Kathleen M. Nokes

Relationships Between Perception of Engagement with Health Care Provider and Demographic Characteristics, Health Status, and Adherence to Therapeutic Regimen in Persons with HIV/AIDS

The purpose of this descriptive, correlational study was to examine the relationships between perception of engagement with health care provider and demographic characteristics, health status, and adherence to therapeutic regimen in persons with HIV/AIDS. The convenience sample of 707 non-hospitalized persons receiving health care for HIV/AIDS was recruited from seven U.S. sites. All measures were self-report. Perception of engagement with health care provider was measured by the newly developed Engagement with Health Care Provider scale. Adherence to therapeutic regimen included adherence to medications, provider advice, and appointments. Health status was measured by the Medical Outcomes Study Short Form 36 (MOS SF-36), Living with HIV scale, CD4 count, and length of time known to be HIV-positive. There were no significant relationships between engagement with health care provider and age, gender, ethnicity, and type of health care provider. Subscales of the MOS SF-36 and Living with HIV explained a significant, but modest amount of the variance in engagement. Clients who were more engaged with their health care provider reported greater adherence to medication regimen and provider advice. Clients who missed at least one appointment in the last month or who reported current or past injection drug use were significantly less engaged.

Health-Related Quality of Life in Persons Younger and Older than 50 Who are Living with HIV/AIDS

Mortality rates are higher in older persons with AIDS. The Wilson and Cleary health-related quality-of-life model was used to explore whether there were differences on health-related quality-of-life variables between persons aged 50 or older (n = 73) and younger persons (n = 640) in a national sample. Depending on the level of the data, either independent t tests or chi-squares were calculated. Older participants reported significantly more medical conditions such as diabetes or hypertension (p = .000), more limitations in physical functioning (p = .006), and self-disclosure of HIV infection to fewer people (p = .000). There were no significant differences on any of the other variables. There are relatively few differences in older as compared to younger persons living with HIV/AIDS, yet mortality rates are higher in older samples. The relationship between the areas where there are differences and whether they affect morbidity and mortality need further exploration.

Correlates of sleep quality in persons with HIV disease.

This study used the Symptom Experience dimension of the revised UCSF Symptom Management Conceptual model to examine correlates of sleep quality in HIV-infected persons. According to this model, person, health/illness, and environment categories influence perception of a symptom. The average person in the sample (N = 58) reported being HIV-infected for 8.5 years and was 46 years old, not working, and a person of color. Depending on the level of data, either chi square or Pearson correlations were computed between the person, health/illness, and environment categories and the dependent variable, sleep quality, as measured by the Pittsburgh Sleep Quality Index. Person variables significantly related to sleep quality were employment status, trait anxiety, and general well-being. Health/illness variables significantly related to sleep quality were length of time living with HIV disease and five health status measures (depressive symptoms, state anxiety, symptom severity, daytime sleepiness, and functional status). The environmental variables associated with sleep quality were sleeping alone, having a separate bedroom, and sleeping in a noisy room. Correlates of better sleep quality are positive general well-being, less anxious personality trait and emotional state, less daytime sleepiness, less depressive symptoms, and less symptom severity. Correlates of worse sleep quality are impaired functional status and longer duration of living with HIV disease.

Self-care management of anxiety and fear in HIV disease.

The purpose of this study is to describe the frequency and correlates of self-reported anxiety and fear and the self-care behaviors used to manage these symptoms. Data were collected in a convenience sample (N = 422) of HIV-positive subjects. Demographic and disease-related variables were compared for those who did and did not report anxiety and fear. Anxiety and fear were the most frequently reported symptoms (17.3%, n = 73). There were significant differences on gender, level of education, and the use of antiretroviral medications. Self-care behaviors (n = 212) for anxiety and fear were grouped into seven categories: using activities for distraction = 25%, talking to others = 21%, using alternative/complementary therapies = 18%, taking prescribed medications = 10%, using self-talk = 9%, using substances = 9%, and using avoidance behaviors = 7%. Anxiety and fear are commonly experienced by people with HIV/AIDS. Self-care strategies are imperative in the management of these clinical manifestations.

Self-care management for neuropathy in HIV disease

Peripheral neuropathy is the most common neurological complication in HIV and is often associated with antiretroviral therapy. As part of a larger study on self-care for symptoms in HIV disease, this study analyzed the prevalence and characteristics of peripheral neuropathy in HIV disease, the self-care strategies, and sources of information for self-care utilized by the sample. A convenience sample of 422 respondents was recruited from an Internet web-based site developed by the University of California, San Francisco International HIV/AIDS Research Network and from five geographic data collection sites (Boston, New York City, San Francisco and Paterson in the USA, and Oslo, Norway). Results of the study indicated that respondents with peripheral neuropathy identified 77 self-care behaviours including complementary therapies, use of medications, exercise and rest and/or elevation of extremities. Sources of information included health care providers, informal networks and media sources.

Self-Care for Fatigue in Patients With HIV

PURPOSE/OBJECTIVES To identify when fatigue is reported as a problem by people who are HIV positive, what the perception of fatigue is, and which self-care behaviors are used and with what efficacy. DESIGN Multisite descriptive study. SETTING University-based AIDS clinics, community-based organizations, and homecare agencies located in cities across the United States, in Norway, and through a university Web site. SAMPLE Convenience sample of 422 self-identified people who are HIV positive. MAIN RESEARCH VARIABLES Symptom description, symptom relief, symptom help, and self-care strategies. FINDINGS The sixth most reported symptom in this study, fatigue, was treated with a variety of self-designed strategies. In only three instances was consultation with a healthcare provider (i.e., physician) or an injection (medication not defined) mentioned. The most frequently used interventions were supplements, vitamins, and nutrition followed by sleep and rest; exercise; adjusting activities, approaches, and thoughts; distraction; and complementary and alternative therapies. In addition to self-designed strategies, the media and friends and family were sources of information. CONCLUSIONS Fatigue was reported less frequently in this study than in other HIV-, AIDS-, or cancer-related studies. This may be an artifact of the study design. The use of informal networks for assistance, let alone the prevalence of unrelieved fatigue, indicates the need for more attention to this problem among people with AIDS. IMPLICATIONS FOR NURSING Careful assessment of the pattern of fatigue and its onset, duration, intervention, and resolution is required if the varied types of fatigue are to be identified and treated successfully.

Using a Telephone Support Group for HIV-Positive Persons Aged 50+ to Increase Social Support and Health-Related Knowledge

Middle-aged and older persons living with HIV/AIDS have unique needs arising from the physical, mental, and social changes associated not only with normal aging but also related to living with a chronic illness. To address these needs, two 10-week telephone psychoeducational support groups were offered for HIV-infected persons aged 50 or older. Each group was cofacilitated by a registered nurse and a social worker; each session was 50-60 minutes every Friday; approximately 1-5 clients participated with an average number of 3 clients and there was no charge to the participants. The issues addressed in the group were: (1) staying healthy; (2) symptom management; (3) understanding other chronic illnesses; (4) understanding diagnostic tests; (5) strategies for effective interactions with the health care provider; (6) optimizing HIV/AIDS medication use; (7) understanding new developments in HIV treatment; (8) coping with losses; and (9) finding commonalities. There were unique challenges. Boundaries of respect were more difficult to maintain in a teleconference, as opposed to an in-person group. Nonverbal cues were impossible to interpret and therefore greater sensitivity was required to gauge the impact of borderline, less controlled group members, especially in relationship to other group members who may tend to be less assertive. One group member withdrew because his hearing was impaired and the telephone modality was just too challenging. It has been found that middle-aged and older adults living with HIV/AIDS with greater depression identify a need for information and support. It is crucial to share concrete information, identify symptoms clearly, and explore the use of effective and ineffective medications and treatments. The psychosocial concerns are very real and encouraging group members to open up to one another to create a cohesive community of sharing is equally important. Although the use of teleconference technology makes this more difficult, the attempt to create a situation that facilitates connections with another individual is one strategy to decrease geographic or logistical isolation.

Complementary Therapy Use in Persons with HIV/AIDS:

The purpose of this study was to describe the frequency and correlates of complementary and alternative medicine (CAM) therapies used by people with HIV/AIDS to manage illness and treatment-related symptoms. Data were collected from a convenience sample (N = 422) of people living with HIV disease. Demographic variables (e.g., education, age, and gender) were compared for those who reported using at least one CAM therapy. There were significant differences for gender (χ2 = 4.003, df =1,p = .045) and for ethnicity (χ2 = 6.042, df =2, p = .049). Females and African Americans used CAM more frequently. More than one third of the participants used CAM, and there were a total of 246 critical incidents of nontraditional treatment use. It is possible that these nonallopathic interventions may positively affect health-related quality of life in persons with HIV by ameliorating or reducing the side effects associated with the disease and its treatments.

Faculty perceptions of student documentation skills during the transition from paper-based to electronic health records systems.

Nursing faculty perceptions of teaching undergraduate nursing students documentation skills using either paper-based or electronic health record systems were explored in this study. Twenty-five nursing faculty in a large urban public school of nursing were interviewed using a 13-item survey questionnaire. Responses were analyzed using the constant comparative method, and four major themes arose: teaching strategies; learning from experts; road from novice to expert; and legal, ethical, and institutional issues. Results demonstrate how faculty overcome myriad obstacles encountered while teaching clinical documentation processes. Self-efficacy theory, with its emphasis on knowledge, skills, and social context, describes how faculty are modeling behaviors necessary to succeed during this transition from paper to electronic documentation. The school of nursing is integrating the findings from this research to further informatics integration across the curricula, and ongoing research is planned to investigate issues of self-efficacy and student and clinical staff perceptions of teaching-learning clinical documentation.

Predictors of Perception of Cognitive Functioning in HIV/AIDS

This is a descriptive, correlational study of the predictors of perceived cognitive functioning. The convenience sample of 728 nonhospitalized persons receiving health care for HIV/AIDS was recruited from seven sites in the United States. All measures were self-reported. Self-perception of cognitive functioning, the dependent variable, was composed of three items from the Medical Outcomes Study HIV scale: thinking, attention, and forgetfulness. Data related to age, gender, ethnicity, education, injection drug use, CD4 count, and length of time known to be HIV-positive were collected on a demographic questionnaire. The scale from the Sign and Symptom Checklist for Persons with HIV Disease was used to measure self-reported symptoms. Data were analyzed using hierarchical multiple regression analysis. Predictors of perception of cognitive functioning explained a total of 36.3% of the variance. Four blocks--person variables (1.5%) (age, gender, education, history of injection drug use), disease status (2.3%), symptom status (26.5%), and functional status (5.4%)--significantly contributed statistically to the total variance. Among those individuals who completed the questions related to depression (n = 450), 28% of the variance in cognitive functioning was explained by this variable. The findings in this multi-site study indicate that symptom status explained the largest amount of variance in perceived cognitive functioning. Early identification of cognitive impairment can result in appropriate clinical interventions in remediable conditions and in the improvement of quality of life.