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' ‘ ‘ ‘ " h . l' - . ‘ -. . . . . ‘ v - ‘ l O ' 0. - O ‘ ' ¢ ~ ’ ' . . .' ~ . .‘ 0' " . . . . . ~ ' ~ ’ . - o o 1 , - - . . . . . ‘ 0 . - o - ' ' .. , ‘ ‘ u 0 ' n ‘ H . - . ' . ‘ _ _ . ‘ , .I i < ‘ ‘ ‘ ASSESSMENT ror-Wo'm Wrmmviw mm: ‘ f » , r snuwmm ozmsn ‘ :_. i 'V -f i - f I (“LAURA-Ms-BRI’SBOE— :f‘ ‘A‘Mflmmu‘m‘;“““‘._ w ”A - -‘ h- — '0‘. m1 LIBRARY t Michigan State University PLACE IN RETURN Box to remove this checkout from your record. TO AVOID FINES return on or before date due. MAY BE RECALLED with earlier due date if requested. DATE DUE DATE DUE DATE DUE 11 J £41828 30350 6 6/01 c:/CIRC/DateDue.p65.p.15 ‘ contact or NURsmF ACADEMIC AFFAIRS ASSESSMENT OF WOMEN WITH HIV IN PRIMARY CARE By Laura M. Brisboe A SCHOLARLY PROJECT Submitted to Michigan State University in partial fulfillment of the requirements for the degree of MASTERS OF SCIENCE IN NURSING 1998 ABSTRACT ASSESSMENT OF WOMEN WITH HIV IN PRIMARY CARE By Laura M. Brisboe HIV infection is rising among women. Opportunistic infections and death can result from an immune system rendered ineffective by HIV. Differences in how HIV manifests in the body have been found in women. Women, especially those in ethinic minority groups and those living in poverty, may be without primary health care. These groups are disproportionately infected with HIV. HIV positive individuals without access to care suffer from more severe opportunistic infections and an increase in mortality. There is not a cure for HIV, but with appropriate management, an individual can live many productive years afier their initial diagnosis of HIV. Advanced Practice Nurses can assist in the care of HIV infected women and serve many roles to increase their access to appropriate care as well as improve health out- comes. Using the revised Health Promotion Model as a framework for assessment of the HIV infected woman, the Advanced Practice Nurse can assist each woman to maintain ongoing health care. ACKNOWLEDGEMENTS This project was developed in recognition of all women who live with HIV infection and the providers who support them. Appreciation is extended to my family who tolerated my many hours at the computer, my friends and coworkers on Unit 68 at University Of Michigan Hospital who were always willing to listen to my ideas, and my scholarly project committee members Louise Selanders, Renee Canady, and Linda Keilman. iii TABLE OF CONTENTS STATEMENT OF THE ISSUE 1 REVIEW OF LITERATURE 3 Socioeconomic Status and Gender 4 Women in HIV Research and Clinical Trials 5 Neurological Manifestations of HIV 5 Integumentary Manifestations of HIV 6 Musculoskeletal Manifestations of HIV 7 Lympathic Manifestations of HIV 7 Oral Manifestations of HIV 8 Ophthalmological Manifestations of HIV 9 Endocrinological Manifestations of HIV 9 Renal Manifestations of HIV 9 Cardiovascular Manifestations of HIV 10 Pulmonary Manifestations of HIV 10 Gastrointestinal Manifestations of HIV 10 Gynecological Manifestations of HIV 11 Pregnancy and HIV 13 CONCEPTUAL FRAMEWORK 14 Individual Characteristics and Experiences 16 Behavior-Specific Cognitions and Affect 18 Behavioral Outcome 19 Limitations of Conceptual Framework 19 TOOL DEVELOPMENT 20 Psychological 21 Sociocultural 21 Values and Beliefs 22 Cognitive and Afi‘ective J2 Interpersonal Influences 42 Situational Influences 23 Behavioral Outcomes 23 iv Limitations of Tool 24 Assessment Tool 25 CONCLUSION 28 HIV Primary Care 28 Advanced Practice Nurses' Roles in HIV Care 28 Further Research 30 REFERENCES 31 LIST OF FIGURES Figure l-Pender's Revised Health Promotion Model Figure 2-Advanced Practice Nurses Assisting HIV infected Women to Maintain Primary Health Care Using RHPM vi 15 17 STATEMENT OF THE ISSUE Infection with human immunodeficiency virus (HIV), the causal agent of acquired immune deficiency syndrome (AIDS), poses a growing threat to women's health. In mid- 1996, the World Health Organization estimated that globally 42% of the 21 million adults living with HIV infection were women (Burdge & Money, 1996). By the year 2000, it is estimated that 13 million women worldwide will have been infected by HIV (Newman & Wofsy, 1997). The overall impact of HIV infection on women's health cannot be over- stated. The Centers for Disease Control and Prevention (CDC) report that in 1994, HIV infection was the third leading cause of death in the United States for women aged 25 to 44 years, after cancer and unintentional injury (CDC, 1996). Since 1985, the proportional yearly increase in death rate attributed to I-HV infection in women has surpassed that of men (Hirschhorn, 1995). There are three modes of HIV transmission: parenteral, sexual, and perinatal. The risk factors and demographics of the epidemic differ in women and men. As reported by Hirschhorn (1995), homosexual or bisexual activity were the most common routes of transmission for men and for AIDS cases overall in the United States. Recently, however, the greatest proportional rise in cases has been in individuals who report heterosexual transmission as their risk factor (Hirschhorn, 1995). Male-to-female transmission appears to be 2 to 4 times more efficient than female-to—male transmission (Hirschhorn, 1995). The anatomy and physiology of the female lower genital tract contributes to women's risk of infection (Gaskins, 1997). In the United States in 1994, heterosexual contact accounted for 38% of the total cases of HIV infection in women (Center for Disease Control, 1995). With injection drug use accounting for 41% of AIDS in the United States in 1994, it remains an important risk factor for HIV infection in women (Center for Disease Control, 1995). 2 The United States AIDS epidemic has had a disproportionate impact on women representing racial and ethnic minority groups. Although African American and Hispanic- American women in 1991 constituted only 17% of all US. women, they represented 73% of the women with AIDS (Williams, 1992). In 1994, HIV infection was the leading cause of death for black women aged 25 to 44 and the fifth leading cause of death for white women (Burdge & Money, 1996). The death rate is 9 times greater for African American women than Caucasian women and surpasses the death rate for Caucasian men (Gaskins, 1997) More women with AIDS are from communities that traditionally are medically under-served and have higher rates of poverty (Hirschhorn, 1995). Most HIV positive women live in poverty, are from communities of color, and are single heads of households who have young dependent children (Sowell, Seals, Moneyham, Guillory, Demi, & Cohen, 1996). Since women are often care providers for their family, they may delay addressing their own health care needs. To a greater degree than in men, the effect of HIV disease in women affects whole families. In the United States alone, the Centers for Disease Control projects that by the year 2000, the number of children and adolescents orphaned by HIV will exceed 82,000 (Driscoll, Cohen, Kelly, Taylor, Williamson, & Nicks, 1994). Case studies have shown that females report into the medical care system at more advanced stages of the disease than males and females receive substantially fewer services than males (Mohr, 1994). The growing rate of HIV infection among women means that primary care pro- viders can expect to see increasing numbers of women with symptomatic disease in the next decade. Numerous psychosocial and economic obstacles may prevent women fi'om seeking primary care. As primary care providers and community educators, Advanced Practice Nurses (APNs) have the potential to ensure continued care for HIV-infected women. APNs are frequently the sole providers of primary care to medically underserved 3 populations and will almost certainly be called upon to care for women with HIV (Williams, 1992). The purpose of this scholarly project is to provide APNs in primary care an assessment tool to utilize in the care of HIV infected women. The information derived from this assessment will lead to the development of nursing diagnoses that support the goal of maintaining health care for HIV infected women. This assessment was produced with the Revised Health Promotion Model (RHPM) as a guide. Identifying, planning, and evaluating the patient with a holistic approach can aid in meeting each individual woman's needs. The areas of assessment of each woman includes biological, psychological, socio- cultural, spiritual, cognitive, and affective aspects as well as interpersonal influences, situational influences, and behavioral outcomes. Analysis of available data reflects that poorer outcomes of HIV infected women could be attributed to the fact that women often had less access to and utilization of health care for HIV infection (Larkin, Ison, Toney, & Brokamp, 1996). Another prospective research study found that HIV infected women had a poorer survival rate than men, even though rates of disease progression did not differ by gender (Melnick, Sherer, Louis, Hillrnan, Rodriguez, Lackman, Capps, Brown, Carlyn, Korviclr, & Deyton, 1994). This study determined that some of these HIV deaths may have resulted fi'om difi‘erential access to or utilization of health care resources, lower socioeconomic status, homelessness, domestic violence, substance abuse, or lack of social support (Melnick et al., 1994). REVIEW OF LITERATURE Thousands of articles are currently available regarding HIV and AIDS. Due to overwhelming amount of information, many summary articles are used in the review of literature. It is acknowledged that many publications cited are not from the original work. W In the United States health data is generally reported only by race, sex, and age not by class or income (Krieger & Fee, 1994). It is therefore almost impossible to trace yearly changes in health status by social class in the population. Bringing social class into national health data bases could improve health data, increase our understanding of the social determinants of health, and provide a better basis for making health policy. In 1994, the U. S. Public Health Service and the National Institutes of Health participated in a conference that developed a goal of including women and minorities in research while taking into account the socioeconomic composition of study populations (Krieger & Moss, 1996). Krieger and Fee (1994) report that there are specialized surveys which give a glimpse of what is happening to the health of different social classes. These surveys show that the poorest people have the worst health and that mortality rates rise as incomes fall, increase as educational level decreases, and are higher among the unemployed than the employed (Krieger & Fee, 1994). Higher rates of HIV prevalence and AIDS incidence are found in areas with lower socioeconomic status (Gaskins, 1997). Socioeconomic characteristics of women have implications for health status. The low socioeconomic status of large portions of women of color suggests that they may suffer disproportionately from chronic illnesses and disabilities (Lavizzo-Mourey & Grisso, 1994). Eighty one percent of Afiican American women who acquire HIV heterosexually report an income of less than $10,000 annually, compared to 40% of Caucasian women (Gaskins, 1997). Complex economic and social factors along with the ongoing reality of gender power imbalance contribute to women's vulnerability to HIV infection while also contributing to decreased ability to access care (Burdge & Money, 1996). AIDS patients in the lowest socioeconomic or least access to health care group have significantly shorter survival times (Curtis & Patrick, 1993). ll! 'HDCE l “2].. 11.] Most of the current knowledge about HIV disease and AIDS is based on cohort studies and clinical trials that have predominately involved men (Hirschhorn, 1995). Clinical trials have strict entry criteria that tend to select subjects with adequate access to health care and relatively high socioeconomic status. Such trials have been criticized for underrepresenting Afiican Americans (Curtis & Patrick, 1993). Gender difi‘erences are difficult to document because of women being excluded from studies or included in small cohorts (Gaskins, 1997). In June 1996 there were 76,654 women with AIDS (Gaskins, 1997). The alarming increase in HIV infections in women has prompted many researchers to focus their studies on HIV infections in women (Larkin, Ison, Toney, & Brokamp, 1996) Women often have more advanced HIV disease at time of diagnosis compared with men and tend to suffer a more rapid progression of disease (Burdge & Money, 1996). Women die of AIDS faster than do men regardless of the initial diagnosis (Hanley & Lincoln, 1992). On the other hand, Gaskins (1997) stated that gender has not been found to affect prognosis or progression of HIV disease. Research has revealed that the poorer outcomes of HIV infected women are likely due to poor access to appropriate health care for HIV infection (Larkin, Ison, Toney, & Brokamp, 1996). ll 1 .1“ 'fi . [HIM Many HIV associated opportunistic infections and malignancies afi‘ect the nervous system. Reports estimate that 40% to 80% of HIV infected individuals eventually manifest neurologic or psychiatric symptoms (Hernandez, 1990). No literature was found that discussed gender differences of neurologic findings in HIV infection. A complete and well documented baseline neurologic and mental status examination is critical. The invest- igation should include focal motor or sensory defects, spasticity, abnormal cognitive behavior, incoordination, and loss of memory or concentration (Jewell & Sweet, 1992). It 6 is important to distinguish between evidence of depression, difficulty with situation adjust- ment, and evidence of dementia (DeHovit & Sadovsky, 1992). I l l 'E . EIIIIC Up to 90% of HIV infected persons have cutaneous abnormalities (Berger, 1997). Some of the skin conditions are common ones seen in the general population but are of increased severity. The types of skin diseases seen in the course of HIV relates to the deficiencies of a patient's immune system. HIV infected individuals often have several simultaneous or sequential cutaneous conditions (Berger, 1997). Skin disorders seen in HIV disease are classified as either infectious disorders (caused by bacterial, viral, fungal, or protozoa] pathogens), hypersensitivity disorders and drug reactions, or neoplasms (Berger, 1997). Frequently, early onset skin conditions include seborrheic dermatitis, folliculitis, herpes zoster, fiingal infections, vascular lesions, and molluscum contagiosum (DeHovitz & Sadovsky, 1992). Candidiasis, which is common in HIV positive women, can be found in intertriginous areas as well as orally and vaginally (Blanchet, 1995). F olliculitis is being seen with increased frequency in the HIV population and is thought to have a firngal origin. It consists of erythematous papules that are highly pruritic and commonly found above the waist (Blanchet, 1995). Psoriasis has been reported in HIV infected persons of both sexes with an incidence rate of 5% higher than in the general population (Berger, 1997). Seborrheic dermatitis signals immune system decline and is more frequently seen in men than women (Blanchet, 1995). In men, affected areas include the nasolabial fold and the mantel area of the chin while women are affected between the breasts, in the groin area, and in the axillary area (Blanchet, 1995). It may appear as dandruff of the scalp or flaking in the external ear in both men and women. Kaposi's Sarcoma is unique to HIV infection, but is much more common in homo- sexual men than women (Hirschhorn, 1995). Karposi's Sarcoma is found in less than two 7 percent of HIV infected women as an initial AIDS diagnosis (Newman & Wofsy, 1997). Women with HIV suffer more frequently from nail changes and nail fungal infections (Blanchet, 1995). In HIV infection, there can be hypertrophy, discoloration, and de- formity of the nails, often accompanied by thinning and breakage (Berger, 1997). Documentation of a firll body inspection is necessary. The entire integument system should be examined including areas hidden by underclothes, mucous membranes, soles of the feet, and hairy areas including the scalp and pubic region (Blanchet, 1995). Description should include the local arrangement of each type of lesion including their distribution, size, color, consistency, configuration, margination, and surface characteristics (Blanchet, 1995). Full descriptions of findings are needed for proper diagnosis and monitoring. II 111 III ‘E . EHIII Minimal literature was found on musculoskeletal abnormalities experienced by men and women with HIV. Muscle bulk and strength may be afl‘ected by neuropathic pro- cesses and by poorly understood wasting syndromes. HIV wasting syndrome has been documented more frequently in women than men (Hirschhorn, 1995). Hernandez (1990) reports the possibility of arthritic syndromes, sexually transmitted disease musculoskeletal problems (gonococcal arthritis, chlamydia associated Reiter's syndrome), intravenous drug use related infections (abscesses, osteomyelitis, septic joints), and other infectious diseases (tuberculous arthritis) in HIV infected persons. I l . I I '1] . EHIIC Persistent generalized lymphadenopathy (PGL) is defined as palpable lymph- adenopathy at two or more extrainguinal sites persisting for more than three months in the absence of other conditions that could explain the findings (Abrams, 1990). PGL is a common initial clinical manifestation of HIV infection in women (Hirschhorn, 1995). Patients with PGL may be asymptomatic. Lymphadenopathy is present in most HIV 8 positive persons, but usually the nodes are small and soft. The discovery of larger nodes, or crops of nodes, warrants further investigation (Johnson, 1994). Palpable nodes can indicate opportunistic infection or malignancy. Lymphadenopathy is less likely to occur in late stages of HIV disease (Abrams, 1990). C l I l 'E . EHDC Oral lesions have been recognized as prominent features of HIV infection in all populations (Greenspan & Greenspan, 1997). Oropharyngeal lesions may be ulcers, vesicles, plaques, macules, exudates, nodules, or diffusely inflamed tissue (Hernandez, 1990). Common oral manifestations in immunocompromised patients include candidiasis, hairy leukoplakia, ulcers due to herpes simplex virus, oral warts due to papillomavirus, and periodontal disease (El-Sadr et al., 1994). Unusual forms of gingivitis and periodontal disease are seen in association with HIV infections (Greenspan & Greenspan, 1997). There may be rapid progressive loss of gingival and periodontal soft tissues and rapid destruction of supporting bone. Some medications used to treat HIV infection can cause oral manifestations and should be considered if an alteration in oral mucosa is found. Esophageal candidiasis is more common in women than men (Burdge & Money, 1996). Hairy leukoplakia is caused by the Epstein-Barr virus and has been found more often in seropositive homosexual men than women (Azizi & Epstein, 1992). Recurrent oral herpes simplex infections are common in immunocompromised women and they tend to be slow to heal (Greenspan, 1990). Oral warts are associated with human papillomavirus (Greenspan & Greenspan, 1997). No data on the incidence of oral warts in women verses men was found in the literature. Less common oral lesions include non-Hodgkins lymphoma, Mycobacterium avium-intracellular complex, bacillary angiomatosis, and salivary gland enlargement, as well as ulcers due to varicella-zoster virus, cytomegalovirus, syphilis, histoplasma, and cryptococcus (El-Sadr et a1, 1994). Cllll'lll'fi' EHIIC Among people with AIDS, 40 to 75% experience ophthalmologic complications (Brody, 1996). Approximately 10% of the serious systemic complications of HIV infection first manifest in the eye (Brody, 1996). Gender specific information regarding ophthalmologic manifestations of HIV was not found in the literature. The well recognized signs of ocular involvement in AIDS include microvascular abnormalities, infections, neoplasms, and neuro-ophthalmic disorders (Brody, 1996). The most common eye problems include retinal cotton wool spots, Kaposi's sarcoma, and cytomegalovius retinitis (O'Donnell, 1990). Cytomegalovirus retinitis is the most serious ocular complication of AIDS, occurring in ten to fifteen percent of all patients (O'Donnell, 1990). External ocular manifestations of the lids, conjunctiva, and cornea are also possible (Brody, 1996). A number of endocrinologic abnormalities have been reported in patients with HIV infection, but their clinical importance remains largely uncertain (Hellerstein, 1990). Many are responses to infection, stress, malignancies, malnutrition, or as a complication of drugs used in the treatment of these disorders (Schambelan, Sellmeyer, & Grunfeld, 1997). In women with advanced AIDS, ovarian failure, manifested clinically by arnenorrhea, is commonly noted (Schambelan, Sellmeyer, & Grunfeld, 1997). Rmaleifeatatinnsnfl-IIM HIV associated nephropathy seems to be more common among intravenous drug users and lower in gay or bisexual men (Schoenfeld & Humphreys, 1990). Specific data was not found regarding women and renal complications of HIV infection. Early manifestations of HIV in the kidneys are rare. In later disease, glomerular disease and fluid and electrolyte abnormalities may occur (DeHovitz & Sadovsky, 1992). 1 0 Myocardial involvement with AIDS is unusual (Cheitlin, 1997). Drugs used in the treatment of AIDS may at times result in cardiac abnormalities (Cheitlin, 1990). Clinical cardiovascular disease is more commonly seen in intravenous drug abusers (Cheitlin, 1997). No gender specific information was found regarding HIV infected individuals with cardiovascular disorders. MmenamManifeslatimmflHIX More than fifty percent of patients with AIDS will develop one or more pulmonary diseases at some time during their illness (Miller & Walker, 1996). Pneumocystis carinii pneumonia is the most common AIDS defining condition regardless of gender, race, or mode of transmission (Fleming, Ciesielski, Byers, Castro, & Berkelrnan, 1993). In the early stages of HIV disease, bacterial infections such as community acquired pneumonia, sinusitis, and bronchitis infections predominate (Larkin, Ison, Toney, & Brokamp, 1996). Women are reported to be at an increased risk for bacterial pneumonia (Melnick, Sherer, Lois, Hillman, Rodriguez, Lackman, Capps, Brown, Carlyn, Korvick, & Deyton, 1994). AIDS patients are predisposed to a variety of fimgal, mycobacterial, bacterial, and viral opportunistic infections. Both Kaposi's sarcoma, lymphoma, and idiopathic inflammatory pulmonary disease are clearly associated with HIV disease (Small & Hopewell, 1990). Friedman (1990) suggests that 50 to 90% of all AIDS patients will have marked gastrointestinal symptoms during the course of their illness. Weight loss, dysphagia, anorexia, and diarrhea are almost universally found at some point in the course of the disease among patients with AIDS (Cello, 1997). Diarrhea is usually chronic and asso- ciated with weight loss and malnutrition (Friedman, 1990). Dysphagia may be evidence of esophageal candidiasis or viral ulcerations (DeHovitz & Sadovsky, 1992). Abdominal 11 pain and jaundice are less frequently seen and gastrointestinal bleeding is rare (Friedman, 1990). Hepatitis, hepatic lesions or abscesses, cholecystitis, appendicitis, enteritis, and colitis have all been described in HIV infection (DeHovitz & Sadovsky, 1992). Minimal gender specific gastrointestinal information was uncovered in the literature. Two points were consistent; candida esophagitis is more commonly found in women than men (Larkin, Ison, Toney, & Brokamp, 1996) and anorectal disease occurs more frequently in homosexual men than in women (Hernandez, 1990). 3 l . III ‘E . [HIM Gynecological symptoms develop in more than 70% of HIV infected women and these can be the presenting clinical manifestation (Burdge & Money, 1996). Although the kinds of infections seen are also common in HIV uninfected women, HIV positive women frequently have recurrent infections that tend to be more severe and are more refractory to treatment (Newman & Wofsy, 1997). Larkin, Ison, Toney, & Brokamp (1996) list the most common gynecological presentations as vaginal candidasis, pelvic inflammatory disease (PID), herpes simplex virus (HSV), human papillomavirus (HPV), cervical dysplasia, and invasive cervical carcinoma. Newmann and Nishimoto (1996) add menstrual irregularities, vaginitis, and sexually transmitted diseases (STDs) to the list. Rectal lesions and carcinomas are more common among HIV infected homosexual men than women (Hernandez, 1990). Prun'tus ani, which is caused by a combination of a yeast infection and a secondary bacterial infection triggered by inflammation, is common in both men and women (Blanchet, 1995). Recurrent vaginal candidiasis is the most common gynecological infection in HIV infected women and tends to be the first HIV associated opportunistic infection (Larkin, Ison, Toney, & Brokamp, 1996). Candidiasis has a more severe course and is less likely to respond to treatment regimes in HIV women (Hanley & Lincoln, 1992). Candida vaginitis heralds a change in overall health and occurrence of other HIV related conditions (Baker, 1995). 12 PID may be an indication of high risk sexual activity or the result of HIV immuno- suppression (Williams, 1992). PID has a more aggressive course in HIV positive women with a higher prevalence of unusual organisms which makes it more dificult to treat (Hanley & Lincoln, 1992). In women with HIV and PID, abdominal pain may be less prominent (Larkin, Ison, Toney, & Brokamp, 1996). HIV infected women are less likely to have leukocytosis and more likely to have abscesses that require surgical intervention than HIV negative women (DeHovitz & Sadovsky, 1992). An increased risk of PID in HIV positive women has not been demonstrated, but such a risk is theoretically plausible based on the increased rates of bacterial infections seen in asymptomatic, HIV positive individuals (W illiams,1992). Many clinicians believe that STDs and HIV may be cofactors (Newmann & Nishimoto, 1996). STDs that are nonulcerative have a three to fivefold increase in transmission for women who are HIV positive and there is a higher incidence of neuro- syphilis (Newmann & Nishimoto, 1996). In the United States, syphilis rates are many times higher for Afiican American women than for other U. S. populations (Williams, 1992). Case reports of active syphilis in HIV positive patients suggest that syphilis may present in unusual ways including rapid progression, increased severity, and relapse in spite of adequate treatment (Williams, 1992). Recurrent HSV is a common problem among HIV positive women. Serologic studies have estimated that up to 77% of HIV positive patients harbor HSV infection (Larkin, Ison, Toney, & Brokamp, 1996). HSV typically presents as painful vesicles on the genitalia while dissemination is rare (DeHovitz & Sadovsky, 1992). As immune dysfunction progresses, patients often experience more prolonged and severe outbreaks (Larkin, Ison, Toney, & Brokamp, 1996). HPV has been seen in two-thirds of symptomatic HIV positive patients and one- third of asymptomatic HIV positive women (Colletta, 1997). AIDS related immuno- 13 suppression increases the prevalence and severity of HPV, resulting in an increased risk of genital neoplasm (Colletta, 1997). Genital warts in HIV infected patients may be much more extensive and aggressive than is typical in nonirnmunocompromised patients (Baker, 1995). After treatment, 100% of HIV positive women had persistent or recurrent disease, compared with 58% of HIV uninfected women (Colletta, 1997). In HIV infected women, HPV is more often associated with cervical dysplasia which has a more rapid progression and poorer response to treatment than seen in HIV negative women (Williams, 1992). The occurrence of cervical dysplasia and neoplasia is stronger in women with advanced rather than early disease (Baker, 1995). Invasive cervical carcinoma in the HIV infected female is characterized by high-grade tumors, lymph node involvement, and often, metastatic spread at the time of diagnosis (Larkin, Ison, Toney, & Brokamp, 1996). Sporadic reports suggest that menstrual disorders are seen with greater frequency in HIV positive women (Newman & Wofsy, 1997). Manifestations may include increased bleeding or decreased menses (N ewmann & Nishimoto, 1996). Premature menopause has also been reported (Burdge & Money, 1996). Currently, there is no data to suggest that diagnosis or treatment of menstrual disorders should be different from that for HIV negative women (Newman & Wofsy, 1997). Btegnaanfection The possibility of a women who is HIV positive becoming pregnant is very real. Gaskins (1997) reports that 84% of women with HIV in the United States are of child- bearing age (15-44). Current research suggests that pregnancy itselfhas little influence on the natural history of HIV infection in women unless the woman is at a very advanced stage of disease (Burdge & Money, 1996). It has been reported that the effect of preg- nancy on the progression of HIV disease is minor and an acceleration of HIV disease status is uncommon (Williams, 1992). However, current research findings regarding HIV positive pregnant women are based on limited studies of asymptomatic women observed 1 4 for relatively short periods (Baker, 1995). At present, there is no clear consensus, nor are there overwhelmingly convincing data, to conclude that HIV disease progression is accelerated during or following pregnancy regardless of CD4 counts or clinical status of HIV disease (Landers & Shannon, 1997). Changes in the immune system during normal pregnancy are similar to some of the changes seen in HIV infection (Hanley & Lincoln, 1992). During pregnancy, the rate of decline in CD4 cell counts was more rapid in HIV positive women compared with HIV negative women (Baker, 1995). In some studies, it has been found that the CD4 counts of HIV infected women did not recover postpartum (Landers & Shannon, 1997). Low CD4 counts have been shown to predict the development of serious infection in both pregnant and nonpregnant women (Baker, 1995). Opportunistic infections in pregnant women are primarily related to the stage of HIV disease and the degree of immunosuppression (Williams, 1992). Research regarding women and HIV is still developing. Studies need to continue in order to understand how the HIV virus affects women. It is important to distinguish in the findings if differences found have a biological, social, or economic basis. CONCEPTUAL FRAMEWORK The revised Health Promotion Model (RHPM) serves as a framework for integrating nursing and behavioral science. It acts as a guide for providing care that meets patients' individual needs and characteristics in regards to the promotion of their personal health (Pender, 1996). The RHPM is an approach-oriented model and has potential applicability across the life span. The RHPM attempts to depict the multidimensional nature of persons interacting with their environment as they pursue health (Pender, 1996). APNs use the RHPM within a nursing perspective of holistic human functioning and emphasize the active role of the client in modifying health behaviors (figure 1). The RHPM can be used to guide APNs enhancement of HIV infected women's lndivldual Characteristics and Expeflences Prior Related Behaviors -previous illnesses -experiences with health care providers -prior coping abilities Personal Factors -physical limitations -home environment -educafion -financial status -spirituality ._ -fear of rejection by 15 Behavior-Speclflc Cognitions and Affect Perceived Benefits of Action -hea|thier lifestyle -longer life -feelings of control Perceived Barriers -stereotypes -money -time health care provider T Perceived Self-Efficacy -performance attainment __ -encouragement -self-esteem i Activity-Related Affect -subjected feelings F -family and peers -community -transportation ~attitude ~self perception Interpersonal Influences -health care providers Behavioral Outcomes Immediate Competing Demands (low control) and preferences (high control) W! -dependency on others -powerlessness Idiobiomml: -self-esteem -se|f-efficacy Health Commitment to a Promoting Plan of Action Behavior i -identify '°”9°i"9 ”same health care strategies —‘ -individualized health goals A -support systems -norms Situational Influences Figure 1 Revised Health Promotion Model (Pender, 1996) 16 health. This model was chosen because it allows for consideration of each woman's individuality. It provides the opportunity to assess influences that impact behaviors and outcomes. It is possible for the APN to impact the woman's commitment to action and healthy behaviors. APNs can assess HIV positive women's backgrounds and then influence their behaviors. The promotion of healthy behaviors should fit within each woman's needs and goals. The APN may use this model as a method of encouraging clients' self-care and promoting the continuation of primary health care services (figure 2). The interrelationships of each of the RHPM variables in relation to the goal of continued health care of HIV infected women will follow. I I. . I 1 Cl . . I E . Comprehensive and continued primary health care for HIV infected women will depend on each woman's unique personal characteristics and experiences. Prior related behaviors included in the RHPM have both a direct and indirect efl‘ect on the likelihood of engaging in health promoting behaviors. The direct effect of past behavior on current healthy behaviors may be due to habit formation where the client engages in the behavior automatically with little attention to the specific details. The APN can help women to shape a positive behavioral history for the future by focusing on the benefits of continued primary health care which includes the early detection and treatment of HIV related illnesses. Personal factors in the RHPM include biological, psychological, and sociocultural aspects (Pender, 1996). The woman's age and physical characteristics have an impact on the health behaviors she chooses to participate in. Psychological factors include self- esteem, self-motivation, personal competence, perceived health status, and personal definition of health (Pender, 1996). The model in figure 2 takes into account these influences while adding in the woman's values and beliefs which include spirituality. Personal sociocultural factors include race, ethnicity, education, and socio-econornic status (Pender, 1996). Most HIV infected women live in poverty and are from Individual Characteristics and Experiences Pnor Related Behaviors \ Personal Factors Values/ ‘ . Beliefs l7 Behavior-Specific Cognitions and Affect flPsychological Influences Sociocultural * Influences Interpersonal _. Influences Situational Influences Figure 2 Perceived Benefits iAPNC Behavioral Outcome Commitment to Health Care Perceived Barriers Y Goal: Continued Primary Care for HIV Women Advanced Practice Nurses Assisting HIV Infected Women to Maintain Primary Health Care Using Revised Health Promotion Model by Pender (1996) 18 communities of color (Sowell et al, 1996). APNs are frequently providers of primary care to underserved populations and need to be available to care for women with HIV. The cognitions and affect are considered key to motivation in the RHPM. These variables are susceptible to modification through nursing actions. Perceived benefit of action include the mental representations of the positive or reinforcing consequences of a behavior. A woman with HIV should be informed of the importance of HIV primary health care goals. These include the maintenance of good health, prevention of disease, diagnosis and treatment of disease, support for patients with acute and chronic diseases, and support of caregivers (Mansfield & Snigh, 1993). Perceived barriers to action may be imagined or real. They consist of perceptions concerning the unavailability, inconvenience, expense, difficulty, or the time consuming nature of a particular action. APNs can diminish women's barriers to primary health care by discovering what the barriers are and by developing strategies to overcome these barriers. When the barriers are low, the probability of action is much higher. Perceived self-efficacy is a judgment of one's abilities to accomplish a certain level of performance (Pender, 1996). Perceptions of skill and competence in a particular domain motivate individuals to engage in those behaviors in which they excel. HIV infected women can learn to recognize when their signs and symptoms should lead them to seek health care. When informed, women are the experts of their own being and can make the best decisions regarding their health care. Activity-related affect is the resultant feeling state that is likely to afl‘ect whether an individual will maintain the behavior (Pender, 1996). Positive affect associated with behaviors are likely to be repeated. If a woman departs from a primary health care visit with an upbeat attitude, she is more likely to commit to a plan of ongoing care. Interpersonal influences are cognitions concerning the behaviors, beliefs, or atti- 1 9 tudes of others (Pender, 1996). Societal norms, social support, and modeling can influence a woman's health behaviors. Many HIV infected women are single heads of households who have young, dependent children (Sowell et al, 1996) and therefore need to be cared for within the context of their family. Interpersonal influences efi'ect health promoting behavior and should be assessed for each woman. Situational influences can facilitate or impede behavior. These influences include perceptions of options available, demand characteristics, and aesthetic features of the environment in which a given behavior is proposed to take place (Pender, 1996). Primary health care services need to be in an environment that is safe, friendly, and convenient for women. Behavioralflutcome Success of a plan of action includes a commitment to carry out specific actions irrespective of competing preferences and identification of strategies for performing and reinforcing the behavior (Pender, 1996). Plans should be well developed and include strategies for assessing and performing the task as well as strategies for reinforcing the behavior. Strategies should be selected with each individual woman's preferences in mind. Health promoting behavior is the action outcome of the RHPM. The goal of the primary health care of HIV infected women is directed towards attaining each woman's individualized positive health outcome throughout her life span while maintaining continued access to health care. I . . . E C I E I The RHPM serves as a method of organizing the assessment of HIV infected women to impact their continuation of primary health care. The complexity of the model itself makes it difficult to apply. It requires the APN to understand health promotion within the aspects of the RHPM to gain the most benefit from the model. It also requires the woman to be an active decisions maker regarding her care. 20 TOOL DEVELOPMENT Assessment is an essential part of the nursing process. An APN, in a primary care setting, can use this tool to gather information to assist in developing an individualized plan of care. This tool, located at the end of this section, takes a look at multiple aspects of the HIV positive woman. It serves to identify opportunities for growth. Psychological, sociocultural, values and beliefs, and cognitive aspects as well as interpersonal influences, situational influences, and behavioral outcomes are all parts of the assessment. A similar assessment tool of women with HIV was not found in a review of the literature. This assessment tool takes an in-depth look at the woman with HIV in the hopes of understanding her motivations and barriers to health care. The data derived from the tool can provide the opportunity for the APN and woman to work together to attain mutually decided goals and also meet the goal of continued access to health care. As more becomes known about the virus, the recommendations for diagnostic studies and therapies that will keep HIV infected patients healthy for as longer periods. What will not change is the necessity for a skilled, careful history and physical examination and the necessity for attention to the patient's medical, psychologic, and social needs (Lynn,1992). An initial thorough history and physical examination should be performed because virtually every organ system may be affected during the course of HIV disease (Kocurek, 1996). This tool is piece of the HIV positive woman's holistic assessment along with a filll health history and physical exam. Some of the information needed to complete the tool may be elicited during the performance of the history and physical exam. The assessment tool is divided into sections to case it's use. The beginning of the form collects patient demographics. Date of diagnosis refers to the date their HIV status was determined. Included is a space to list their advanced directive. If they have not named a spokesperson to decide their care if they are unable to decide themselves, this serves as an opportunity for education about their own advanced directive. This issue is 21 more easily handled while the patient is clinically stable and not during a crisis (Kocurek, 1996) Spaces for alphabetic letters corresponding to identified nursing diagnoses (N SG DX) are listed along the left side of the tool. On the last page of the form, it is possible to prioritize the diagnoses formulated. In primary care, it is usually impossible to meet all of a patient's needs in one visit. Prioritization serves to organize the APN's activity to assist the client in meeting mutually determined goals. PsychologicaLAspecIs The woman's description of HIV serves as a starting point of education. Discover- ing what the woman already knows can make eficient use of appointment time. An issue of who is responsible for her health should be addressed. Ifthe woman believes that she is responsible for her own health, she may be a more active participant in her care. Discussion of a recent stressfirl event helps to assess her basic coping ability. Eliciting a few word description of how the woman perceives herself mentally as well as physically, gives the APN a framework for developing appropriate strategies to maintain health care. SncimzulmralAspects Any chronic and serious disease presents psychologic, social, and economic stresses to the patient, the patient's family, and other support systems (Lynn, 1992). The problems created by HIV disease are particularly complex because of the stigrnatization and isolation commonly felt by persons afi‘ected by the infection. Eliciting information regarding prior fiiends and family with HIV and her formal education level gives a basis for the woman's exposure and understanding of the illness. Assessing physical, biological, financial, and safety needs is important because if these basic needs are not met, the woman will most likely not be ready to put forth energy to maintain her health. Financial and health insurance issues tend to be considered before health care is instituted or maintained. Cultural influences should be addressed and 22 incorporated into her plan of care since they will influence her actions. It is important to identify early the patient's particular fears about HIV infection, the patient's coping strategies, and available supports (Lynn, 1992). Many communities have services available for persons with HIV and their families. Community resources used in the past determines the woman's familiarity with available services and can help determine firture needs. Xaluesanifleliefs Informal and organized religious beliefs influence the values and beliefs of individuals. Spirituality and its personal importance varies fi'om person to person. [fit is an integral piece of a woman, it should be part of the nursing care plan. A discussion of the woman's life goals can assist the APN in understangng the woman's desired outcomes. C . . I I m . I Discussing the woman's perceived benefits of maintaining health care initiates conversation regarding understanding of her own care. Ifthe motivational importance of anticipated benefits outweighs the barriers, the woman will engage in the behavior (Pender, 1996). In the RHPM, perceived benefits determine the extent of commitment to a plan of action. Bringing the woman's perceived barriers to maintaining health care out in the open gives the APN a chance to dissipate any misconceptions regarding health care. Percep- tions regarding inconvenience, expense, difficulty, or time issues related to health care can be discussed. The woman may not have put her feelings or attitudes regarding health care into words in the past. Discussion of her feelings can assist the APN to understand the woman better and lead to a more effective individualized plan of care. Interpersonaljnfluences The societal impact of HIV on women is enormous. The most immediate effects include the psychological stress on the woman who not only faces early disability and 23 probable premature death, but the fact that she will not be able to carry out the traditional role of caregiver until her children reach adulthood (Carpenter, Mayer, Stein, Leibman, Fisher, & Fiore, 1991). Concerns for significant others and children are often placed ahead of the caregiver's own health concerns. Having an understanding of the woman's home situation can shape strategies to assist her in maintaining health care. The social support system may be outside of those with whom the client lives. HIV is at times an emotional illness and the woman will need assistance from others during various stages of life. The client may not have shared her HIV status with others in fear of social stigrnatization. Offering the option of social support in the form of support groups may serve as a source of comfort. Uncovering current health care providers can assist in case management of her care. Knowing who is providing what services will help to organize resources. Situationallnfluences Discussion of situational influences includes basic ideas of how the clients can fit appointments within their current lifestyle. Perceptions of available Options, demand characteristics, and aesthetic features of the environment may be important issues. Basic assessment of transportation, work, and child care issues can assist the APN to arrange resources for the clients so they may attend appointments. If these basic issues are important to the client but ignored by the health care provider, the likelihood the client will return is low. BehaidotaLQutcomes Assessing coping demands and dependency on others may not be easily assessed with a simple question and may need to be addressed over time. Feelings of control and feelings about self may be important factors in the motivation to participate in health care. A brief description by the client of herself can give the APN insight into personality and the amount of confidence the client has. 24 The assessment also serves as a forum for patient education. Topics covered beyond the scope of the assessment may be added. Booklets or titles of other written information can be documented. Referrals made on the basis of the assessment can be documented in the space provided. An ongoing list of referrals and providers should be updated with each visit due to the mutidisciplinary approach to the disease. A multi- disciplinary model of family centered HIV care that provides health care, psychosocial support, case management services, and child care support has been shown to be effective (Larkin, Ison, Toney, & Brokamp, 1996). The expected outcome and mutual goals are based on the woman's needs and resources uncovered with the assessment tool. The APN has an overall goal of maintaining health care for the client who may also set her own individualized goals under the guidance of the APN. The length of the tool could be a barrier to use by APNs. It may be possible for the APN to complete the assessment over multiple visits or focus on topics that are relevant to current clinical situations. The assessment tool was not reviewed or tested by providers currently caring for HIV infected clients. For effective application of the tool, it should be tested and revised. Currently there is not a method of documenting on the assessment tool which nursing diagnoses have been resolved. It is possible that the diagnoses could be highlighted with a marker and dated with the resolution date. Some of the data gathered requires the elicitation of personal information that the client may not feel comfortable sharing with the APN. As the APN develops a rapport with a client, obtaining detailed data may become less difficult. Continued development of the tool based on clinical experts and research will add to it's usefirlness in primary care. E . 2 I [If] .I ELIE? Date of Review: Name: D.O.B. Date of dx: Advanced Directive: (spokesperson name/phone) NSG DX Knowledge of HIV: Person responsible for health: Prior coping mechanisms: Perception of self (describe self): lllll Perceived health status: H! l l llll Hill I magma Friends/family with HIV: Access to shelter: Neighborhood: Access to food: Cultural influences: Education: Current occupation/satisfaction: Work hours: Financial status/difficulties: Financial/care provider: Feelings of security: Health insurance: Sick time: Community resources used: 25 26 llll WW II Religion: Spirituality: Perceived benefits of health care: Life goals: : ..v HES“ J Peceived barriers to health care: Perceived ability to continue health care: Feelings/attitudes regarding health care: Number/ages/health of household members/children: Support systems: Family/friends: Current health care providers: lllll F S' . Mil . ll Convenience of appointments: Transportation/location of care: Childcare availability: Time off work: Comfort with facility: 27 Coping demands: Dependency on others: Sense of control: Self esteem (feelings about self): lllll Expectations of health care: "Priority(1-8) MW EQTWUOW?’ llllllll Client education provided: Referrals: Expected outcomes/mutual goals: Assessment by: 28 CONCLUSIONS HISLBIjmaQLCate Primary care includes services to which an individual has direct access. The main goals of primary care are the maintenance of good health, prevention of disease, diagnosis and treatment of disease, support for patients with acute and chronic diseases, and support of caregivers (Mansfield & Singh, 1993). Early presentation for primary medical care is crucial for HIV-infected patients in order for them to derive the maximum benefit fi'om health screening for opportunistic infections as well as educational and clinical inter- ventions. Adequate primary care is important for women who are infected with HIV to maximize their wellness at every stage of disease. Prophylactic therapy along with better medical management of opportunistic infections may increase length of survival among HIV-infected persons (Mohr, 1994). Patient outcomes could be improved with early recognition and treatment of opportunistic infections. Early entry into the health care system for HIV infected women aims to prevent or delay symptoms and disease (Santangelo & Schnack, 1991). II 113 '11 El °HIICE' C Primary care APNs have many critical roles in the provision of services to women with HIV disease. Caring for HIV-infected individuals is a complex task and is best handled with a multidisciplinary approach. APNs can collaboratively provide routine primary health care and health promotion services for HIV infected women. They can also serve as the coordinator of care provided by various specialists that may be involved in the patient's treatment. Since patients with HIV present with complex physical and psychosocial problems, a case management approach by APNs can help patients achieve and maintain a maximum level of fiinction within a holistic framework. The case manage- ment approach of assessment, planning, implementation, and evaluation, are especially 29 important for persons with HIV since their emotional and physical condition can change rapidly, altering the type and level of appropriate intervention (Sowell et al, 1995). It is possible for the APN to act as a consultant to provide advice or information to other members of the health care team. Support groups for HIV infected women can be initiated and maintained by APN leaders. APNs focus on educating patients about their disease, attending to psychological needs, and initiating patients' ability to perform self- directed problem solving to control symptoms and enhance fimction in everyday life (Aiken, Lake, Semaan, Lehman, O'Hare, Cole, Dunbar, & Frank, 1993). Education is instilled in APNs' activities. I-HV education to individuals, families, and communities is important. While treating women with HIV, APNs have the invaluable role of advocates for women in facilitating access to the most appropriate, comprehensive health care possible (Hanley & Lincoln, 1992). A healing and respectful relationship is developed so the woman is engaged in the decisions regarding her care (Kocurek, 1996). Goals of HIV primary care become joint decisions between provider and patient. APNs can act as advocates by ensuring that women are well informed about the disease and the resources available to them. APNs may fill the role of change agent by informing providers within the health care system, health care reimbursement entities, and research institutions the importance of improving health care access and increasing the involvement of HIV infected women in research. APNs may participate directly in research regarding HIV disease. Their invol- vement can further the care of women and advance nursing knowledge. There is a rapid transition of HIV research findings to clinical care which demonstrates the speed with which treatment changes for this disease. This emphasizes the need for clinicians to work closely with specialists to ensure the most recent research findings are used as the basis for care (Newmann & Nishimoto, 1996). 30 W With the changing epidemiology of AIDS, health care providers and policy makers must understand how HIV infection and AIDS may differ between women and men in order to provide optimal care and necessary services (Hirschhorn, 1995). Clinical management of HIV infected pregnant and nonpregnant women requires fiirther study about pathogenesis, infections, and malignancies. Increased enrollment of women in epidemiological and clinical trials are needed to ensure adequate statistical information regarding differences in HIV infected women (Newman & Wolfsy, 1997). Research should also include socioeconomic data along with data on sex, race and ethnicity, and age (Moss & Krieger, 1995). The benefits of APNs being team members in the care of HIV infected women needs to be studied and reported. Markers of positive patient outcomes need to be demonstrated and how APNs help improve patient outcomes helps to justify their role in the care of HIV infected women. Infection with HIV often results in a chronic disease state that requires continued health care. Improved general and targeted efforts are needed to link all HIV -infected individuals with primary medical care before the development of advanced disease. An HIV infected individual may live a decade or more before opportunistic infections arise. During this time, there are a series of medical, psychological, and social interventions that pro-viders, such as APNs, can implement which can improve patients' quality of life (El- Sadr et al, 1994). 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