support in the world. Emotional support was not only seen as essential but i t was expected from nursing administration. This was considered part of their role . I: . . .They're [nursing administration] the ones who should be supporting us. They're the ones who need to take a good hard look at t h i s . . . 105 R: So what kind of support do you need? I: Well, the pats on the back saying you're doing a fine job or umra do you need any help? Hov are you doing? Are you having any problems caring for these patients? Hov are you? You knov, just hov are you hanging in there? Are these guys getting to you? Just questions l ike that. R: Someone said i t vas the emotional support they needed is this vhat you mean? I: Exactly, that's i t . . . Informants expected their nursing administration to provide emotional support in the form of understanding and acknowledgement of hov stressful i t is to care for patients vith AIDS. I: . . .And they have- a l l these books and this paper vork and these meetings every week. The AIDS committee, the blah, blah, blah, and they sort of come back and say you're having trouble? It's a l l been planned out. You can't haveany problems and you knov vhen is the last time you1ve cleaned his bum?...They don't have any idea vhat i t ' s l i k e . They're not standing there vhen they die. They're not there. I mean, I appreciate vhat they're doing. They're dealing from the book aspect...They 106 look at you as i f to say well i t shouldn't be a problem l i k e there's something wrong with you. Wel l , there are problems you know, these gloves r i p . I t ' s s t r e s s f u l ! These guys a l l d i e . Our co-workers d i e ! We're scared God damn i t ! [voice ra i sed ]. There was anger and h o s t i l i t y d irec ted towards nursing admin i s t ra t ion . I: . . . y o u can' t ta lk to them about your f e e l i n g s . . . It would be in your f i l e . You'd get a bad e v a l u a t i o n . . . Some informants described an example of support which they believed was inappropriate . I: . . . A l l the nurses are i n t e l l i g e n t people. We a l l know we need to v e n t i l a t e . I t ' s very s t r e s s f u l , we have to ta lk about i t but yet we fee l forced to go and ta lk to th i s p s y c h i a t r i s t l i k e there 's no choice . We're a l l s i ck about i t ! What does he know about nursing? And then there's the psych t h i n g , the stigma about seeing one. I : He's not a nurse to s t a r t with so we lose that perspective and he works here or i s a consultant or something. You don't want to ta lk in front of 107 everyone. I mean i f you do you can't get too personal and sometimes you want complete privacy from your employer. You don't want them to know everything about you either. I mean, i ts rea l ly inappropriate. . . Informants were also reluctant to talk with their co-workers. One experienced informant believed i t would set a bad example i f she discussed how she was having a hard time. I: . . . I wouldn't talk to one of the female nurses at work and say well , gee I'm having a rea l ly hard time with this mainly because I'm one of the senior g i r l s on the ward and I figure that they figure, well , i f she can't handle i t what am I going to do! [voice raised). It sets a bad example... The informants were concerned about confidential ity and how their relationships would change i f they spoke freely. I: . . . i t could be damaging i f they [co-workers] knew that you've said a l l t h i s . . . I t would be d i f f i c u l t to work with them You'd be labelled. Feeling there was no emotional support available made some informants suppress their true feelings which added to the stress. 108 I: ...Who can we talk to? I mean rea l ly , think about i t . Who is there that would understand without being judgemental and doesn't work here?...We just have to ignore i t for now... Pew informants received emotional support from their families and friends. Family members who had d i f f i cu l t i e s with homosexuality or the disease i t se l f were unable to provide this support. I: .. .We're a very Roman Catholic family and I certainly don't t e l l them I have gay friends or care for gay people, and as a consequence have AIDS.. .I don't emphasize i t here, they feel uncomfortable with i t . . . I: . . .My mother says I'm doing God's work. I think she sort of sees me as Jesus working with the lepers, (laughs] My mother is a devout Catho l i c . . . My father doesn't pay any attention. He ignores me when I talk about i t or anyone else. When I mention anything about AIDS to them you can see their eyes cloud over and they just don't want to hear about i t . They don't l ike this s t u f f . . . Informants who recognized their families were uncomfortable with this topic did not use them as 109 support persons. Even those family members who were comfortable discussing AIDS, were not used as support persons because they could not understand what i t was l ike from a nursing perspective. I: . . .My husband doesn't deal with that situation very often. It 's rea l ly hard to talk to him, you know. He's not homophobic or anything he just doesn't understand. I say, well you know, I'm real ly upset about this . I have told him that and said this is getting hard for me now. But, l ike I say, my family and my husband wouldn't, they don't understand. They don't have to deal with that sort of t h i n g . . . I: . . .They [family] don't mind i f I discuss i t . They're quite l i b e r a l , but I don't talk that much to them about it.. .Anyways, 'cause they don't understand i t . They're not nurses, so they can't understand what I'm talking about. . . Informants who usually received emotional support from their families realized they would not receive i t in relation to caring for patients with AIDS. Family members who were uncomfortable with AIDS and even those who were not, could not understand what i t was 110 l ike . Only another nurse could truly understand. Informants vho had family members or friends vho vere nurses turned to them for support. I: My mom is a nurse and is very open thank God. R: Is she a support person for you? I: Yes she i s . Even though she l ives 100 miles up north ve s t i l l vrite to each other.. .My mom is rea l ly great. She does a lot of therapeutic l istening. She says don't ask me for help because I don't have anything material vise b u t . . . I can talk to her about the AIDS patients because she is a nurse and can understand. Only a nurse can real ly understand vhat another nurse is going through.. . I: . . .We're both nurses (friend] and can talk to each other about i t . . . Literature on social support and occupational stress indicate that emotional support can buffer or mediate stress (Davidson, 1987; Dean & L i n , 1977; Kahn, 1979; Riegel, 1989). One study done by Constable and Russell (1986) revealed that supervisory support is the most meaningful to reduce stress at vork. Burnout l iterature also identified i t as a I l l factor to decrease vulnerabil i ty to burnout (Hare, Pratt , & Andrews, 1988). Peeling supported helps individuals to cope with stress. Coping Strategies Coping is interrelated with the concept of stress. Edwards' (1988) review of coping l i terature revealed deficiencies in the meaning of coping and the mechanisms by which i t influences stress and well-being. He states: We s t i l l know re lat ive ly l i t t l e about the specific coping strategies individuals use in dealing with stress, the process by which individuals select and implement these strategies, or the mechanisms by which coping affects stress and individual well being (p. 233). There is also limited nursing l i terature about specific coping strategies nurses use to deal with their stress. A review of l i terature on stress in ICU and non-ICU settings revealed a lack of research which c learly identified measures of stress and coping according to the nurses' perceptions (Gentry & Parkes, 1982). Lack of research in this area is partly due to problems in defining stress and coping. Dewe (1987) 112 notes that the tradit ional definitions of stress emphasize either the stimulus or the response which focuses on the components of the relationship rather than the relationship i t s e l f . His study investigated and described the strategies nurses said they used to cope with work stress. His findings revealed six coping strategies; one was identified as a direct action strategy or problem-oriented behaviour and the other five were pal l iat ive strategies. Direct action strategies are behaviours that can change the stressful situation i t s e l f . Pal l iat ive strategies are temporary measures aimed at lessening the impact of the stress. Dewe (1987) believed the greater number of pal l iat ive strategies used were due not only to the differences in personalities of the nurses, but also to the nature of nursing where few direct action strategies can be used in hospital settings. Clarke (1984) identified other coping strategies as indirect where techniques and/or act iv i t ies are learned. In this study, informants described both indirect and pal l iat ive coping strategies. 113 Usual Coping Strategies To cope with their- overall experiences caring for these patients, the informants rel ied upon the usual coping strategies which relieved stress for them. These included physical ac t iv i t i e s ; relaxation ac t iv i t i e s ; and talking with others. Physical ac t iv i t i e s . Directing the energy outward has been described as one method to decrease stress (Flaskerud, 1987; Scully, 1980). Most of the informants used some form of physical ac t iv i ty as a coping strategy. R: You mentioned last time about the emotional drain you feel from these c l ients . How do you deal with this? I: Exercise, I paint, I l i s ten to my music. It does affect my moods, I mean, I have to be so caring and intense at work so that when I'm at home i t does come out. But as long as I exercise and keep busy I can prevent myself from becoming depressed or burned out, but i t ' s hard. It's rea l ly h a r d . . . I: . . .You know, I keep my stress levels down by exercising, v i s i t ing friends. I guess for me when 114 i t ' s real ly bad, say after one of them has died, I ' l l go hit some bal l s , go to the gym, and play raquetball with some friends, meditate, things l ike that. Just try not to think about work. Other less strenuous act iv i t i es were also used to cope with stress. Relaxation ac t iv i t i e s . Some informants used relaxation act iv i t i es to decrease their stress. I: . . .we l l stress rel ieving things for me are well , I ' l l snooze, or just s i t , I used to do yoga, calming type of things. I: . . . I enjoy taking hot baths or just finding a good book to read, things l ike [that]. Or else I can phone my mom and talk to her, well, not real ly talk to her about these patients [laughs]. My goodness she'd have a heart attack. . .but I can talk to her and just say I had a bad day at work. So she's good for that. For this informant, she also used talking as a usual coping strategy. This was the most common one. 115 Talking with others. Talking with others was seen as an easy and e f f e c t i v e coping strategy. R: ...What do you usually do to cope with t h i s stress? I: Oh I can talk to anyone in my family, l i k e my s i s t e r or my mother. They're r e a l l y great, you can talk to them about just about anything. So, they're the people I go to f i r s t i f I need a shoulder to cry on...There was one time though, I was ta l k i n g about these guys and got them so depressed i t didn't help me much. R: Can you explain why they...? I: ...Like they don't want to hear about a l l those homosexual men. A l l those homosexuals a f f l i c t e d with that that [ s i c ] disease [mimics mother's voice] so, I don't, I just don't talk about these AIDS people. It doesn't do me any good getting them a l l upset. It makes me more stressed, so we leave that part of my work out. They don't understand i t . . . Some informants whose usual coping strategy was to talk with their families or friends, r e a l i z e d i t might not be e f f e c t i v e i f they needed to talk about stress 116 related to caring for AIDS patients. For these times, the informants would seek out other nurses who could understand them. I: . . . I made one good friend at work when I started and we can talk about this . She knows what I mean and I know what she means...We understand each other. That's who I go t o . . . Developing friendships with understanding co-workers and sharing feelings were considered to be effective in decreasing stress. However, the specific stressors related to caring for patients with AIDS required different coping strategies. These were identified as: (1) rationalization; (2) knowledge-seeking; (3) withdrawal; and (4) involvement. Coping Strategies Related To Internal and External Stressors Rat i onali zat i on• Rationalization was described as thinking logical ly about AIDS. Mentally reviewing the facts about the disease was used to decrease the informants' fear. I: . . .You use your rational side to cope with the fear. What I mean by this is that I think about a l l the facts about this disease, l ike the 117 miniscule r i sk . I just keep reminding myself about that. R: Uhuh, I see, so you think of the facts about AIDS? I: Yeah, just concentrate on what you know about i t . . . I t doesn't completely r id me of fear but i t helps to lessen the anxiety. I can at least get through my shifts without looking panic stricken. [laughs] The rational side was considered the nursing part of the informants where logic ruled over their emotions. For this informant, rationalization was effective in rel ieving some of the anxiety but not a l l the fear. Other informants also used this coping strategy to deal with their fear. I: . . .Yes I am scared, but i t ' s not that easy. Sometimes this (fear] is so. . .out of your control. Like, we just don't know what we're up against . . . R: Uhuh, and so do you feel l ike you can't control your fear? Is that what you're saying? I: Yes, and I can s i t here and t e l l you a l l about i t . I can recite everything about i t 'cause we are made sure we a l l know a l l about i t . [ s ic l But I can hear myself saying a l l this in my mind. . . 118 R: Oh, so for you you think about it? I: Right, I can hear [name's] voice in my head l i s t ing the risk to nurses and saying a l l th is . I: . . . I f I know, say I know the night before that I have one of them the next day, then I ' l l try to mentally prepare myself. I just think to myself well I can only get i t i f I'm in contact with blood or body f luids . So, I keep saying that. . .and of course I do a l l the precautions too. But more of the mental reminders of...how i t ' s tranmsitted. I say things l ike that and so then i t keeps me on t r a c k . . . Informants used rationalization as a way to intel lectualize and understand the disease i t s e l f . Reviewing documented facts about AIDS was helpful for some informants to al leviate anxiety but not to completely eliminate the fear. Rationalization was also used by some informants to deal with the frustration of caring for these young patients who were dying. This.coping strategy was used to help them accept death for them. R: What do you do to cope when they do die? I: Well, I think that i f i t ' s going to happen, 119 i t ' s going to happen, you know. I mean as tragic as i t may be, I have to think that this is another thing about the disease and.. .again I look at in that way. It's part of the disease. . .I look at i t r e a l i s t i c a l l y . . . Y o u try to accept i t you know... Rationalization was also used to cope with negative societal views. Some informants who encountered people who were prejudiced against patients with AIDS or homosexuals, would rationalize their behaviour as following their re l ig ion . I: . . . I t ' s [homophobia] real ly only a product of their [co-workers] religious upbringing. They've been brainwashed to be this way. I: . . .My dad is very s t r i c t . He's a devout Catholic and goes to church regularly and he won't change. If the Bible says i t ' s wrong, i t ' s wrong. When the Bible says gays are okay, then h e ' l l say they're okay. . .I guess real ly he's got a case of homophobia... Recognizing homophobia in loved ones was d i f f i c u l t . It was easier to attribute this attitude to the person's re l ig ion rather than to the individual person. The previous informant continued: 120 I: . . . I t ' s the rel igion you knov he vas brought up to believe that i t vas wrong and i t ' s not him, you knov. Really, i t ' s not him. It's vhat he's been taught. . . Not a l l informants rationalized these behaviours as according to the person's re l ig ion . Some informants expressed animosity tovards anyone vho vas homophobic describing them as "insensitive" and "ignorant." Knovledge-seeking. Knowledge-seeking vas described as looking for nev information in order to increase one's understanding. One of the informants vho vas uncomfortable vith her homophobia described hov she became more accepting tovards homosexuals. R: You said last time hov you've come around to be more accepting tovards homosexualIs] in general. Can you t e l l me hov you did that? I: I vent to this psychiatr ist . . .and I asked him about i t . Like, vhy are they that vay? He talked to me about i t and gave me some good art ic les to read and he wasn't judgemental, not at a l l . . . H e just told me what he knew about i t and that they rea l ly don't know why they're this way. It may be genetics, i t may be environment, who knows? 121 It was hard for this informant to make the i n i t i a l decision to talk with this psychiatrist . She was concerned about the stigma of seeing a psychiatrist and having others think of her as mentally i l l . After learning more about homosexuality, she felt more comfortable caring for patients with AIDS. Knowledge-seeking was also used when informants were concerned about sensationalistic ar t i c l e s . I: ...These stories they have in the media are enough to drive you to drink. They t e l l you something that might affect you, but they don't t e l l the whole s t o r y . . . A l l these health care workers who were supposed to get i t . I read that one, good grief 1 R: You found i t stressful when you read about the health care workers? I: Yeah, i t was scary. They mention this large number of people who were nurses and lab techs and some other people in the hospital and how they were monitoring them for the AIDS virus. It was only half-truths. R: What did i t say? I: Oh, they'd a l l been exposed. I don't remember how, finger stabs I think. Anyways, they were monitoring them to see i f they would develop AIDS 122 and I had to go to the l ibrarian and get him to search i t for me so I could, you know, read the whole research on i t . . . A n d then i t turns out most of them were partners of IV drug users or in some other high risk group. So I went phew, thank goodness I found that out. . .But i t wasn't in those cheap supermarket tab lo ids . . . I t was in a news-paper...But I find you s t i l l have to get i t checked out to make sure i t ' s correct, or you could misinterpret the information. . . l ike in this case where they leave out crucial information. So you have to know, you have to find out . . . Informants sought out additional information on art ic les when they were not sure of their accuracy. Even art ic les from reputable sources were questioned to make sure the informants had a l l the facts. Withdrawal. Informants described withdrawal as distancing themselves from patients with AIDS or avoiding them. This coping strategy was mainly used by the informants who were homophobic. It was also used to cope with the stress caring for patients with AIDS in other high risk groups. The following excerpts were from informants who described themselves as homophobic. 123 I: ...So I did what I was supposed to do with him and was quick about i t . I didn't want to stay too long... I f e l t uncomfortable being there... I: If I can trade my assignment with someone else I ' l l do that. I prefer not working with them...But i f I have no choice I ' l l do i t . . . Being quick or trading assignments was one way these informants p h y s i c a l l y withdrew from the patients with AIDS. The previous informant also described how she psychologically withdraws from these patients. I: ...I know they sometimes want to talk about i t . How they got i t and everything, but I can't relate to that kind of stuff...I'm busy and have things to do...One time I was changing some patient's dressing and he was t a l k i n g and t a l k i n g , yacking away about something or other, and he said something to me that needed an answer and I didn't hear him. I didn't want to hear him... R: Uhuh, why was that? I: I think i t was maybe because I was t i r e d , not t i r e d i n the sense of p h y s i c a l l y t i r e d , but I think more about a l l the hoopla. A l l the ward ever talks about i s the AIDS patients and also because i t ' s 124 not my thing. AIDS patients are not my forte in nursing. I don't want to specialize in i t and so that's why, I guess... Other informants who did not l ike patients who were IV drug abusers, described how they coped with them. I: . . .Oh yes, we get a few like that [heroin addict] and i t ' s an experience let me t e l l you. They're not my favourites . . .This one was ca l l ing a l l the time s i t t ing on the bel l and ringing i t and ringing i t and I'd go in and he'd want some codeine and I'd say i t ' s not time yet. You have to wait for another whatever t i l l i t was the right time and he'd be a ringing some more, so I would just not answer i t any more. I'd leave him be then he'd go to sleep. Informants who did not l ike these AIDS patients would either ignore them or routinely give them sedatives to keep them quiet. The last informant elaborated on how she coped. I: Yeah, they're in withdrawal and are easi ly agitated and so I make sure they get their whatever l ike clockwork. Even reminding the doctors about that, then they don't get a l l c r a z y . . . i t ' s easier to work with them. They sleep most of the time and 125 I don't have to see as much of them.. . i f you don't do that then you have to be extra c a r e f u l . . . Some informants who had d i f f i cu l ty caring for dying AIDS patients would also withdraw from them. One informant who was caring for two dying patients and was to admit another one, had to go home before the end of her shift because she couldn't cope any longer. Another informant who was feeling overly stressed described her thoughts about a dying AIDS patient. I: . . . T h i s guy was on his death bed and had to be turned regularly and i t was late in the afternoon and I'd washed him twice, plus I had a l l my other patients. And i t was time to turn him again and someone reminded me...and I thought oh so what! He can wait! I didn't want to go back in there . . . I must have turned white I was so shocked at what I was thinking 'cause someone said something to me about my face being white. It made me real ize , yes, my time has come I need a break. . . This informant became aware of how much stress she was feeling. In the second interview, she said she was thinking of resigning and was looking for another job. 126 In contrast to withdrawal, the last coping strategy, involvement, resulted in the informants becoming closer to their AIDS patients. Involvement. Involvement was described as sharing personal information or seeing the patients in the informants' non-working hours. Informants used this coping strategy to deal with dying patients or those who were s t i l l re lat ive ly healthy. Frequently, informants who identified with their patients in some way, used this strategy. I: . . .He asked me i f I was gay, which I am.. .It 's something I don't l ike to divulge at work...I don't think i t ' s anybody's business...But we got very close in the sense of sharing, just his emotions...When he died they [family] didn't even come up to the hospital and i t hurt me... This informant continued: I: I have been tested too and so I understand what they're going through and I think I could be next . . . Other informants described how they became involved with their dying AIDS patients. 127 I: ...this one patient was so young, just in his early twenties... I was so devastated when I f i r s t met him. He had just moved here...and had no one. There was no one for him so sometimes I would come in on my days o f f . . . I: I would spend most of my s h i f t with him, just t a l k i n g and t a l k i n g . I'd t e l l him about my family and things... I: ...I do occasionally go into work on my days off to v i s i t some patients, but I r e a l l y t r y to l i m i t that, you know. Because you can get sort of a martyr complex or messiah complex and I don't want to get l i k e that. I think there is a wall inside of me and I w i l l care for someone up to that wall and then i t doesn't go any farther...I only get so close and then I back off and the wall goes up. . . Some informants would.visit t h e i r patients at home after they had been discharged. I: I've done volunteer work with them and v i s i t e d them in their homes...I worry about them when they leave. They're so alone. Many times t h e i r 128 families desert them so I do t h a t . . . i t helps me not to worry. . . One informant became involved with a patient who was infected unknowingly by her bisexual husband. I: I called her at home to see how she was doing and [told her] to drop by and see me... Bolle (1988) discusses one of the problems associated with nurses becoming too closely involved with their patients, especially gay male nurses. She believes they are at risk for over identif ication with them. They may have d i f f i c u l t y maintaining professional boundaries and may perceive themselves as personal friends sharing the same cause. These nurses, therefore, have a higher risk for burnout. Although the informants used involvement as a coping strategy, i t was many times ineffective and caused more stress. Informants would continue to worry about their patients when not at work. One informant described how this caused problems with her family. I: . . . I worried about him and I couldn't eat and I was going to have dinner at my parents but I was thinking he was going to die and so at dinner they said why aren't you e a t i n g . . . ! said I was thinking 129 of one of my AIDS patients who was going to die. Well, they [parents] just flipped out... Coping with the s t r e s s f u l experiences of caring for patients with AIDS can be a monumental task. Although informants r e l i e d on their usual coping strategies, they discovered they needed others to deal with the s p e c i f i c internal and external stressors. Summary Nurses' experiences caring for patients with AIDS were described as s t r e s s f u l . This was the predominant theme that i l l u s t r a t e d what i t was l i k e , for these nurses, to care for AIDS patients. Sources of stress varied for each nurse, but two major categories were i d e n t i f i e d by the researcher. Internal and external stressors were feelings associated with caring for these patients. Internal stressors included: (1) fear of contracting AIDS; (2) homophobia; and (3) caring for dying AIDS patients. The two 'external stressors were patient variables and s o c i e t a l views. In addition to these stressors, a lack of emotional support was reported. Although other means of support, such as educational, were described as availa b l e , emotional support was perceived to be essen t i a l for a l l nurses caring for patients with AIDS. 130 In order to deal with their stressful experiences, the nurses ut i l i zed their usual coping strategies. These included physical ac t iv i t i e s , relaxation ac t iv i t i e s , and talking with others. To cope with the internal and external stressors, the nurses used rat ional izat ion, knowledge-seeking, withdrawal, and involvement. These findings were supported by the l i terature . The discovery of AIDS has added a new stressor for nurses. According to Jenner, Levi , and Houghton (1986) nurses who care for patients with AIDS can expect to experience increased levels of stress. Fear of contracting AIDS, issues in sexuality, exposure to alternate l i f es ty les , and death and dying are some stressors related to caring for patients with AIDS (Bolle, 1988; Christ & Wiener, 1985; Flaskerud, 1987; Simmons-Ailing, 1984). Fear of contracting AIDS is d irect ly related to the fact that the occupational risk to nurses is not zero (Bennett, 1986; Dhundale & Hubbard, 1986; Geis & Ful l er , 1986; Gilraore, 1985; Rubinow, 1984; Simmons-Ailing, 1984). This concern was stated repeatedly throughout this study. Despite the low risk and being knowledgeable about AIDS, nurses were 131 s t i l l afraid. They described their fear as "irrational" and "out of their control." Rubinow (1984) believes that although educational information is provided i t is not actually heard. Issues in sexuality and exposure to alternate l i festyles was also evident in this study. Nurses who described themselves as homophobic found i t even more d i f f i c u l t to care for patients with AIDS. Nurses may feel uncomfortable with homosexuality i f their personal values, cultural backgrounds, and religious ideals are challenged with the psychosocial variables of these patients (Simmons-Ailing, 1984). This was true in this study; the nurses who said they were homophobic associated this attitude with their re l ig ion. Homophobia was also related to the belief that these patients deserved to have AIDS (Kelly et a l . , 1988). Some nurses in this study did express this view. One nurse was able to see these patients in a more sympathetic manner after she found out more information about homosexuality and had increased contact with them. According to Storms (1978), increased contact with homosexuals can dispel false stereotypes and lessen homophobia in some individuals, but i t may also heighten anxiety and increase 132 hos t i l i ty in others. Both behaviours were reported in this study. Exposure to dying patients has been associated with higher levels of burnout (Dames, 1983). Nurses in this study reported increased stress when they cared for many dying AIDS patients. They found i t even more d i f f i c u l t to care for the "second generation" AIDS patients who were the partners of the previous ones who had died. Rubinow (1984) discusses the drain nurses can experience when they encounter these patients dying on a dai ly basis. Literature about the external stressors was not as extensive as l i terature about the internal ones. Some patient variables related to AIDS has been identified as having an impact on nurses who care for these patients (Rubinow, 1984; Simmons-Ailing, 1984). The various high risk groups were viewed differently in this study. IV drug abusers, prostitutes and immigrants were viewed with more hos t i l i ty than homosexual AIDS patients. Des Jarlais and others . (1986) describe how society in general has l i t t l e empathy for this group of people. It seems l ike ly , however unfortunate, that this attitude would cross over into the nursing profession. There was even more 133 empathy expressed for those patients who unknowingly became infected with AIDS. The nurses in this study believed these patients required more emotional support and, therefore, more time. Feeling this added pressure resulted in these nurses experiencing more stress. Another variable related to these patients was their stage of i l lness . Those patients who were s t i l l re lat ive ly healthy were seen as less stressful to care for compared to those who were acutely i l l . The rapid deterioration in patients with AIDS health can over-burden already stressed health care workers (Rubinow, 1984). Societal views towards AIDS can add to the nurses* stress caring for these patients. In this study, nurses reported stigma towards patients with AIDS from other nurses, the patients' families and friends, and other patients. The nurses themselves also felt stigmatized by co-workers. Although there was no evidence of stigma from the nurses' families and friends, they were encouraged to stop caring for these patients. This kind of pressure has been reported in the l i terature (Blumenfield et a l . , 1987; Bolle, 1988; Haines, 1987; Henderson, 1984; Simmons-Allings, 1984). Another stressor identified 134 was media reporting about AIDS. Sensationalistic and incomplete stories caused the nurses to become anxious. In this study, the nurses reported a lack of emotional support. This form of support was seen as essential and i t was expected from nursing administration. It was interesting to note that although the nurses were upset about the lack of support, they were reluctant to talk with their administrators for fear of repercussions. Geis and Fuller (1986) describe how hospice staff , i f they spoke freely about their fears, were viewed as a threat to the hospice movement. Conflict with administrators was turned inward with the staff assuming the problem was their personal one. Some nurses in this study suppressed their true feelings because they believed no one was available who would understand. Co-workers were not often used as support persons due to the nurses' concern about confidential ity and how their relationships would change i f they spoke freely. The nurses did not turn to their families or friends for support unless they were nurses. They described the ideal support person as a nurse because only another nurse could understand 135 what i t was l ike to care for these patients. It was also mentioned that the support person should not be connected to the employing agency. Literature related to this topic focusses more on supportive strategies to decrease stress rather than looking at how or i f nurses receive emotional support. Many authors cite the need for emotional support for nurses caring for patients with AIDS (Bolle, 1988; Bennett, 1986; 1987; Flaskerud, 1987; Geis & Ful ler , 1986). Geis and Fuller (1986) state "when staff members are almost overwhelmed by feelings and fears, they need psychological support as badly as they need instructions about following the medical protocol" (p. 241). The nurses in this study, described different coping strategies they used to deal with their overall experiences and with their specific stressors. The l i terature on nurses caring for patients with AIDS, presents general coping strategies which may be effective in reducing stress (Beaufoy, Goldstone, & Riddel l , 1988; Bolle, 1988; Flaskerud, 1987; Rubinow, 1984; Simmons-Ailing, 1984). Bolle (1988) outlines several strategies which can assist in preventing burnout. These include education, staff support 136 groups, multidisciplinary team meetings, informal peer support, sp ir i tua l support, and nursing administration policies and practices (Bolle, 1988, p. 846). 137 CHAPTER 5 SUMMARY, CONCLUSIONS, AND IMPLICATIONS FOR NURSING Summary The discovery of AIDS has resulted in anxiety and fear throughout society. It has had a major impact on a l l the health care disc ipl ines , especially nursing. There is limited research which describes what i t is l ike for nurses to care for patients with AIDS. Therefore, this study explored nurses' experiences caring for these patients. A modified version of Spiegelberg's (1960; 1970; 1981) phenomenological approach was used to provide a description according to the perceptions of eight hospital nurses. The findings indicate that caring for patients with AIDS is complex and multifaceted. The nurses described their experiences as s tressful . The sources of stress varied for each nurse but the two major categories, identified by the researcher, were internal and external stressors. These stressors were feelings associated with caring for these patients. Internal ones included: (1) fear of contracting AIDS; (2) homophobia; and (3) caring for dying AIDS patients. External stressors were patient variables and societal views. The nurses also reported a lack 138 of emotional support which they expected from their nursing administration. Two major categories of coping strategies were used by these nurses. Their usual coping strategies were used to help them deal with the ov e r a l l s t r e s s f u l experience. Included in th i s category were physical a c t i v i t i e s , relaxation a c t i v i t i e s , and ta l k i n g with others. In order to deal with the s p e c i f i c internal and external stressors, the nurses used r a t i o n a l i z a t i o n , knowledge-seeking, withdrawal, and involvement. Conclusions There are two major conclusions a r i s i n g from t h i s study. F i r s t , the a r r i v a l of AIDS has resulted in increased stress in an already highly s t r e s s f u l profession. Nurses reported being very close to burnout. The denial that these feelings e x i s t or that patients with AIDS are d i f f e r e n t from others has resulted in these nurses f e e l i n g emotionally unsupported. Continued denial of th i s kind w i l l only add to the nursing shortage as more nurses burn out and leave the profession. The second conclusion i s that nurses need and expect emotional support. This raises the question of 139 who cares f o r the c a r e g i v e r ? These nurses b e l i e v e d i t was the r e s p o n s i b i l i t y of n u r s i n g a d m i n i s t r a t i o n to provide emotional support. Although, they were r e l u c t a n t t o d i s c u s s t h e i r f e e l i n g s with them, they wanted n u r s i n g a d m i n i s t r a t i o n to understand how s t r e s s f u l i t i s to care f o r p a t i e n t s with AIDS. T h i s k i n d of support would need to be implemented In such a way as to p r o t e c t the nurses' anonymity. At the same time, the nurses need to be ensured of no r e p r i s a l s f o r what they have to say. Increased communication between s t a f f nurses and a d m i n i s t r a t i o n i s necessary. Both groups need to work together to accomplish the primary g o a l of n u r s i n g which i s to care f o r p a t i e n t s . A l s o , n u r s i n g a d m i n i s t r a t i o n needs to become aware of how c e r t a i n p a t i e n t groups a f f e c t s t a f f nurses* In a d d i t i o n to these c o n c l u s i o n s , there i s the i s s u e of nurses' e t h i c a l and moral o b l i g a t i o n s . Although t h i s was not s p e c i f i c a l l y addressed i n t h i s study, i t i s r e l a t e d t o the o v e r a l l t o p i c . Nurses are e t h i c a l l y and m o r a l l y o b l i g a t e d to care f o r a l l p a t i e n t s and p a t i e n t s with AIDS are no e x c e p t i o n . A c c o r d i n g to the I n t e r n a t i o n a l C o u n c i l of Nurses' Code f o r Nurses, the nurse's primary r e s p o n s i b i l i t y i s to 140 those people who require nursing care. Upon entering the nursing profession a person assumes certain professional obligations, the essential one being to provide nursing care to patients (Curtin, 1986). Nurses who have prejudicial attitudes towards a certain group of people may have great d i f f i cu l ty providing high quality care. In this study, there was some evidence of prejudicial attitudes towards homosexuals, IV drug abusers, prostitutes, and immigrants with AIDS. It is beyond the scope of this study to address the actual nursing care provided; however, i t is important to be aware of the potential for negative attitudes to affect the quality of nursing care. Implications for Nursing Nursing Education The introduction of stress theory in nursing curricula or increased emphasis in curricula that already include this content is of increasing significance. Beginning nurse practitioners need to be aware of the real i t ies of nursing which includes recognizing that i t is s tressful . New graduates need to be prepared to identify manifestations of stress in themselves and their patients. They also need to learn how to cope with stress. 141 As AIDS becomes an increasingly common health problem, new graduates must be knowledgeable about this disease. They must be educated about the medical, pyschosocial, legal , and ethical aspects of AIDS. Detailed and accurate information needs to be provided to help dispel misconceptions. In addition, nursing students need to be sensitized to the issues associated with AIDS. Feelings about homosexuality and different l i festyles of people in the high risk groups need to be explored so these future nurses wi l l have a better understanding of these patients. They need to learn about the process of death and dying so they wi l l become more confident in their care. Nursing Practice Caring for patients with AIDS is undeniably stressful . Nurses in practice settings need to be aware of the possible stressors they may be faced with when caring for these patients. Receiving and providing support in the work environment is essential . Nurses in this study were distressed at the lack of emotional support yet on the other hand they did not provide i t to their co-workers. It was emphasized that this support could be provided only by a nurse who was preferably not connected with the 142 agency. Strategies to deal with stress in the workplace need to be implemented. Informal voluntary peer groups in hospitals where members trust each other are one possible solution. Also, hospital chaplains could be used as another source of support which would be c o n f i d e n t i a l . Nurse administrators need to take a closer look at the nurses caring for patients with AIDS. They need to find out how these patients a f f e c t the nurses by t a l k i n g and l i s t e n i n g to them, and a c t u a l l y observing their nursing care. Administrators also need to i d e n t i f y s p e c i f i c strategies that could be implemented to provide support. For example, they should provide breaks in nurses' assignments so they don't care for many dying patients in a short period of time. Also, h i r i n g practices need to be reviewed. Potential employees should be asked about th e i r feelings and previous experiences caring for patients with AIDS. Since nurses are e t h i c a l l y and morally obligated to care for a l l patients, assessment and monitoring of possible p r e j u d i c i a l feelings need to be carried out by employers. This could be done by surveys or values c l a r i f i c a t i o n research and actual observation of 143 nursing care. Evaluations from patients with AIDS regarding the care they received would be another method. Any such methods would need to be implemented in a non-judgemental manner. In addition, programs might need to be developed that would assist nurses to overcome prejudicial or negative attitudes. Nursing Research There is an overwhelming need for research on the nursing care of patients with AIDS, in part icular, research which looks at the psychological and ethical concerns of nurses. In this study, nurses described how stressful i t was to care for these patients. Further research is needed to validate i f this is true for nurses in other settings. Also, continued research is needed on this topic to identify i f over time these findings are s t i l l accurate descriptions of hospital nurses' experiences. Stress was the predominant theme which was repeatedly emphasized. There were also indicators of burnout. Some nurses were so overwhelmed and unable to cope, they mentally and/or physically withdrew from their patients. This indicates the need to explore specific coping strategies which are effective in dealing with stress associated with caring for 144 patients with AIDS. Coping and support were two major concepts that emerged from th i s study. These concepts were fundamental to the nurses' experiences; however, the research available did not c l e a r l y operationalize them in c l i n i c a l practice. Therefore, t h i s points to the need for additional research on how coping and support are operationalized in t h i s area. Research i s also needed on the effectiveness of d i f f e r e n t kinds of support. This could include support from colleagues, clergy, and psychologists. Nurses who f e l t uncomfortable with AIDS patients' homosexuality and alternate l i f e s t y l e s received l i t t l e , i f any, assistance to help them understand their feelings. Research on e f f e c t i v e strategies to deal with personal and professional c o n f l i c t s i s necessary. Another issue that could benefit from t h i s kind of research i s that of dealing with dying AIDS patients. Nurses reported f e e l i n g frustrated caring for such young patients who were dying. 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My confidential ity w i l l be maintained by coding of the transcripts which wi l l be known only to the researcher. I UNDERSTAND I AM UNDER NO OBLIGATION TO PARTICIPATE IN THIS STUDY AND REFUSAL TO PARTICIPATE WILL NOT AFFECT MY CAREER. I MAY WITHDRAW AT ANY TIME OR REFUSE TO ANSWER ANY QUESTIONS. I UNDERSTAND THERE ARE NO FINANCIAL BENEFITS IN PARTICIPATING IN THIS STUDY. I, the undersigned, understand the nature of Linda Pickthal l ' s study and give my consent to participate, acknowledge receiving a copy of this consent. Name, Phone Number Signed. Date Appendix C Sample Questions What is i t l ike to care for cl ients with AIDS? How do you feel about caring for AIDS clients?
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A phenomenological study of nurses' experiences caring for patients with Acquired Immunodeficiency Syndrome (AIDS)
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