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The information needs of homosexual/bisexual men with HIV/AIDS at the time of hospital discharge : a… Riddell, Rosemarie 1997

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THE INFORMATION NEEDS OF H O M O S E X U A L / B I S E X U A L M E N WITH HIV/AIDS AT THE TIME OF HOSPITAL DISCHARGE: A PILOT STUDY by RO S E M ARTE RIDDELL B.Sc.N. The University of Alberta, 1979 A THESIS SUBMITTED IN PARTIAL F U L F I L L M E N T OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF SCIENCE IN NURSING in THE F A C U L T Y OF GRADUATE STUDIES (School of Nursing) We accept this thesis as conforming to the required standard THE UNIVERSITY OF BRITISH C O L U M B I A October 1997 © Rosemarie Riddell, 1997 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. The University of British Columbia Vancouver, Canada Department Date DE-6 (2/88) Abstract A descript ive study was init iated to investigate the in format ion needs o f gay/bisexual men w i t h H I V / A I D S on discharge f r o m St. Paul's Hospi ta l in Vancouver, Br i t i sh Columbia. I n the last 20 years there has been increasing desire by consumers fo r in format ion about h o w to manage their health care. Accord ing to Lazarus's theory o f stress and coping, in format ion-seeking is one response that individuals may use in coping w i t h the stress o f serious illness. Studies have shown that gay/bisexual outpatients w i t h H I V / A I D S , cancer patients, and hospital patients all have specific informat ion needs about the management o f their illnesses. A dramatic change in the demographics o f the patient populat ion w i t h H I V / A I D S occurred at the hospital between the t ime the study was conceptualized and when data col lect ion began. Because o f the new combination antiretroviral therapies, fewer gay/bisexual men w i t h H I V / A I D S were requir ing hospital ization and increasing numbers o f in ject ion drug users w i t h H I V / A I D S were being admitted to the hospital in response to the epidemic o f H I V infections in that populat ion. When a sample o f gay/bisexual men could not be obtained in the t ime projected for the project, the data col lect ion ceased and the in format ion was analyzed as a pi lot study. Discharge in format ion needs for the 8 subjects o f the pi lot study were measured on the 40- i tem Patient Learn ing Need Scale (PLNS) . The relationship between subjects' perceived in format ion needs and selected sociodemographic and illness-related variables were examined. The f indings indicated that the subjects had a high need fo r in format ion and had a h igh degree o f m o o d disturbance pr ior to discharge. Because o f the small sample size no signif icant relationships were found between informat ion needs and sociodemographic and il lness-related variables. Based o n the f indings o f the pi lot study, it is recommended that a fu l l study be conducted that w o u l d include an investigation o f informat ion needs o f all patients w i t h H I V / A I D S on discharge f r o m hospital. Because o f the need for the involvement o f a research assistant, addit ional resources are required to conduct a ful l study. iii Table o f Contents Page Abstract i i Table o f Contents i i i L i s t o f Tables v Acknowledgement v i Chapter I : In t roduct ion 1 Purpose 2 Theoret ical F ramework 3 Research Questions 5 Def in i t ion o f Terms 6 Significance o f the Pi lot Study 6 Chapter I I : Rev iew o f L i terature 8 Homosexual/bisexual Outpatients w i t h H I V / A I D S 8 Cancer Patients 10 Hospi ta l Patients 12 Chapter I I I : Me thods 15 Research Design 15 Sample 15 Da ta Col lect ion Procedure 15 Ethical Considerations 16 Instrument 17 Da ta Analysis 19 Chapter I V : A Pi lot Study 20 Changing Demographics 20 Da ta Col lect ion Procedures 24 Chapter V : Results 27 Sample 27 Patient Learn ing Needs Scale 27 Sociodemographic Variables 30 Il lness-related Variables 30 Chapter V I : Discussion 39 Chapter V I I : Impl icat ions o f the Pi lot Study and Recommendations 42 References 44 Append ix A : Patient Questionnaire 49 Append ix B : Karnofsky Performance Status Inventory 57 Append ix C : Patient Consent F o r m 58 List of Tables Page I Demographics and Illness-related Variables 28 II Scores on the Patient Learning Need Scale 29 III Differences in Means of the Patient Learning Needs Scale and 31 Subjects with Different Educational Levels IV Differences in Means of the Patient Learning Needs Scale and 32 Employed/Unemployed Subjects V Differences in Means of the Patient Learning Needs Scale and 33 Subjects' Living Arrangements VI Differences in Means of the Patient Learning Needs Scale and 34 Subjects' HIV Diagnosis VII Scores on the Profile of Mood States 36 VIII Differences in Means of the Profile of Mood States and Subjects' 37 HIV Diagnosis IX Correlation of Patient Learning Needs and Subject Characteristics 38 Acknowledgement I am grateful to Sonia Acorn , Irene Goldstone, and Ray Thompson for their support dur ing the course o f this thesis. I am thankful to Craig Riddel l fo r his k ind assistance w i t h the statistical package, Stata, used in the data analysis for the project. Last ly , I am most grateful t o the patients w i t h HTV7AIDS w h o participated in the project. Chapter I : Introduction Acquired Immunodeficiency Syndrome (AIDS) is a significant health care problem in the province of British Columbia (BC) which reports the highest number of cases per capita in Canada. As of March 31, 1996 the British Columbia Centre for Disease Control reported 2,243 cases of AIDS, 85% of whom were gay and bisexual men (Wong, Mac Dougall, Patrick, & Rekart, 1996). In BC cases of AIDS, but not cases of HIV infection, are reportable by law to the medical health officer. Therefore, the number of gay and bisexual men who are infected with HIV is unknown . Recently the Centre for Excellence in HIV/AIDS estimated the number of individuals with HIV/AIDS in BC by analyzing many different sources of data: seroprevalence studies, the Centre's Drug Treatment Program, estimates of the actual number of people testing positive through the province's testing program and the results from mathematical modeling of the current number of AIDS cases (Strathdee, Schechter, Hogg, & O'Shaughnessy, 1994). Combining these sources of data it was estimated that approximately 7,000 to 10,000 individuals are presently infected with HIV in the province and the majority of these individuals are gay/bisexual men (Stephanie Strathdee, personal communication, December 17, 1996). HIV/AIDS is now recognized as a chronic illness characterized by stages that can extend over 15 years often requiring hospitalization for acute episodes of illness. St. Paul's Hospital, a 470 bed tertiary care facility located in Vancouver, provides care to 75% of patients with HIV/AIDS in the province. In 1992/93 the hospital reported 8,397 patient days for patients with HIV/AIDS and 11,338 patient days in 1995/96 (Bonnie Gable, personal communication, November 6, 1996). During 1995 and 1996 the average daily inpatient census of patients with HIV/AIDS throughout the hospital was approximately 30, about two-thirds of whom were gay/bisexual men. Nurses provide constant, direct care to patients with HIV disease in acute care hospitals. Therefore, nurses are in a position to provide information to patients about their disease. However, nurses may not know the information needs of AIDS patients. For example, in 2 large centres w i t h established gay organizations nurses may perceive that gay/bisexual men are very knowledgeable about A I D S . N o studies have been done to investigate the in format ion needs o f hospitalized gay/bisexual men w i th H I V / A I D S . Purpose I n the last 20 years there has been increasing desire by consumers for in format ion about health care. Experts attr ibute this phenomena to a number o f factors including: the increase in long- term illnesses and disabilities that need to be managed by patients and famil ies; an emphasis on cost containment result ing in earlier hospital discharge; society's greater ef fort to maintain health; and the consumer movement that emphasizes patients' r ights and contro l over their health status (Redman, 1993). The Canadian Counci l on Heal th Facil i t ies Accredi ta t ion (1995) has established standards which state that there must be evidence o f discharge planning and appropriate patient/family education that includes health p romot ion and illness prevention. I n 1994 a patient satisfaction survey, an init iat ive o f the Qual i ty Heal th Care N e t w o r k o f the Conference Board o f Canada, was conducted at St. Paul's Hospi ta l and nine other facilities across the country. A t St. Paul's Hospi ta l the results indicated that 2 0 % o f patients on the medical units (which include patients w i t h H I V / A I D S ) were dissatisfied w i t h in format ion provided at discharge. However , the survey did not explore what specific in format ion patients desired on discharge. I t cannot be assumed that "more in format ion is better; all people desire complete informat ion; and more in format ion reduces stress and enhances the abil ity to cope w i t h this stress" (Bagley-Burnet t , 1988, p. 151). Research is required to investigate h o w much informat ion individuals require, what type, when i t is needed, and what variables influence informat ion needs. I n 1995/96, at the t ime that this study was conceptualized, gay and bisexual men accounted fo r the major i ty o f patients hospital ized fo r H I V / A I D S . Therefore, the purposes o f this study were to : 1) investigate the in format ion needs o f gay/bisexual men w i t h H I V / A I D S on discharge f r o m hospital in regard to self-care, and 2) to explore the variables that may influence these needs. 3 F r o m the t ime that this study was conceptualized unti l data col lect ion commenced in the spring o f 1997 there was a dramatic change in the populat ion o f patients w i t h H I V / A I D S admit ted to the hospital. D u r i n g most o f 1996, the daily FnV /ATDS inpatient census was approximately 30 and then declined at the end o f the year to approximately 18 to 22. I n February 1997, an 18 bed H I V / A I D S ward was opened. A l though no administrat ive statistics are collected on the risk groups o f H I V / A I D S patients, a t rend was observed that decreasing numbers o f gay/bisexual men and increasing numbers o f inject ion d rug users were being admit ted to the hospital. The drop in hospital admissions o f gay/bisexual men was thought to be related to the expanded use o f double combinat ion ant iretroviral therapy and the in t roduct ion o f protease inhibitors in the summer o f 1996 among this populat ion. The increasing number o f H I V seropositive injection drug users admitted to hospital reflected the we l l documented epidemic o f H I V infections occurr ing among this populat ion in Vancouver 's D o w n t o w n Eastside. Because o f these unanticipated developments, problems were encountered col lect ing the sample in a t imely fashion. A s a consequence, a decision was made to consider the project a pi lot study. The funct ion o f a pi lot study is to obtain in format ion by analyzing the data f r o m a small scale project to assess the feasibil i ty o f a fu l l study and to make revisions to eliminate or reduce the problems identif ied in the pi lot (Pol i t & H u n g l e r , 1991). Theoret ical F ramework The theoretical f ramework fo r the study was provided by the theory o f stress and coping developed by Richard Lazarus (1966) and his associates (Cohen & Lazarus, 1979; Lazarus & Launier, 1978; M o n a t & Lazarus, 1991). This theory has been selected because it helps to explain w h y individuals w h o are coping w i t h the stress o f severe illness may not be mot ivated or ready to learn about the disease or its implications at a part icular point in t ime (Fredette, 1990). Accord ing to the theory, stress occurs when environmental demands or internal demands (or both) tax or exceed the resources o f an individual (psychological), social system or tissue 4 system (physiological). Stress is not a stimulus nor a response, but a process which involves continuous transactions between the individual and the environment, with each affecting and being affected by the other. Transactions that could lead to stress are assessed by means of a mental process called cognitive appraisal. In primary appraisal the individual evaluates the significance of the event for his well-being (stressful, benign-positive, or irrelevant), whereas secondary appraisal is an evaluation of available coping resources. Events appraised as stressful are of three types: harm/loss referring to damage that has already occurred; threat referring to damage that has not yet happened; and challenge referring to the achievement of growth or mastery by using more than routine resources. Primary and secondary appraisal are interrelated. Secondary appraisal not only influences the primary appraisal process itself, decreasing or increasing threat or the sense of harm, but it shapes coping activity. Coping refers to an individual's efforts to manage environmental and internal demands (conditions of harm, threat, or challenge) that are appraised as exceeding or taxing his resources. Coping efforts can be directed toward the environment or toward the self, or both, and can be appraised by the person as responsible for the stressful event. Coping serves two main functions. Problem-focused coping refers to efforts to improve the troubled transaction by directing efforts toward the environment or toward the self. Emotion-focused coping refers to thoughts or actions that relieve the emotional response to the stress. The strategies people use in responding to the problem and/or regulating the emotional response are: information seeking, direct action, inhibition of action, and intrapsychic processes. Information seeking involves acquiring knowledge about the stressful situation and provides a basis for action to change the transaction, but it also may be utilized to make the person feel better by making the transaction seem more under control. Information seeking increases in situations of high uncertainty or ambiguity. Direct action involves doing something specifically and directly to cope with the stress. Direct action may involve altering one's own behavior (e.g. stopping smoking), or altering the environment (e.g. changing jobs). 5 Since direct act ion has its o w n dangers, we are also capable o f inhibi t ion o f act ion (e.g. ho ld ing back f r o m impulsive and premature actions). Intrapsychic modes o f coping include all cognit ive processes designed to regulate the emot ion by making the individual feel better. These include cognit ive strategies that redefine the event in a more opt imist ic l ight (e.g. saying things could be worse or seeing g o o d g r o w out o f the problem) and the tradit ional defenses such as denial, avoidance, and intel lectualization. I n any stressful encounter several coping modes are generally used. Lazarus and his associates do not support the v iew o f some investigators w h o theorize that individuals possess coping traits or dispositions ( funct ion o f personality) wh ich w o u l d imply that individuals w o u l d ut i l ize the same type o f coping in most stressful situations. This approach discounts the role o f the environment in the stressful situation. The determinants o f our coping modes in specific situations are "complex and largely u n k n o w n at this t ime but l ikely depend upon the condit ions being faced, the options available to us, and our personal i ty" ( M o n a t & Lazarus, 1991, p.6). A l l cop ing processes may have both posit ive and negative consequences fo r an indiv idual (e.g. smoking may ease anxiety o f pending surgery but complicate the postoperat ive per iod). The effectiveness o f a coping process depends on one's values, the level o f analysis (i.e. physiological , psychological, or sociological), points in t ime (i.e. short versus long-run) , and the specific nature o f the situation. For example, denial may be very useful in helping an indiv idual maintain hope and a sense o f wel l -being when there is noth ing construct ive that can be done to overcome a harm or threat. On the other hand, denial can be damaging when it prevents essential direct actions required to avert the negative consequences o f a threatening situation. Research Questions The fo l l ow ing research questions were proposed: What are the in format ion needs o f homosexual/bisexual men w i t h H I V / A I D S in regard to self-care on discharge f r o m hospital? 6 W h a t are the relationships between informat ion needs and demographic variables, stage o f disease, and emotional state? Def in i t ion o f Terms 1. In fo rmat ion needs in regard to self-care were measured by the Patient Learn ing Needs Scale (Bubel la et al., 1990a). 2. Homosexual/bisexual men were those individuals w h o self-identify their sexual or ientat ion as such, according to the physician's admission history. 3. Demographic and illness-related variables included age, education, employment status, l iv ing arrangements, number o f medications prescribed by the physician dur ing the previous 30 days pr io r to hospital ization, C D 4 count, and the number o f previous H I V - r e l a t e d hospital izations. The measurement o f viral load was not included since the test result takes 2 weeks to obtain and therefore is often not available for newly diagnosed patients dur ing the hospital stay. Stage o f disease was defined as four groups: a) patients w h o have tested H I V seroposit ive w i th in the previous month but do not have an A I D S defining illness; b) patients w h o have tested H I V seroposit ive for more than one month but do not have an A I D S def ining illness; c) patients w h o have been diagnosed w i t h an A I D S defining illness w i th in the previous month , and d) patients w h o have been diagnosed w i t h an A I D S defining illness fo r more than one month. Emot iona l state was measured by the shortened version o f the Prof i le o f M o o d States ( M c N a i r , L o r r , & Droppleman, 1992). Signif icance o f the Pi lot Study Since no studies have explored the informat ion needs o f hospitalized gay/bisexual men w i t h H I V / A I D S , the f indings f r o m this pi lot study could provide the researcher w i t h the in format ion required to make decisions about whether to conduct a fu l l study and about revisions wh ich are needed to improve the project. The goal o f the major study w o u l d be to prov ide nurses w i t h the first systematic knowledge about the in format ion needs o f patients w i t h FJJV/AIDS at hospital discharge. Strategies could then be designed to meet the in format ion needs o f these individuals enabling them to cope w i t h their illness. 8 Chapter I I : Review o f the Li terature Three bodies o f l i terature relating to informat ion needs have been reviewed fo r this study: 1) the in format ion needs o f gay/bisexual patients w i t h H I V / A I D S predominant ly in the outpat ient sett ing; 2) the informat ion needs o f patients w i t h cancer; and 3) the in format ion needs o f hospital patients in general. Homosexual /b isexual Patients w i t h H I V / A I D S Indiv iduals infected w i t h H I V uti l ize a wide variety o f coping strategies (Derdiar ian & Schobel, 1990; Gaskins & B r o w n , 1992; Korn iewicz, O'Brien, & Larson, 1990; L o n g o , Spross, & Locke , 1990; Ragsdale & M o r r o w , 1990; Siegel & Krauss, 1991), but in format ion seeking as a coping mode has not been wel l investigated. A study (Catalan et al., 1994) was conducted investigating the v iews o f gay and bisexual men and their professional caregivers about patients' v iews on involvement in decision-making and information-seeking. The gay and bisexual men were receiving medical care as in and outpatients in London , U K . I n terms o f information-seeking, patients' preference fo r in format ion was much greater than the staff assumed it to be. The results indicated that doctors had lower preference for patients' information-seeking than patients, regardless o f disease stage, and that nurses and social workers had lower scores than asymptomatic patients. The researchers expressed concern that the discrepancy between staf f percept ion o f patients' preference fo r in format ion and the v iews held by patients may lead to dissatisfaction w i t h care, and uncertainty w i t h treatment and prognosis, wh ich in turn may affect compliance w i t h medical advice. L o v e j o y and associates conducted a series o f studies investigating the beliefs, behaviors and the in format ion needs o f gay/bisexual men w i t h H I V / A I D S attending hospital outpat ient clinics in San Francisco (Love joy & M o r a n , 1988; Love joy , M o r a n , & Paul, 1988; Love joy , M o r g e n r o t h , Paul, Freeman, & Christianson, 1992; Moran , Love joy , Viele, D o d d , & Abrams, 1988). The first study (conducted in 1985) surveyed 76 outpatients on their perceptions o f the adequacy o f health informat ion provided in the outpatient clinic ( M o r a n , Love joy , Viele, 9 D o d d , & Abrams, 1988). Data were obtained f r o m six open-ended questions that were part o f the A I D S Beliefs and Behavior Questionnaire ( A B B Q ) ( M c K u s i c k , Hors tman, & Coates, 1985) developed to survey gay men in the community. Gay men were asked what questions w o u l d they have l iked health care personnel to have answered for them, h o w health care personnel have helped them deal w i t h their sexual needs and h o w they could have helped more. The f indings indicated that four years into the epidemic 5 2 % o f respondents wanted more expl ici t in format ion about safe sexual behaviors. The second published paper, a pi lot study conducted in 1987, investigated the beliefs, behaviors and in format ion needs o f 30 self-selected outpatients (Love joy & M o r a n , 1988). Da ta were collected w i t h the self-administered 40 i tem A B B Q modi f ied for the purposes o f the study. Un l i ke the earlier study, 9 0 % o f the participants were interested in learning ways to bui ld their immune systems and only 10% wanted informat ion about safe sexual practices. Fo l l ow ing the pi lot study, the researchers surveyed 178 outpatients and completed a comparat ive analysis o f the self-care behaviors and informat ion needs o f men w h o had an A I D S diagnosis and o f those w h o were infected, but did not have an A I D S diagnosis (Love joy , M o r a n , & Paul, 1988). B o t h groups reported an increased use o f self-care behaviors w i t h dramatic reductions in the use o f I V drugs and stimulants. As in the pi lot study, 7 3 % o f respondents wanted more informat ion on ways to bui ld their immune systems and only 1 2 % wanted more informat ion on safe sex practices. In addi t ion, the in format ion needs o f H I V seropositive outpatients were significantly different than outpatients w i t h A I D S . Relat ive to outpatients w i t h A I D S , H I V seropositive outpatients w i thou t A I D S were signif icantly more interested in learning additional informat ion about A I D S symptoms and management, side effects o f medications, counseling/financial services, and ways to combat depression. However , the questionnaire used a yes-no response format wh ich l imi ted the strength o f response and variabi l i ty o f scores. Also the informat ion needs o f gay/bisexual men w h o were newly diagnosed w i t h A I D S were not addressed. Since i t is not presently k n o w n i f all persons w h o are H I V seropositive w i l l develop A I D S , the diagnosis o f A I D S , 10 wh ich has no cure, is a crisis fo r many individuals. Thus, it is important to assess the in format ion needs fo r these patients at the t ime o f an A I D S diagnosis. A l t hough the subsequent study (Lovejoy, Paul, Freeman, & Christianson, 1991) explored the correlates o f self-care and symptom distress, wh ich is not the focus o f the present proposal, one o f the f indings has implications for this proposal. Frequent use o f self-care behaviors was significantly and posit ively related to a new A I D S diagnosis wh ich according to the researchers suggests that outpatients may be part icularly receptive to self-care in format ion at this crisis point. The last study (Lovejoy, Morgenro th , Paul, Freeman, & Christ ianson, 1992) investigated the predictors o f informat ion seeking, that is, h o w active outpatients were in their quest for information. The individuals w h o were most active in their search fo r in format ion were those w h o increased their use o f self-care after becoming aware o f an H I V posit ive status. These findings underscore the importance outpatients w i t h H I V disease place on self-care as a means o f coping w i t h their illness. Cancer Patients Numerous studies have been conducted on the informat ion needs o f cancer patients and these findings may have relevance to the needs o f gay/bisexual mean w i t h H I V / A I D S disease. Cancer, l ike H I V disease, is frequently a chronic disease unfo ld ing over a considerable per iod o f t ime w i t h patients enduring prolonged uncertainty about recurrence, progression o f disease and the possibi l i ty o f death. Some types o f cancer (e.g. non-Hodgkin 's lymphoma) wh ich occur w i th in the context o f H I V infection are A I D S defining illnesses. Generally, patients w i t h cancer have many informat ion needs and are able to identi fy these needs in regard to the diagnosis, prognosis, diagnostic tests, treatments and side effects, physical and psychological funct ion ing, and fami ly and social relationships (Cambel l-Forsyth 1990; Cawley, Kost ic , & Cappel lo, 1990; Derdiar ian, 1987; D o d d & Ahmed, 1987; Har r ison-Woermke & Graydon, 1993) . However , in one case-study five patients receiving chemotherapy fo r the first t ime were asked h o w much they wanted to learn about their treatment ( H i r o m o t o & Dungan, 11 1991). .Fou r participants wanted to learn all there was to k n o w and one indiv idual , w h o had just been in formed o f his diagnosis, expressed no interest. Signif icant differences between nurses' and patients' perceptions o f the learning needs o f cancer patients have been documented (Fernsler, 1986). I n one study, 27 cancer patients ranked their in format ion needs and these were compared to the nurses' perceptions o f the patients' in format ion needs (Lauer, Murphy , & Powers, 1982). A l though patients ranked in format ion related to diagnosis as first in importance, nurses ranked it as sixth. Nurses ranked dealing w i t h feelings the most important area for the patients, but patients ranked it as fifth in importance. Some studies have explored variables that may be associated w i t h in format ion needs, thus faci l i tat ing the nurses' identi f icat ion o f patients w i t h needs. Some, but not all findings are consistent; however, studies are not entirely comparable. I n one sample o f 60 patients recently diagnosed as having cancer, the findings indicated that there was l i t t le difference in the number o r the importance o f needs according to age, gender, education, t ime lag since first symptoms and having read about cancer (Derdiarian, 1987). I n another study by Brandt (1991) o f 22 patients undergoing radiation implants, patients w i t h less advanced disease and those w h o were more anxious had a greater number o f needs. N o relationship was found between age, education, and the desire to participate in medical care and the number o f in format ion needs. I n a study o f 40 women undergoing radiat ion no relationship was found between in format ion needs and demographic variables or the stage o f disease (Harr ison-W o e r m k e & Graydon, 1993). Results o f a study o f 80 patients undergoing radiat ion therapy indicated no significant difference in knowledge or in format ion needs about radiat ion treatment according to age (Cambell-Forsyfh, 1990). The purpose o f assessing patients' informat ion needs is to establish a basis fo r p rov id ing in format ion to facil i tate the patient's coping. Derdiar ian (1989) conducted an experiment invo lv ing 60 male cancer patients and their spouses w i t h each couple randomized into either the cont ro l or the experimental group. The experimental group o f couples received 12 indiv idual ized, formal in format ion based on a pr ior assessment o f their self-reported in format ion needs. The contro l o f couples received the rout ine clinic in format ion. B o t h groups completed questionnaires which measured their informat ion needs, their satisfaction w i t h the in format ion provided, and their perception o f the effect o f the in format ion on their cop ing (behaviors indicat ing problem-solving and regulation o f emot ion) . The findings indicated that the experimental group gained more informat ion and were more satisfied w i t h that in format ion than the contro l group. However , the experimental group did not show signif icantly higher coping compared to the control group. Derdiar ian explained this result could be due to the di f f icul ty in evaluating coping or the need fo r coping modes in addi t ion to in format ion. I n summary, there is an extensive l i terature indicating that cancer patients have identi f ied educat ion needs. A l though there are some conf l ict ing findings, especially w i t h respect to the factors correlated w i t h these informat ion needs, this l i terature provides evidence that studies o f in format ion needs o f patients can be useful in provid ing nursing care. Hospi ta l Patients The l i terature on the effects o f hospitalization on patients' needs fo r in format ion was also reviewed. A recent study (Katho l & Wenzel, 1992) found that 4 3 % o f newly admit ted medical patients met the criteria for depression and anxiety. Those w h o remained in hospital 20 days or longer showed init ial improvement, but then returned to baseline symptom levels. H igher levels o f anxiety and depression have been found in patients w i t h neoplastic, infective and undiagnosed illnesses (Wilson-Barnett , 1978). Hospi ta l izat ion contributes to anxiety and depression as patients are confronted w i t h an unfamil iar environment in wh ich they find themselves dependent on others w i t h l i t t le cont ro l over events around them. Accord ing to Taylor (1979) the patient's loss o f cont ro l occurs th rough the rout in izat ion o f procedures, by bewildering bureaucratic procedures, by non-person treatment by the medical staff and by the lack o f in format ion prov ided about his condi t ion. The reasons hospital staff fail to provide adequate in format ion include lack o f 13 t ime, concern that the informat ion may be misunderstood or alarming to the patient, and concern that the patient may be encouraged to ask more questions. Patients respond by assuming "good patient" behavior or "bad patient" behavior. The "good patient", concerned that his behavior pleases the staff, refrains f r o m seeking informat ion w i t h resultant anxiety. Whereas the "bad patient" often plays the consumer role insisting on his r ight to know. However , he may eventually give up and become compliant i f repeated efforts to gain in format ion fail to produce results. Taylor's v iew is supported by Lenz (1984) w h o describes the physical and interpersonal environment as one o f the variables affecting active in format ion seeking. I n inst i tut ional settings patients are frequently thwarted from seeking in format ion from physicians and nurses because o f t ime pressures, lack o f privacy, or professional att i tudes. A l t hough the hospital environment may discourage informat ion seeking, evidence indicates that patients have many informat ion needs. I n studies examining the type o f activit ies wh ich contr ibute to medical/surgical patients' sense o f contro l dur ing their hospital izat ion, Dennis (1987, 1990) found that informat ion about diagnosis, treatment, and lifestyle implicat ions o f the disease process was central to faci l i tat ing patients' sense o f contro l . The need fo r informat ion was found throughout the sample regardless o f whether patients found contro l through ful f i l l ing the patient role (concerned about obeying the rules and do ing what was r ight) or being involved in decision - making processes, or direct ing interpersonal and environmental interactions. However , in format ion is a complex issue and it cannot be assumed that all patients want complete in format ion under every circumstance. Researchers have documented beneficial effects o f p rov id ing informat ion to patients undergoing invasive procedures, but some studies have found that the benefits o f informat ion depend on the patient's coping style. I n one study (Mi l le r & Mangan, 1983) women undergoing an invasive test for cancer were classified as avoiders or in format ion seekers on the basis o f their responses on a questionnaire. The patients w h o reacted negatively after the examination, as shown by their high pulse rates, 14 were the avoiders w h o received extensive informat ion and the in format ion seekers w h o received l i t t le informat ion. This f inding underscores the necessity o f assessing the in format ion needs o f patients. One recent study investigated medical/surgical patients' in format ion needs at the t ime o f discharge f r o m hospital (Bubela et al., 1990a). The researchers developed an instrument, the Patient Learn ing Needs Scale ( P L N S ) , that assessed patients' in format ion needs related to knowledge o f their condi t ion, medications, managing activities o f daily l iv ing and interpersonal communicat ion. The findings o f the study o f 301 patients indicated that patients had a variety o f informat ion needs. Women, individuals w h o had not attended college and patients w i t h cancer had significantly more informat ion needs. Leng th o f t ime spent in hospital, number o f discharge medications and the patients' perceptions o f the inf luence o f the illness on life were all posit ively related to in format ion needs at discharge. However , in subsequent studies o f specific patient populations using the P L N S no relationship was found between the overall P L N S score and gender, education, and length o f hospital izat ion (Gal loway, Bubela, M c K i b b o n , McCay , & Ross, 1993; Gal loway, Bubela, M c K i b b o n , Rebeyka, & Saxe-Braithwaite, 1995) and number o f discharge medications (Gal loway, Bubela, M c K i b b o n , Rebeyka, & Saxe-Braithwaite, 1995). T o summarize the findings o f the literature review, patients generally desire in format ion about their health problems, but the nurse may not k n o w what in format ion w i l l best meet the patients' needs. Therefore, it is important to investigate the type, amount and t iming o f in format ion required and the variables associated w i t h these needs, so that patients may be ident i f ied and interventions planned that may enhance coping. 15 Chapter I I I : Methods Research Design A descript ive survey design was used for this study. Data were col lected fo r each patient by a self-administered questionnaire (Appendix A ) . Some data relating to illness, such as risk g roup and disease stage, were obtained f r o m a review o f the patient's chart. Sample Da ta were collected f r o m a convenience sample o f gay/bisexual patients w i t h H I V / A I D S at St.Paul's Hospi ta l in Vancouver. Setting the significance level at 0.05 and the power at 0.80 and expect ing a moderate effect size, the sample size was established to be 50 patients (Shott , 1990). D u r i n g 1995-96 there were approximately 15 discharges per week w i t h the except ion o f the summer months when the inpatient census was somewhat lower. The selection cri teria for subjects included the fo l lowing: 1) were self- identif ied as homosexual o r bisexual men w h o were H I V seropositive, or w h o had an A I D S diagnosis according to the admit t ing physician's history, or w h o were diagnosed w i t h H I V or A I D S dur ing the current hospital ization; 2) had knowledge o f their diagnosis; 3) were cognit ively intact as judged by their nurses; 4) were 19 years o f age or older; 5) were able to speak and wr i t e Engl ish; 6) were aware o f their discharge plans; 7) were w i th in 72 hours o f discharge according to the attending physician; 8) were wi l l ing to participate in the study; and 8) were able t o part icipate in the management o f their health care measured by a rat ing o f 60 or above on the Karno fsky Performance Status Inventory (Karnofsky & Burchenal , 1949) (Appendix B ) . This inventory contained 10 statements that described the percentage o f funct ional status available to patients based on their ability to per form self-care. D a t a Col lec t ion Procedure The Nurs ing Clinician fo r H I V Care (the investigator) reviewed the status o f patients daily o n the H I V / A I D S ward. I n addit ion, she assessed the status o f newly diagnosed patients referred to her fo r H I V education f r o m other wards in the hospital. Patients' r isk category, condi t ion, and possible discharge date were discussed w i t h the nurses and attending 16 physicians. W i t h i n 72 hours o f discharge, the Nurs ing Clinician for H I V Care completed the Karno fsky Performance Status Inventory w i t h input f r o m the patient's nurse. Patients w h o met the selection cri teria were approached by the Nurs ing Clinician fo r H I V Care and asked i f they were interested in part icipating in the research project. Eth ica l Considerations Pr io r to ini t iat ion o f the study the research proposal was approved by committees fo r ethical approval f o r St. Paul's Hospi ta l and the Universi ty o f Br i t ish Columbia. The Nurs ing Cl in ic ian was permit ted to approach patients about the study because she was a member o f the mult id iscipl inary team involved in their care. Patients were prov ided w i t h complete verbal and wr i t ten informat ion (Appendix C) about the study, including: the purpose, the durat ion, h o w data w o u l d be gathered, h o w the data w o u l d be used, the benefits, potential harms, and the efforts to ensure confidential i ty and anonymity. The benefits included increasing the knowledge o f nurses about the informat ion needs o f patients w i t h H I V / A I D S w i t h the goal o f designing strategies to meet these needs. Another potential benefit f r o m part ic ipat ion in the study was that subjects could identify and obtain in format ion that they required fo r managing their care at home before leaving the hospital. N o n e o f the patients not i f ied the investigator about become distressed th ink ing about their illness in the course o f part ic ipat ing in the study. Therefore, counselling by resource people such as the patient's fami ly doctor , the admit t ing physician, and peer counselors was not required. Patients were assured that refusal to participate wou ld in no way affect their care and that they could w i t h d r a w at any t ime before or dur ing the study. The patient's confidential i ty was protected by identi fying questionnaires w i t h a code rather than the patient's name. Only the investigator and members o f the thesis commit tee involved in the research had access to the codes. Patients were informed that the study results w o u l d be submitted fo r publ icat ion, but to ensure anonymity f indings w o u l d be repor ted such that individuals could not be identif ied. Af ter complete in format ion had been prov ided, the patient was asked to sign a consent f o r m (Appendix C) . 17 Instrument The survey instrument consisted o f three sections (see Appendix A ) : 1) patient in format ion wh ich included demographic and illness-related in format ion; 2) the Patient Learn ing Need Scale (PLNS)(Bube la et al., 1990a, 1990b); and 3) the Prof i le o f M o o d States ( P O M S ) ( M c N a i r , Lo r r , & Droppleman, 1992). The self-report patient in format ion questionnaire was designed by the researcher. In format ion was collected on age, education, employment status, l iv ing arrangements, stage o f disease, number o f previous Ff lV-re la ted hospital izations, C D 4 count, and the number o f medications prescribed by the physician dur ing the previous 30 days before coming to the hospital. The P L N S is a 40 i tem self-administered questionnaire designed to measure in format ion needs o f adult medical or surgical patients pr ior to hospital discharge. Patients are asked to rate h o w important specific items are to learn about in order to manage their health care at home. Va l id i t y and rel iabil i ty testing o f the original and revised P L N S have been conducted. The original P L N S had content and face val idi ty based on f indings in the l i terature and the expert opinions o f nurse clinicians and clinical nurse specialists. Beginning construct val id i ty was established by factor analysis w i t h a sample o f 301 medical and surgical patients w h o were w i th in 72 hours o f discharge home. This factor analytic study indicated the presence o f seven factors in a 50 i tem scale. I n subsequent use, the P L N S revealed inconsistent rel iabi l i ty in a factor related to skin care. Therefore, the P L N S was refactored using a poo l sample o f 250 subjects (Chesnick, 1992; Gal loway, Bubela, M c K i b b o n , McCay , & Ross, 1993; Gal loway, Bubela, M c K i b b o n , Rebeyka, & Saxe-Braithwaite, 1995; Gal loway & Graydon, 1996; Gal loway, Rebeyka, Saxe-Braithwaite, Bubela, & M c K i b b o n , ( in press); J ickl ing, 1995). The revised P L N S retained 40 items in five factors labeled Support and Care in the Communi ty , Medicat ions, Treatment and Act iv i t ies o f L iv ing , Complicat ions and Symptoms, and Illness-Related Concerns. These five factors account for 4 4 . 7 % o f the variance in the 40 i tem scale. The scale and each factor are reliable as assessed by Cronbach's coefficient alpha: .95 ( total 18 scale); .91 (Suppor t and Care in the Communi ty) ; .90 (Medicat ions); .85 (Treatment and Act iv i t ies o f L i v i ng ) ; .82 (Complicat ions and Symptoms); and .76 (I l lness-Related Concerns). The P L N S usually requires less than 20 minutes to complete. The scale yields a total score w i t h a min imum score o f 40 and a maximum o f 200. Subjects are asked to rate the importance o f an i tem on a scale o f 1 (not important) to 5 (extremely impor tant ) as to its importance to k n o w in order to manage their health care at home. The subscales address in format ion needs related to : support and care in the communi ty (knowledge about negot iat ing the health care system, recognizing and obtaining intrapersonal support, and prevent ive skin care; see P L N S items 17, 3 1 , 13, 32, 12, 27, 22, 10, 33, 29) ; medications (the knowledge required to understand and administer medications; see P L N S items 36, 37, 35, 4, 25, 39, 6, 26) ; treatment and activities o f l iv ing (knowledge about treatment and guidelines fo r physical act ivi ty, nutr i t ion, and sleep; see P L N S items 24, 18, 2, 28, 30, 20, 38, 23) ; compl icat ions and symptoms ( informat ion needed to f o r m expectations about the illness impact and the specific informat ion needs around recognit ion and management o f symptoms and compl icat ions; see P L N S items 8, 11, 3, 5, 2 1 , 7, 9, 34) ; and illness-related concerns ( h o w to communicate about illness and h o w to manage in areas as hygiene, rest, and el iminat ion problems; see P L N S items 15, 40, 19, 1, 14, 16). Emot iona l state was measured by the self-report shortened version o f the Prof i le o f M o o d States ( P O M S ) , a questionnaire that has been used in previous studies o f FJJV/AIDS patients (Love joy et al., 1991). The 30 i tem P O M S measures six mood states: anxiety (items 1, 6, 12, 16, 20) , depression (items 7, 11 , 15, 17, 21), anger (items 2, 9, 14, 25, 28), v igor (items 4, 8, 10, 27, 30) , fat igue (items 3, 13, 19, 22, 23), and confusion (items 5, 18, 24, 26,29). Each i tem is rated f r o m 0 (not at all) to 4 (extremely). A total mood score (0-100) is derived by summing subscale scores, w i t h v igor scores weighted negatively. H igher total m o o d scores and P O M S subscales indicate higher levels o f mood disturbance dur ing the previous week. Corre lat ion coefficients between short and long versions o f the P O M S are 0.95 and higher. 19 The val id i ty and reliabil i ty (alpha 0.90) o f the long version o f the P O M S have been established (McNa i r , 1971). The P O M S requires less than 10 minutes to complete. Da ta Analysis Characteristics o f the sample related to demographics, stage o f disease, in format ion needs, and emotional state have been summarized using descriptive statistics. The data have been analyzed to determine the nature and degree o f significance o f the relationships between in format ion needs (dependent variable) and each o f the independent variables (age, education, employment status, l iv ing arrangements, number o f medications prescribed pr io r to hospital izat ion, number o f previous HIV- re la ted hospitalizations, stage o f disease, and emot ional state). Because the sample size was small, statistically significant relationships were not observed. However , the data were analyzed in order to learn as much as possible f r o m the sample collected and to decide whether a ful l study is warranted. The P L N S and P O M S data were assumed to meet the assumptions (normali ty, independence o f residuals, and homogenei ty o f variances) for parametric testing (as in other studies using the P L N S and P O M S ) . The sample size was too small to test these assumptions. Bivar iate relationships between in format ion needs and the independent variables o f interval level were assessed using Pearson's r. The t-test was used to calculate differences in means between in format ion needs and independent variables at the nominal level. 20 Chapter I V : A Pi lot Study When the original study was proposed, gay/bisexual men consti tuted the major i ty o f H I V / A I D S patients in the hospital. The A I D S Care Team, o f wh ich the invest igator is a member, conducted a weekly review o f all H I V / A I D S inpatients, discharges, and deaths. D u r i n g 1995 and much o f 1996 there was an average o f 15 discharges per week, o f w h o m approximately two- th i rds were gay/bisexual men. O f these 10 gay/bisexual male discharge patients it was not k n o w n h o w many wou ld meet the criteria for the study. Assuming that all 10 discharge patients w o u l d meet the criteria for the study, it was projected that it w o u l d take a m in imum o f 5 weeks to collect 50 subjects required for the study. Da ta col lect ion began the beginning o f M a y 1997, and after 10 weeks 8 subjects had been enrol led in the study. A t that rate i t was estimated that it wou ld take 62 weeks to collect the proposed sample. A t this point the investigator met w i t h her thesis supervisor and a decision was made to end data col lect ion and to report the project as a pi lot study. W i t h the approval o f the other t w o thesis commit tee members, the investigator proceeded to analyze the in format ion obtained f r o m the 8 subjects and to make recommendations about revisions to reduce or eliminate the problems encountered. Changing Demographics The precipi tous drop in the hospital admissions o f gay/bisexual men w i t h H I V / A D D S could we l l be explained by the expanded use o f combinat ion ant iretroviral therapy and the in t roduct ion o f a new class o f antiretrovirals, the protease inhibitors. The B C Centre fo r Excellence in H I V / A D D S has been provid ing antiretroviral medications th rough its D r u g Treatment Program since 1993. There are currently approximately 2,000 individuals receiving this therapy o f w h o m 85 to 9 0 % are gay/bisexual men (Dr . Rober t H o g g , personal communicat ion, August 6, 1997). Researchers at the Centre assessed the impact o f ant i retroviral therapy by examining patterns o f mortal i ty and found that the death rate fo r individuals receiving antiretroviral therapy fell steadily f rom January, 1994, to November , 1996 (Br i t ish Columbia Centre for Excellence in H I V / A I D S , 1997). I n the th i rd and four th 21 quarters o f 1996, the rate o f death for H I V / A I D S patients was 23 per 1000 patients, as compared w i t h 70 per 1000 in the first quarter o f 1994. The researchers credited the decline in mor ta l i ty to the availabil ity o f 3 T C and the expanded use o f double combinat ion ant i retroviral therapy in the province. W i t h the int roduct ion o f the protease inhibitors, a new class o f antiretrovirals approved in the summer o f 1996, the researchers expected even greater benefits in the future. The reduction in the death rate fo r individuals on ant iretroviral drugs, predominant ly gay/bisexual men, has been paralleled by a reduct ion in hospital admissions. A t St Paul's Medica l Grand Rounds on September 11th, Dr . Paul Vo lberd ing, a w o r l d renowned expert in H I V f r o m the San Francisco General Hospi ta l ( S F G H ) , described the impact o f combinat ion antiretroviral therapy on patients in San Francisco. A I D S hospices are closing, patients are experiencing few opportunist ic infections, and the 25 bed H I V / A I D S w a r d at the S F G H presently has only 6 to 8 beds occupied by patients w i t h the disease. Approx imate ly 3 0 % o f individuals on antiretroviral therapy in the SFGH's p rogram are in ject ion drug users ( I D U s ) compared to less than 10% in Vancouver. The relatively small number o f inject ion drug users on antiretroviral drugs in Vancouver could be related to more cocaine use in this ci ty as compared to San Francisco. Cocaine users tend to be more dysfunct ional than heroin users injecting more than 20 times a day and therefore may be less l ikely to comply w i t h antiretroviral therapy . The principal reason fo r not get t ing sufficient subjects was the steep decline in hospital admissions o f gay/bisexual men w i t h H I V / A I D S . However , a development wh ich has impor tant implicat ions fo r future research also occurred at the same t ime, and therefore w i l l be discussed here. There was a steady increase in the hospital admissions o f I D U s w i t h H I V / A I D S in response to an epidemic o f H I V infection occurr ing in Vancouver 's d o w n t o w n eastside. Beg inn ing in 1989 a trend was noted that increasing numbers o f I D U s were being admit ted to St. Paul's Hospi tal , many for infections such as, cellulit is, sepsis, and endocardit is 22 (Beaufoy, 1993). A t that t ime the estimated F f l V prevalence was 1 to 2 % among Vancouver 's populat ion o f 6,000 to 10,000 I D U s (Cook, Patrick, & Rekart , 1996). I n 1994 retrospective audits by the Medical Records Department at the hospital indicated an average o f 43 IX)U discharges per month. Approximately hal f o f the admit t ing diagnoses were fo r illnesses or condit ions directly related to injection drug use w i t h cellul i t is/osteomyelit is account ing fo r 17.9% o f admissions, drug overdose 9.8%, endocardit is 4 .9%, and septicemia 4.1%). Twenty -one per cent were H I V seropositive. I n 1995 there was an average o f 64 I D U discharges per month o f w h o m 3 0 % were H I V seropositive. I n 1996 ( f r o m January to August inclusive) the upward trend continued w i t h an average o f 76 I D U discharges per mon th w i t h 43 % being H I V seropositive. A l though the propor t ion o f bacterial infections, such as cellul it is and endocarditis, remained stable there has been a steady increase in H I V infections among I D U s admitted to the hospital. The rising number o f I D U s w i th H I V infection seen in hospital reflected the rapid rise in H I V infect ion among I D U s being reported by the B.C. Centre for Disease Cont ro l since September 1994. Accord ing to surveillance o f H I V testing data, the p ropor t ion o f I D U s test ing seroposit ive rose f r o m 2 % to 7% in an eighteen month per iod (Strathdee et al., in press). This outbreak o f H I V infection occurred despite the implementat ion o f a needle exchange program and a street nurse program in 1988 and 1989, respectively (Bardsley, Turvey, & Blatherwick, 1990). The Point Project was init iated in 1995 to investigate the outbreak. This study found that I D U s who developed H I V infect ion were more l ikely to have shared needles, used cocaine, l ive in a d o w n t o w n hotel, and to have experienced infections such as endocarditis, abcess, cellulitis, Hepatit is B, and Hepat i t is A (Patr ick, 1995). I D U s w i t h these infections are most l ikely to be admitted to hospital presenting a " w i n d o w o f oppor tun i ty " fo r prevention education. The Vancouver In ject ion D r u g Use Study ( V I D U S ) , a prospective cohor t study (Strathdee et al., in press), was initiated in 1996 to investigate the potential fo r cont inued H I V transmission among I D U s in Vancouver. As o f February, 1997 the H I V seroprevalence 23 rate was 2 3 % among the 1006 I D U s part icipating in the study. For ty per cent o f bo th H I V posit ive and H I V negative I D U s reported lending used needles and 3 9 % o f H I V negative I D U s bo r rowed used needles w i th in the previous 6 months. Factors predict ive o f H I V seroposit iv i ty included: more frequent cocaine injection, l o w education, unstable housing, commercial sex, bo r row ing needles, injecting more than 2 years, inject ing w i t h others, and frequent needle exchange attendance. The researchers concluded that the H I V outbreak was cont inuing among Vancouver's I D U s and that in addit ion to needle exchanges, a comprehensive prevent ion program should include counselling, support, and education. I n addi t ion to fewer numbers o f gay/bisexual men than expected fo r the study, more patients than expected did not meet the selection criteria for the sample. Some patients were not cogni t ively intact or were rated less than 60 on the Karnofsky Performance Status Inventory indicat ing that they were not sufficiently wel l to participate in the management o f their health care. The opening o f the new H I V / A I D S ward in February 1997 faci l i tated the project by having the major i ty o f H I V / A I D S patients in one geographical area. However , the fo rmat ion o f a new mult idiscipl inary team, w i t h physicians unfamil iar w i t h the hospital and the patient populat ion, adversely affected identifying potential subjects w i th in 72 hours o f discharge since the discharge date was often unknown or suddenly changing. I n addit ion, the nature o f the disease characterized by unexpected changes in the medical condi t ion made the discharge date di f f icul t to predict wh ich also resulted in the loss o f potential subjects. F r o m a rev iew o f the weekly A I D S Care Rounds, dur ing the 10 weeks o f data col lect ion there were 94 discharges f r o m the H I V / A I D S ward for a total o f 86 patients since 6 individuals had more than one hospital stay. O f the 86 patients, 48 (56 % ) were I D U s , 4 ( 5 % ) patients were non I D U women, 14 (16%) patients were not cognit ively intact or rated be low 60 on the Karnofsky Performance Status Inventory, and 13 ( 1 5 % ) patients were not identi f ied w i th in 72 hours o f discharge. Five patients f r o m the H I V / A I D S ward and 3 patients f r o m the medical wards participated in the study. T w o patients w h o were approached did not wish to be enrolled in the project. I t is not k n o w n whether patients w i t h 24 H I V / A I D S admit ted to hospital dur ing the data col lect ion t ime is representative o f the hospital inpatient populat ion in the future. I n summary, since the conceptualization o f this project there has been a dramatic change in the patient populat ion w i t h H I V / A I D S which deterred col lect ion o f the required sample in a t imely fashion. The expanded use o f combination antiretroviral therapy and the in t roduct ion o f protease inhibitors has led to decreasing numbers o f gay/bisexual men w i t h H I V / A I D S being admitted to the hospital. A t the same t ime there has been an outbreak o f H I V infect ion among I D U s in Vancouver w i t h increasing numbers o f this populat ion admit ted to hospital. I n addit ion to a reduced total sample populat ion, more subjects than expected did not meet the selection criteria for the study. Therefore, data col lect ion was ended and the project analyzed as a pi lot study. D a t a Col lect ion Procedures The procedure for data col lect ion consisted o f the Nurs ing Clinician fo r H I V Care, the investigator: 1) ident i fy ing patients w h o were eligible for the study; 2) approaching potential subjects, explaining the study, and obtaining informed consent; and 3) having those subjects w h o wished to participate complete the coded questionnaire. The Nurs ing Clinician was the most suitable person to collect the data since she was on the ward daily, was aware o f all patients, and communicated w i t h all staff members. Training the staff nurses on the ward to collect the data w o u l d have required extensive education and generated an unreasonable w o r k l o a d fo r nurses on the new ward. The most di f f icul t part o f the data col lect ion procedure was the ident i f icat ion o f subjects w i th in 72 hours o f discharge. Because o f unpredictable changes in medical status, the number o f consultants involved in the decision making, and the inexperience o f the ward's newly hired physicians, the discharge day was often unknown or decided upon w i t h l i t t le not ice to the mult idiscipl inary team. Another factor was the work load o f the Nurs ing Cl inician made it di f f icul t for her to respond quickly to notices o f impending discharges. 25 The next step in the data col lect ion procedure, approaching potential subjects, explaining the study, and obtaining informed consent was generally conducted w i thou t any di f f icul ty. However , approaching and explaining a study about gay/bisexual in format ion needs to a subject w h o had only recently in formed his wi fe o f his bisexual or ientat ion and H I V diagnosis required great care and sensitivity. I n addit ion, the investigator felt some discomfor t in discussing a study focused on gay/bisexual patients w i t h these individuals when they were the minor i ty o f H I V / A I D S patients on the ward. Some gay/bisexual patients on the w a r d expressed fear about the presence o f large numbers o f I D U s . The investigator felt some concern that focusing a study on gay/bisexual men may draw unwanted attent ion to them. However , only one gay/bisexual subject w h o also injected cocaine stated that he thought that the study should be for injection drug users as wel l . The t w o patients w h o did not w ish to part icipate d id not feel they had any information needs. The last step o f the data col lect ion procedure involved having the subjects complete the self-administered questionnaire. A l l subjects completed the questionnaire w i th in 35 minutes and indicated that they understood the questions and directions. However , one subject missed one page o f the Patient Learning Need Scale ( P L N S ) wh ich resulted in no responses to fou r o f the subscales. Another subject fai led to answer four items on the Prof i le o f M o o d States ( P O M S ) . However , each i tem pertained to a different subscale and the P O M S is considered val id i f no more than t w o o f the items per subscale are left blank ( M c N a i r et al., 1992). The blank items were assigned the mean value achieved fo r that i tem by the tota l sample. A l t hough the subjects stated that they had no questions about the questionnaire the investigator should have checked the questionnaires more carefully for unanswered items. On ly one newly diagnosed subject commented that one question mentioned "death" on the P L N S (question 32) wh ich did not distress h im, but surprised him because he had not thought about it. This subject stated that he had a strong support system and did not want a referral fo r counseling. 26 In summary, the data collection procedures were generally adequate. The greatest difficulty encountered was the identification of potential subjects within 72 hours of discharge allowing the Nursing Clinician sufficient time to approach subjects about the study. The workload of the Nursing Clinician prevented her from responding quickly to notice of impending discharges. This weakness in the data collection procedure could be ameliorated by a research assistant who would be able to follow up quickly on discharges. No difficulty was encountered in approaching potential subjects, explaining the study, and obtaining informed consent. The self-administered questionnaire was understood and well received by the sample. However, more care should have been exercised by the investigator in checking for unanswered questions. 27 Chapter V : Results A t the t ime the decision was made to cease data col lection, 8 subjects had been interv iewed in a 10 week period. Because the project was a pi lot, analysis o f the data o f the 8 subjects was conducted to assess data analysis procedures. Sample Characteristics o f the 8 subjects in the sample are described in Table 1. The subjects ranged in age f r o m 32 to 57 (M = 42.13, S D = 9.17). A t least ha l f o f the sample had completed university or a post-secondary educational program, were unemployed, and l ived alone. W i t h i n one month o f part icipating in the study, 4 subjects not only tested H I V seroposit ive, but had been diagnosed w i t h Pneumocystis cariini pneumonia g iv ing them an A I D S diagnosis. I n later analyses, these subjects are referred to as new diagnoses o f H I V infect ion. T w o o f these individuals were aware o f their C D 4 counts and reported these counts to be 170 and 60 (normal C D 4 > 500 per cubic mil l imetre o f b lood) . The remaining 4 subjects tested H I V seropositive f r o m 6 months to 10 years ago and only one individual had an A I D S diagnosis. A l l were aware o f their C D 4 counts wh ich ranged f r o m 490 to 75 (M_= 291.00, SD = 195.98). These subjects are referred to as previous diagnoses o f H I V infect ion in later analyses. T w o o f these subjects had previous H IV- re la ted hospitalizations. Subjects had been prescribed a mean o f six medications (SD = 2.94) by their physicians dur ing the previous 30 days before hospitalization. Subjects were not asked whether they were tak ing antiretroviral medications. Patient Learn ing Needs Scale The overal l and subscale scores o f the Patient Learning Needs Scale ( P L N S ) are reported in Table 2 fo l l owed by comparisons or correlations o f the scores by sociodemographic and il lness-related variables. Subjects demonstrated a range o f learning needs at the t ime o f discharge. The mean tota l P L N S score was 140.71 (SD = 28.94) f rom a possible score o f 200. Subscale scores o f the P L N S are out l ined in Table 2. 2 8 Table 1 Demographics and Illness-related Variables (N=8) Variable % Age 30-39 40-49 50-59 5 1 2 62.5 12.5 25.0 Education less than high-school high-school post-secondary Employment status unemployed employed Living arrangements alone alone with support with partner/friend Stage of disease New diagnosis of HIV infection Previous diagnosis of HIV infection Previous HIV-related hospitalizations None 1-4 Medications prescribed prior to hospitalization none 1-4 5-9 2 2 4 5 3 5 1 2 4 4 6 2 2 4 2 25.0 25.0 50.0 62.5 37.5 62.5 12.5 25.5 50.0 50.0 75.0 25.0 25.0 50.0 25.0 29 T a b l e 2 Scores o n the P a t i e n t L e a r n i n g Need Scale Scores N o . o f i tems M S D R a n g e N T o t a l score 40 140.71 28.94 9 8 - 1 8 2 7 Subscales S u p p o r t / c a r e 10 32.57 6.78 2 5 - 4 5 7 i n c o m m u n i t y M e d i c a t i o n s 8 29.00 8.14 1 8 - 3 8 7 T r e a t m e n t / 8 29.29 6.42 2 2 - 3 7 7 act iv i t ies o f l i v i n g C o m p l i c a t i o n s / 8 30.63 5.66 s y m p t o m s I l l ness - re la ted 6 18.88 4.19 concerns 2 2 - 3 8 1 1 - 2 4 8 30 Sociodemographic Variables Based upon the Pearson product-moment coefficient, there was a negative relationship between age and the total P L N S scores; a negative correlat ion also exists w i t h all the subscale scores suggesting that as age increases the importance o f in format ion decreases. However , none o f these correlates are statistically significant (Table 9). Subjects w i t h post-secondary education had slightly higher mean scores on the total P L N S and on the subscales o f medications, treatments and activities o f l iv ing, and complicat ions and symptoms than those w i t h no post-secondary education. N o significant differences were found between the t w o groups (Table 3). Subjects w h o were employed as compared to those w h o were not had higher mean scores on the tota l P L N S and on all subscales except illness-related concerns as described in Table 4. The standard deviations for all scores o f the unemployed subjects were higher than the employed subjects reflecting greater variat ion w i th in the group. N o significant differences were found between the t w o groups. The mean scores on the total P L N S and on all subscales except il lness-related concerns were higher fo r subjects l iv ing w i t h a partner/fr iend than fo r those l iv ing alone. The standard deviations fo r all scores o f individuals l iv ing alone tended to be higher than fo r those l iv ing w i t h a partner/fr iend indicating greater variat ion w i th in this group. N o significant differences were found between the t w o groups (Table 5). I l lness-related Variables The mean scores o f the total P L N S and all subscales were higher for subjects w i t h a new H I V diagnosis as compared to subjects w i t h a previous H I V diagnosis (see Table 6). Greater var iat ion in scores on the total P L N S and all subscales was observed among subjects w i t h a previous H I V diagnosis than fo r subjects w i t h a new diagnosis. N o significant differences were found between the t w o groups. A negative relationship was found between number o f previous H I V - related hospital izations and the total and subscale P L N S scores indicating that as the number o f 31 T a b l e 3 Di f fe rences i n M e a n s o f the Pa t ien t L e a r n i n g Needs Scale a n d Subjects w i t h D i f f e r e n t E d u c a t i o n a l Leve ls Post -secondary Less t h a n (n = 4) pos t -secondary (n = 4) Scores M SD S D t - test n T o t a l score 143.00 12.53 139.00 39.51 -0.17 0.87 Subscales S u p p o r t / c a r e i n c o m m u n i t y 31.67 3.06 33.25 9.18 0.28 0.79 M e d i c a t i o n s 31.00 2.65 27.50 11.00 -0.53 0.62 T r e a t m e n t / ac t iv i t ies o f l i v i n g 29.67 6.81 29.00 7.16 -0.12 0.91 C o m p l i c a t i o n s / s y m p t o m s 31.50 3.11 29.75 7.93 -0.41 0.70 I l l ness - re la ted concerns 18.25 2.50 19.50 5.80 0.40 0.71 *_E <05 32 Table 4 Differences in Means of the Patient Learning Needs Scale and Employed/Unemployed Subjects Employed Unemployed (n = 3) (n = 5) Scores M SD M SD t-test p Total score 149.50 7.78 137.20 34.46 0.47 0.66 Subscales Support/care 33.00 2.83 32.40 8.17 0.10 0.93 community Medications 31.50 3.54 28.00 9.59 0.48 0.65 Treatment/ 33.50 2.12 27.60 6.95 1.12 0.31 activities of living ,'?! s Complications/ 32.00 3.61 29.80 6.87 0.50 0.63 symptoms Illness-related 18.00 3.00 19.40 5.03 -0.43 0.68 concerns *p_<05 33 T a b l e 5 D i f fe rences i n M e a n s o f the Pa t i en t L e a r n i n g Needs Scale a n d Sub jec ts ' L i v i n g A r r a n g e m e n t s L i v i n g a lone W i t h p a r t n e r / ( n = 6) f r i e n d (n = 2) Scores M SD M SD t - test p_ T o t a l score 137.20 34.46 149.50 7.78 -0.47 0.66 Subscales S u p p o r t / c a r e 32.40 8.17 33.00 2.83 -0.10 0.93 i n c o m m u n i t y M e d i c a t i o n s 28.00 9.59 31.50 3.54 -0.48 0.65 T r e a t m e n t / 27.60 6:95 33.50 2.12 -1.12 0.31 ac t iv i t ies o f l i v i n g C o m p l i c a t i o n s / 29.67 6.15 33.50 3.53 -0.81 0.45 s y m p t o m s I l l ness - re la ted 19.17 4.54 18.00 4.24 0.32 0.76 concerns *_p_<.05 34 T a b l e 6 D i f fe rences i n M e a n s o f the Pa t i en t L e a r n i n g Needs Scale a n d Sub jec ts ' H I V D iagnos is N e w H I V Prev ious H I V d iagnosis d iagnosis (n = 4) (n = 4) Scores M SD M SD t - t e s t p_ T o t a l score 153.67 9.07 131.00 36.42 -1.03 0.35 Subscales S u p p o r t / c a r e 34.00 2.65 31.50 9.15 -0.45 0.67 i n c o m m u n i t y M e d i c a t i o n s 33.00 3.61 26.00 9.80 -1.16 0.30 T r e a t m e n t / 33.33 1.53 26.25 7.23 -1.63 0.16 ac t iv i t ies o f l i v i n g C o m p l i c a t i o n s / 32.75 3 3 0 28.50 7.19 -1.07 0.32 s y m p t o m s I l l ness - re la ted 19.00 3.16 18.75 5.56 -0.08 0.94 concerns *_p < .05 35 previous hospitalizations increased the importance o f in format ion decreased. A posit ive relationship was found between the number o f medications prescribed before hospital izat ion and the tota l and all subscale P L N S scores except treatment/activit ies o f l iv ing. N o significant relationships were found between total and subscale P L N S scores and the number o f previous Ff lV-re la ted hospitalizations and number o f medications prescribed before hospital izat ion (Table 9) . Results f r o m the sample suggest that moods were affected by being H I V seroposit ive w i t h ratings o f to ta l m o o d states averaging 35.75 (SD = 26.11) out o f a possible tota l score o f 100. Subscale scores o f the Prof i le o f M o o d States ( P O M S ) are displayed in Table 7. The mean tota l P O M S score was lower in the newly diagnosed subjects than in the previously diagnosed, but there was greater variat ion in the scores o f the newly diagnosed as out l ined in Table 8. This was predominantly due to lower scores for the subscales tension, depression, and anger. N o significant differences were found between newly diagnosed and previously diagnosed subjects. Based upon the Pearson product-moment coefficient, a posit ive relationship was found between to ta l and subscale P L N S scores and total and subscale P O M S scores indicat ing that as m o o d disturbances increased so did the importance o f informat ion (Table 9). However , none o f these relationships were statistically significant. 36 T a b l e 7 Scores o n the P r o f i l e o f M o o d States ( N = 8 ) Scores N o . o f i tems ,' M S D R a n g e T o t a l score 30 35.75 26.11 0-80 Subscales T e n s i o n 5 9.13 6.38 0 - 1 9 Depress ion 5 7.75 6.50 0-20 A n g e r 5 6.00 5.86 0-16 F a t i g u e 5 10.88 5.36 0-17 C o n f u s i o n 5 8.38 3.93 2-15 V i g o u r 5 6.38 3.42 0-11 * p < . 0 5 T a b l e 8 D i f fe rences i n M e a n s o f the P r o f i l e o f M o o d States a n d Sub jec ts ' H I V D iagnos is N e w H I V Prev ious H I V diagnosis Diagnos is ( n = 4) ( n = 4) Scores M S D M S D t - t e s t E T o t a l score 32.50 36.16 39.00 15.98 0.33 0.75 Subscales T e n s i o n 8.25 7.93 10.00 5.48 0.36 0.73 Depress ion 6.75 9.21 8.75 3.30 0.41 0.70 A n g e r 5.00 • -7.44 7.00 4.69 0.45 0.67 F a t i g u e 11.00 7.53 10.75 3.20 -0.06 0.95 C o n f u s i o n 8.25 5.85 8.50 1.29 0.08 0.94 V i g o u r 6.75 2.50 6.00 4.55 -0.29 0.78 *_p_<.05 38 Table 9 Correlation of Patient Learning Needs and Subject Characteristics Scale Total Score Subscales Support/care in community Medications Treatments/ activities of living Complications/ symptoms Illness-related concerns Coefficients Age -.59 -.49 -.38 -.73 -.46 -.62 No. of meds prior to hosp .27 .42 .32 -.06 .27 .27 No. HIV related hosp -.47 -.46 -.23 -.72 -.34 -.35 POMS .47 .48 .56 .33 .40 .25 * p. <.05 39 Chapter V I : Discussion Pr ior to discharge gay/bisexual inpatients w i th H I V / A I D S expressed a high degree o f in format ion needs related to managing their care at home. The mean tota l Patient Learn ing Needs Scale ( P L N S ) score was 140.71 f r o m a possible score o f 200. The mean total P L N S score fo r a sample o f 151 male adult medical and surgical patients fo r w h o m the or iginal P L N S was designed was 149 f r o m a possible score o f 250 (Bubela et al., 1990a). The original P L N S was refactored and the items reduced f r o m 50 to 40. A l t hough the possible tota l P L N S score was reduced by 2 0 % when the too l was revised, the mean tota l score for the subjects in this pi lot study was reduced by only 5%. This suggests that the subjects in this p i lot study had more learning needs than the male medical and surgical patients in the original study. The subjects in this pi lot study had more informat ion needs than a sample o f 38 patients after peripheral arterial bypass surgery whose mean total P L N S score was 156.2 f r o m a possible score o f 250 (Gal loway et al., 1995) and similar in format ion needs compared t o 40 patients after surgery fo r lung cancer whose mean total P L N S score was 179.2 f r o m a possible score o f 250 (Gal loway et al., 1993). The sample o f this pi lot study was not large enough to find significant differences between subjects' P L N S scores and demographics and il lness-related variables. The high level o f importance placed on informat ion at the t ime o f hospital discharge by gay/bisexual men is compatible w i t h Lazarus and his associates' (Cohen & Lazarus, 1979; Lazarus & Launier, 1978; M o n a t & Lazarus, 1991) postulat ion that in format ion seeking is a coping strategy used by some individuals in stressful situations and provides a basis fo r tak ing act ion or fo r making the situation seem more under control . The high need fo r informat ion by gay/bisexual men in this pi lot study is also supported by studies o f gay/bisexual men attending hospital outpatient clinics in San Francisco in the mid 80s. These outpatients were found to have many informat ion needs and the in format ion they desired changed over t ime (Love joy & M o r a n , 1988; M o r a n , Love joy , Viele, D o d d , & Abrams, 1988). Ini t ial ly gay/bisexual men wanted informat ion about safe sexual practices 40 and later they were interested in learning ways to bui ld their immune systems. Another study found that the in format ion needs o f gay/bisexual outpatients w h o were H I V seroposit ive were signif icantly different f r o m those w i t h an A I D S diagnosis (Love joy , M o r a n , & Paul, 1988). I n addit ion, a relationship was found between a new A I D S diagnosis and frequent use o f self-care behaviors in gay/bisexual outpatients which led researchers to suggest that these individuals may be especially interested in self-care informat ion at this t ime (Love joy , Paul, Freeman, & Christianson, 1991). I n support o f this suggestion, a later study (Love joy , M o r g e n r o t h , Paul, Freeman, & Christianson, 1992) found gay/bisexual outpatients w h o increased their use o f self-care after becoming FfJV seropositive were those w h o were most active in their search fo r informat ion. The sample's mean tota l score on the Profde o f M o o d States ( P O M S ) was 35.75 out o f a possible to ta l score o f 100. The total mood score is useful as a single global estimate o f affective state. I n a study o f 481 male psychiatric outpatients ( M c N a i r et al., 1992) using the same version o f the shortened f o r m o f the P O M S the mean total score was 14.00 out o f a possible to ta l score o f 100. I n a study (Love joy et al., 1991) o f outpatient gay/bisexual men w h o were H I V seropositive an earlier version o f the shortened f o r m o f the P O M S (Shachum, 1983) was used to measure mood states and the mean total score was 13.82 out o f a tota l score o f 124. The mean total score o f the P O M S o f the subjects in this p i lot study was high compared to outpatients w i t h a psychiatric and H I V diagnosis. This difference may be related to the fact that the subjects in this pi lot study were in hospital fo r acute illnesses and this experience may generate higher levels o f mood disturbance. The high level o f m o o d disturbance in the subjects in the pi lot study was consistent w i t h the f indings o f other researchers (Katho l & Wenzel, 1992). Hospi ta l izat ion contr ibuted to m o o d disturbances as patients experienced a loss o f control related in part to the lack o f in format ion prov ided to them about their condi t ion (Taylor, 1979). Dennis (1987; 1990) has found that in format ion about diagnosis, treatment, and lifestyle implicat ions o f the disease was key in faci l i tat ing patients' sense o f control dur ing hospital ization. 41 I n summary, the gay/bisexual patients in this pi lot study felt substantial amount o f in format ion was needed to help them manage after hospital discharge. I n addi t ion, these individuals experienced a high degree o f emotional distress at this point in their hospital experience. Because o f the small sample size it was not possible to identi fy the demographic or il lness-related variables associated w i t h informat ion needs so that patients w i t h specific in format ion needs could be identif ied and interventions planned to enhance coping. 42 Chapter V I I : Impl icat ions o f the Pi lot Study and Recommendat ions Since the original study on the informat ion needs o f gay/bisexual inpatients was conceptual ized there has been a major change in the H I V / A I D S patient populat ion admitted to St. Paul's Hospi ta l . Du r ing 1995 and much o f 1996 the average daily census fo r H I V / A I D S patients was approximately 30, about two- th i rds o f w h o m were gay/bisexual men. However , by the t ime data col lect ion for the study began in M a y 1997, there was a steep decline in the number o f gay/bisexual patients admitted to the hospital in response to improved ant iretroviral therapies. Dur ing this t ime increasing numbers o f inject ion drug users ( I D U s ) w i t h H I V / A I D S were admitted to the hospital reflecting the ongoing outbreak o f H I V infect ion occurr ing in the community. Data col lect ion ceased when i t became apparent that an adequate sample size could not be achieved and the informat ion obtained thus far was analyzed as a pi lot study. The fo l l ow ing recommendations are based on an analysis o f the pi lot project. The number o f gay/bisexual men w i t h H I V / A I D S w h o w i l l require hospital care in the fu ture is unknown. A lso u n k n o w n is when, or if, the virus w i l l develop resistance to the new combinat ion retrovi ra l medications. What is k n o w n is that new H I V infections are still occurr ing in this populat ion. I n a recent study (Strathdee et al., 1997) o f young gay/bisexual men the H I V incidence rate was 3.6%, twice as high as expected. A l though the number o f gay/bisexual men w i t h H I V / A I D S admitted to the hospital has greatly diminished, those patients w h o were eligible fo r the project demonstrated a great need for informat ion and experienced a high degree o f m o o d disturbance. Therefore, determining the in format ion needs o f this populat ion is important , but obtaining an adequate sample size w i l l require more t ime than was available fo r this project. I n addit ion, the sample o f subjects needs to be broadened to include not only I D U s , but all individuals w i t h H I V / A I D S n o w in the hospital. For example, in the retrospective review o f patients w i t h H I V / A J D S on the ward dur ing data col lect ion, four female patients were infected w i t h H I V through heterosexual partners. Heterosexual transmission continues to be the most frequent risk factor for w o m e n in Canada. 43 The data col lect ion procedure and instrument also needs to be revised in a fu l l study to accommodate the shift in the demographics o f the prospective sample. I t is estimated that 4 0 % o f inject ion drug users in the D o w n t o w n Eastside are il l i terate (Br i t ish Columbia Task Force into I l l ic i t Narcot ic Overdose Deaths in Br i t ish Columbia, 1994). Therefore, the questionnaire should be administered by an interviewer rather than self-administered as in the pi lot study. The Vancouver Inject ion D r u g Use Study also employed interviewers to administer questionnaires (Strathdee et al., in press). A ful l study w o u l d require a research assistant w h o w o u l d see all H I V / A I D S patients on the ward w h o were identi f ied as meeting the cr i ter ia for the study, obtain informed consent, and administer the questionnaire. 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Potential predictions o f information-seeking behavior by homosexual/bisexual (gay) men w i t h human immunodeficiency virus seropositive health status. Cancer Nurs ing. 15, 116-124. Love joy , N.C. , Paul, S., Freeman, E., & Christianson, B. (1991). Potential corelates o f self-care and symptom distress in homosexual/bisexual men w h o are F f l V seropositive. Onco logy Nurs ing Forum. 18. 1175-1185. M c K u s i c k , L., Hors tman, W. , & Coates, T.J. (1985). A I D S and sexual behavior reported by gay men in San Francisco. American Journal o f Public Heal th. 75. 493-496. M c N a i r , D. (1971). Edits manual for the prof i le o f mood states. San Diego, C A : Educat ional and Industr ial Testing Services. M c N a i r , D. , L o r r , M . , & Droppleman, L. (1992). Edits manual fo r the prof i le o f m o o d states. San D iego, C A : Educational and Industrial Test ing Services. M i l le r , S .M. , & Mangan, C E . (1983). Interacting effects o f in format ion and coping style in adapting to gynecologic stress: Should the doctor tell all? Journal o f Personality and Social Psychology. 45, 223-226. M o n a t , A . , & Lazarus, R.S. (1991). Stress and coping - Some current issues and controversies. I n A. M o n a t & R.S. Lazarus (Eds.), Stress and coping: A n anthology (pp. 1-15). N e w Y o r k : Columbia Universi ty Press. M o r a n , T .A. , Love joy , N , Viele, C.S., D o d d , M.J. , & Abrams, D . I . (1988). Onco logy Nurs ing Forum. 1_5, 311-314. Patr ick, D. (1995, November) . A n outbreak o f H I V in drug users in Br i t ish Columbia. Paper presented at the 9th annual Br i t ish Columbia H I V / A I D S conference, Vancouver, B.C. Pol i t , D. , & Hungler , B. (1991). Nurs ing research: Principles and methods (4th ed.). Philadelphia: L ipp incot t . Ragsdale, D., & M o r r o w , J.R. (1990). Quali ty o f l ife as a funct ion o f H I V classification. Nurs ing Research. 39, 355-359. 48 Redman, B.K. (1993). Patient education at 25 years; where we have been and where we are going. Journal o f Advanced Nurs ing. 18, 725-730. Shachum, S. (1983). A shortened version o f the prof i le o f m o o d states. Journal o f Personali ty Assessment. 47. 305-306. Shott, S. (1990) . Statistics fo r health professionals. Philadelphia: W . B . Saunders. Siegel, K., & Krauss, B.J. (1991). L i v ing w i t h H I V infection: Adapt ive tasks o f seroposit ive gay men. Journal o f Heal th and Social Behavior. 32. 17-32. Strathdee, S., Mart indale, S., H o g g , R., Cornelisse, P., Egan, J., Cook, D., Rekart , M . , Montaner , J., O'Shaughnessy, M . , & Schechter, M . (1997). H I V prevalence, incidence and risk behaviors among a cohort o f young gay/bisexual men. The Canadian Journal o f Infectious Diseases. 8(Suppl. A ) , 2 4 A . ( F r o m the 6th Annual Canadian Conference on H I V / A I D S Research, 1997, Abstract N o . 204) Strathdee, S., Patr ick, D., Currie, S., Cournelisse, P., Rekart, M . , Montaner , J., Schechter, M . , & O'Shaughnessy, M . ( in press). Needle exchange is not enough: Lessons f r o m the Vancouver injection drug study. A I D S . Strathdee, S., Schechter, M . , H o g g , R., & O'Shaughnessy, M . (1994). Current trends in H I V / A I D S epidemiology in Br i t ish Columbia. B.C. Medica l Journal. 36 (2) , 98-115. Taylor , S. (1979). Hospi ta l patient behavior: Reactance, helplessness, or control? Journal o f Social Issues. 35. 156-184. Wi lson-Barnet t , J. (1978). Factors influencing patients' emotional reactions to hospital ization. Journal o f Advanced Nurs ing. 3, 221-229. W o n g , E., M a c Dougal l , M . , Patrick, D., & Rekart, M . (1996). A I D S update quarterly report : First quarter. Vancouver, B.C.: Br i t ish Columbia Centre fo r Disease Cont ro l . 49 Appendix A Pat ien t Ques t i onna i re C O D E No . P a r t 1 : Pa t ien t I n f o r m a t i o n T h i s p a r t o f the ques t ionna i re askes quest ions a b o u t y o u a n d y o u r i l lness. 1. A g e years 2. What is the highest level o f schooling you have ever completed? grade 8 or lower some high school completed high school some post-secondary completed non-university post-secondary completed university degree completed university post-graduate degree 3. Employment status unemployed employed less than 30 hours per week employed 30 hours or more per week 4. L i v i n g arrangements alone alone w i t h support f r o m friends/family w i t h partner/fr iend w i t h parents other, please describe 5. N u m b e r o f months since you have been aware o f being H I V posit ive less than 1 month 1 to 10 months more than 10 months I f more than 10 months please state month year 51 6. Number o f months since you have received an A I D S diagnosis have not had an A I D S diagnosis less than 1 month 1 to 10 months more than 10 months I f more than 10 months please state month year 7. What is your last k n o w n C D 4 count? When was the C D 4 count done? 8. Have you been hospitalized before this admission w i t h an H IV- re la ted illness? _ N o _ Y e s I f yes, h o w many times have you been hospitalized? 9. Please state the number o f medications that your doctor has prescribed for y o u dur ing the previous 30 days before coming to the hospital? 5 2 Part 2 : Patient Learning Need Scale At hospital discharge, many people have some questions about how to manage once they are at home. Different people have questions about different things. The following is a list of things which some people like to know in order to care for themselves at home. For each item indicate how important it is for you to learn about before going home. Please rate how important each item is to know about before go ing home. In order to manage my care at home it is important for me to know: 1. What to do if I have t rouble urinating. 2. How to prepare the foods I a m to eat. 3. How to prevent a compl icat ion f rom occurr ing. 4. How to take each medicat ion. 5. What s y m p t o m s I may have related to my illness. 6. W h e n to take each medicat ion. 7. How this illness will affect my life. 8. How to recognize a compl icat ion. 9. How this illness will affect my future. 10. How to care for my feet properly. 1 1 . What compl icat ions might occur f rom my illness. 12. How to recognize my feelings toward my illness. 13. How to contact commun i ty g roups for my health condi t ion. 14. W h e n I can take a bath or a shower. 15. How to tale to family/fr iends about my illness. 16. How m u c h rest I shou ld be gett ing. 17. How to get th rough the "red tape" in the health care system. 18. What the possible s ide effects of my treatment are 19. What to do if I have t rouble with my bowels. 20. What to do if I cannot sleep properly. 1 = not important 2 = slightly important 3 = moderately important 4 = very important 5 = extremely important 1 2 3 4 5 1 2 3 4 5 1 2 3 4 5 1 2 3 4 5 1 2 3 4 5 1 2 3 4 5 1 2 3 4 5 1 2 3 4 5 1 2 3 4 5 1 2 3 4 5 1 2 3 4 5 1 2 3 4 5 1 2 3 4 5 1 2 3 4 5 1 2 3 4 5 1 2 3 4 5 1 2 3 4 5 1 2 3 4 5 1 2 3 4 5 1 2 3 4 5 54 1 = not important 2 = slightly important 3 = moderately important 4 = very important 5 = extremely important In order to manage my care at home it is important for me to know: 2 1 . How to m a n a g e the symp toms I may experience. 22. How I can avoid stress. 23. What physical exercise I shou ld be gett ing. 24. What the purposes of my t reatment are. 25. Why I need to take each medicat ion. 26. Where I can get my medicat ion. 27. Where I can get help in handl ing my feel ings about my il lness. 28. Wh ich foods I can and cannot eat. 29. How to prevent my skin f rom gett ing red. 30. Wh ich vi tamins and supplements I shou ld take. 3 1 . How to get th rough the "red tape" to get services at home. 32. W h o to talk to about my concerns about death. 33. How to prevent my skin f rom gett ing sore. 34. How to m a n a g e my pain. 35. W h e n to s top tak ing each medicat ion. 36. How each medicat ion works . 37. What to do if I ^lave a react ion to a medicat ion. 38. What physical activities I cannot d o such as lifting. 39. The possib le react ions to each medicat ion. 40. Where I can get help for family to deal wi th my illness. 1 2 3 4 5 1 2 3 4 5 1 2 3 4 5 1 2 3 4 5 1 2 3 4 5 1 2 3 4 5 1 2 3 4 5 1 2 3 4 5 1 2 3 4 5 1 2 3 4 5 1 2 3 4 5 1 2 3 4 5 1 2 3 4 5 1 2 3 4 5 1 2 3- 4 5 1 2 3 4 5 1 2 3 4 5 1 2 3 4 5 1 2 3 4 5 1 2 3 4 5 55 Part 3 : Profile of Mood States This part of the questionnaire askes questions about how you are feeling emotionally. 56 Below is a list of words that describe feelings people have. Please read each one carefully. Then fill in ONE circle under the answer to the right which best describes HOW YQU HAVE BEEN FEELING DURING THE PAST WEEK INCLUDING TODAY. : The n u m b e r s refer to these phrases. © = Not at all 0 = A little © = Moderately © = Quite a bit © = Extremely Not at all A little Moderately Quite a bit Extremely Not at all A little Moderately Quite a bit Extremely Not at all A little Moderately Quite a bit Extremely 1. T e n s e . . . • •©©©©© 1 2 . U n e a s y . . . •©©©©© 2 3 . W e a r y . . . . ©©©©© 2 . A n g r y . . . • -®o®®© 1 3 . F a t i g u e d . . •©©©©© 2 4 . B e w i l d e r e d . . ©©©©© 3 . W o r n o u t • ©0©©© 1 4 . A n n o y e d . . •©©©©© 2 5 . F u r i o u s . . . . ©0©®© 4 . L i v e l y . . . • ©0©©© 1 5 . D i s c o u r a g e d •©©©©© 2 6 . E f f i c i e n t . . . ®©©@® 5 . C o n f u s e d • ©©©©© 1 6 . N e r v o u s . . •©©©©© 2 7 . F u l l o f p e p . . ©©©©© 6 . S h a k y . . . • ©©©©© 1 7 . L o n e l y . . . •®0©®® 2 8 . B a d - t e m p e r e d ®®®®® 7 . S a d • ®o©©© 1 8 . M u d d l e d . . •©©©©© 2 9 . F o r g e t f u l . . . ®©@®© 8 . A c t i v e . . . • ©0©©© 1 9 . E x h a u s t e d •©©©©© 3 0 . V i g o r o u s . . . ®o®®® 9 . G r o u c h y . . • ©©©©© 2 0 . A n x i o u s . . . •®0®©® 1 0 . 1 1 . E n e r g e t i c U n w o r t h y • ©©©©© • ©0©©© 2 1 . 2 2 . G l o o m y . . . S l u g g i s h . . •©©©©© •®0©©© M A K E SURE YOU HAVE ANSWERED EVERY ITEM. (ffl [ v POMS COPYRIGHT© 1989 EdITS/Educational and Industrial Testing Service, San Diego, CA92107. ^1^® Reproduction of this form by any means strictly prohibited. SHORT FORM A C D F T V .57 Appendix B Karnofsky Performance Status P l e a s e c i r c l e t h e n u m b e r t h a t m o s t c l o s e l y a p p r o x i m a t e s t h e p a t i e n t c o n d i t i o n . Definition Criteria Able to carry on normal activity and to work. No special care is needed Unable to work. Able to live at home, care for most personal needs. A varying amount of assistance is needed. Unable to care for self. Requires equivalent of institutional or hospital care. Disease may be progressing rapidly. 100 Normal; no complaints; no evidence of disease. 90 Able to carry on normal activity; minor signs or symptoms of disease. 80 Normal activity with effort; some signs or symptoms of disease. 70 Cares for self. Unable to carry on normal activity or to do active work. 60 Requires occasional assistance, but is able to care for most of his needs. 50 Requires considerable assistance and frequent medical care. 40 Disabled: requires special care and assistance. 30 Severely disabled; hospitalization is indicated although death is not imminent. 20 Very sick: hospitalization is necessary; active supportive treatment is necessary. 10 Moribund; fatal processes progressing rapidly. Dead. 58 Appendix C I n f o r m e d Consent Ti t le: The in format ion needs o f homosexual/bisexual men w i t h H I V / A T D S at the t ime o f hospital discharge. Invest igator: Rosemarie Riddel l , R.N. , M .S .N . Student Y o u have been asked to participate in a research study being conducted fo r a graduate thesis. Part ic ipat ion in this study is entirely voluntary. Y o u may decide not to part icipate or may w i t h d r a w f r o m the study at any t ime w i thout affecting your medical or nursing care. Purpose Over the last 20 years patients have shown increased interest in receiving in format ion about health care. Some o f the reasons that patients want more in format ion could be due to : 1) the increase in long- term illnesses that they and their families need to manage at home; 2) shortened hospital stays that mean more care needs to be done at home; and 3) the bel ief that appropriate in format ion helps people to cope better w i t h the stress o f illness. Studies have shown that gay and bisexual men w i t h H I V / A I D S want in format ion about h o w to manage their illness and that the specific informat ion that they want has changed over t ime I t has also been shown that the informat ion health professionals believe gay and bisexual men need about their illness is not always the same as the informat ion desired by these individuals. A recent patient satisfaction survey at St. Paul's Hospi ta l found that many patients were not satisfied w i t h the in format ion that was provided by care givers at the t ime o f discharge f r o m the hospital. However , the survey did not explore what specific in format ion patients desired at discharge.The purposes o f this study are: 1) to investigate the in format ion needs o f gay and bisexual men w i t h H I V / A I D S on discharge f r o m hospital in regard to managing their care at home and 2) t o explore the factors that may influence informat ion needs, such as stage o f disease or emotional state. Since no studies have examined the in format ion needs o f these 59 individuals at the t ime o f discharge, the findings f r o m this study could provide nurses w i t h the knowledge necessary to provide education to meet these needs in the future. Procedures Y o u w i l l be asked to complete a questionnaire that w i l l take approximately 35 minutes. The questionnaire consists o f three parts. The first part asks questions about you and your illness. The second part asks questions about how important it is for you to learn about different things in order to care fo r yoursel f at home after discharge f r o m hospital. The th i rd part asks questions about h o w you are feeling emotionally. Risks There may be some discomfort or stress in being asked to th ink about problems and feelings related to your illness. I f you feel stressed by part icipating in the study, referrals can be made to individuals you believe w o u l d be useful in helping you deal w i t h the stress. Potent ial Benefi ts There w i l l be no direct benefits to you f r o m part icipating in the study. However , by complet ing the questionnaire you may be reminded o f in format ion that you need to obtain about your care at home after discharge f r o m the hospital. I t is hoped that the f indings f r o m this study w i l l contr ibute to the development o f educational materials that w i l l be helpful to gay and bisexual men after discharge f r o m the hospital. Mone ta ry Compensat ion There w i l l be no monetary compensation for part icipation in the study. Conf ident ia l i ty A l l in format ion collected for this study wi l l be kept strictly confidential. Nei ther your name nor initials w i l l appear on the questionnaire used for the study. The questionnaire w i l l be assigned a code number and w i l l be kept at all times in a confidential file only accessible to the study investigator and members o f her thesis committee. The investigator's copy o f your signed consent w i l l be kept in a separate confidential file and w i l l be destroyed after the study has been completed. N o names or initials w i l l be used in any reports result ing f r o m the study. 60 I f y o u have any questions or concerns about the study, you may contact the investigator, Rosemarie Riddel l , St. Paul's Hospi ta l at 682-2344, extension 2008 or the chair o f her thesis commit tee Sonia Acorn , R N , PhD, Associate Professor, U B C at 822-7457. In addi t ion, you may also contact Pamela Mi l ler , Patient Care Manager (Wards 10C, 10D, 8C) , St. Paul's Hospi ta l at 682-2344, extension 2293. I have read the above informat ion and I have had the oppor tuni ty to ask questions to help me understand what m y part ic ipat ion wou ld involve. I freely consent to part icipate in the study and acknowledge receipt o f a copy o f the consent fo rm. Signature o f the Participant Date Signature o f the Witness Date 

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