William L. Holzemer

Disclosure of HIV Status: Experiences and Perceptions of Persons Living With HIV/AIDS and Nurses Involved in Their Care in Africa

Most people with HIV have disclosed their status to someone, often with mixed results. Most health literature seems to favor disclosure by persons living with acquired immunodeficiency syndrome (AIDS), but it could be that to disclose is not always a good thing. We used a descriptive, qualitative research design to explore the experience of human immunodeficiency virus (HIV) and AIDS stigma of people living with HIV or AIDS and nurses involved in their care in Africa. Focus group discussions were held with respondents. We asked them to relate incidents that they themselves observed, and those that they themselves experienced in the community and in families. Thirty-nine focus groups were conducted in five countries in both urban and rural settings. This article is limited to a discussion of data related to the theme of disclosure only. The sub-themes of disclosure were experiences before the disclosure, the process of disclosure, and responses during and after disclosure.

Validation of the HIV/AIDS Stigma Instrument—PLWA (HASI-P)

Abstract This article describes the development and testing of a quantitative measure of HIV/AIDS stigma as experienced by people living with HIV/AIDS. This instrument is designed to measure perceived stigma, create a baseline from which to measure changes in stigma over time, and track potential progress towards reducing stigma. It was developed in three phases from 2003–2006: generating items based on results of focus group discussions; pilot testing and reducing the original list of items; and validating the instrument. Data for all phases were collected from five African countries: Lesotho, Malawi, South Africa, Swaziland and Tanzania. The instrument was validated with a sample of 1,477 persons living with HIV/AIDS from all of the five countries. The sample had a mean age of 36.1 years and 74.1% was female. The participants reported they knew they were HIV positive for an average of 3.4 years and 46% of the sample was taking antiretroviral medications. A six factor solution with 33 items explained 60.72% of the variance. Scale alpha reliabilities were examined and items that did not contribute to scale reliability were dropped. The factors included: Verbal Abuse (8 items, alpha=0.886); Negative Self-Perception (5 items, alpha=0.906); Health Care Neglect (7 items, alpha=0.832); Social Isolation (5 items, alpha=0.890); Fear of Contagion (6 items, alpha=0.795); and Workplace Stigma (2 items, alpha=0.758). This article reports on the development and validation of a new measure of stigma, HIV/AIDS Stigma Instrument—PLWA (HASI-P) providing evidence that supports adequate content and construct validity, modest concurrent validity, and acceptable internal consistency reliability for each of the six subscales and total score. The sacle is available is several African languages.

Exploring HIV Stigma and Quality of Life for Persons Living With HIV Infection

&NA; The purpose of this study was to explore the potential contribution of perceived HIV stigma to quality of life for people living with HIV infection. A cross‐sectional design explored the contribution of demographic variables, symptoms, and stigma to quality of life in an international sample of 726 people living with HIV infection. Stigma independently contributed a significant 5.3% of the explained variance in quality of life, after removing contributions of HIV‐related symptoms and severity of illness. This study empirically documents that perceived HIV stigma had a significantly negative impact upon quality of life for a broad sample of people living with HIV infection.

Managing AIDS stigma

According to anecdotal reports, AIDS stigma and discrimination continue to influence people living with and affected by HIV disease as well as their health care providers, particularly in southern Africa where the burden of AIDS is so significant. Stigma is perceived as a major limiting factor in primary and secondary HIV/AIDS prevention and care. It reportedly interferes with voluntary testing and counselling, and with accessing care and treatments, thereby increasing suffering and shortening lives. Many health care workers in southern Africa have come to the conclusion that unless stigma is conquered, the illness will not be defeated. While there is substantial anecdotal evidence of the impact of stigma on AIDS care, very little rigorous research has been conducted. This article explores three questions: What is AIDS stigma? What is the impact of AIDS stigma? How can health care providers help to manage AIDS stigma?

Coping with HIV-related stigma in five African countries

People living with HIV (PLWH) and their families are subjected to prejudice, discrimination, and hostility related to the stigmatization of AIDS. This report examines how PLWH cope with HIV-related stigma in the five southern African countries of Lesotho, Malawi, South Africa, Swaziland, and Tanzania. A descriptive qualitative research design was used to explore the experience of HIV-related stigma of PLWH and nurses in 2004. A total of 43 focus groups were conducted with 251 participants (114 nurses, 111 PLWH, and 26 volunteers). In describing incidents of stigma, respondents reported strategies used or observed to cope with those incidents. Nurse reports of coping strategies that they used as well as observed in HIV-infected patients were coded. Coping strategies used by PLWH in dealing with HIV-related stigma were coded. A total of 17 different self-care strategies were identified: restructuring, seeing oneself as OK, letting go, turning to God, hoping, changing behavior, keeping oneself active, using humor, joining a support or social group, disclosing ones HIV status, speaking to others with same problem, getting counseling, helping others to cope with the illness, educating others, learning from others, acquiring knowledge and understanding about the disease, and getting help from others. Coping appears to be self-taught and only modestly helpful in managing perceived stigma.

HIV and AIDS Stigma Violates Human Rights in Five African Countries

The situation and human rights of people living with HIV and AIDS were explored through focus groups in five African countries (Lesotho, Malawi, South Africa, Swaziland and Tanzania). A descriptive qualitative research design was used. The 251 informants were people living with HIV and AIDS, and nurse managers and nurse clinicians from urban and rural settings. NVivo™ software was used to identify specific incidents related to human rights, which were compared with the Universal Declaration of Human Rights. The findings revealed that the human rights of people living with HIV and AIDS were violated in a variety of ways, including denial of access to adequate or no health care/services, and denial of home care, termination or refusal of employment, and denial of the right to earn an income, produce food or obtain loans. The informants living with HIV and AIDS were also abused verbally and physically. Country governments and health professionals need to address these issues to ensure the human rights of all people.

Testing a nurse-tailored HIV medication adherence intervention.

Background: The relationship between patient adherence and treatment outcomes has been documented across chronic health conditions, but the evidence base for effective adherence interventions in human immunodeficiency virus (HIV) and acquired immune deficiency syndrome (AIDS) requires more rigorous research and reporting. Objectives: The aims of this study were to determine whether a tailored, nurse-delivered adherence intervention program-Client Adherence Profiling and Intervention Tailoring (CAP-IT)-improved adherence to HIV medications, compared with standard care, and to identify the relationship among adherence measures. Methods: A randomized controlled trial (RCT) with repeated measures was used to test the efficacy of CAP-IT over a 6-month period. A convenience sample of 240 participants was recruited from a freestanding public HIV/AIDS clinic in Houston, TX, that provides medical, psychological, and pharmaceutical services for over 5,000 clients. Study instruments and measures included demographics; chart audit to capture CD4 count, viral load, and prescribed medications; health literacy; and five measures of adherence (AIDS Clinical Trial Group-Revised Reasons for Missing Medications, Morisky Self-Report of Medication Non-Adherence, Pill Count, Medication Event Monitoring System [MEMS] caps, and Pharmacy Refill). Results: A logistic regression using generalized estimating equations method showed no significant differences over time on the five medication-adherence measures between the experimental and control groups. Little correlation was documented among the five different adherence measures, and there was minimal correlation with clinical markers. Discussion: It is unclear why the tailored adherence intervention was not efficacious in improving medication adherence. The findings suggest that these measures of medication adherence did not perform as expected and that, perhaps, they are not adequate measures of adherence. Effective and efficient adherence interventions are needed to address the barriers to medication adherence in HIV/AIDS.

Reconciling Incompatibilities: A Grounded Theory of HIV Medication Adherence and Symptom Management:

The purpose of this grounded theory study was to explain how ethnically diverse men and women living with HIV manage their interacting illness symptoms, medication side effects, and treatment adherence choices. The authors used the constant comparative method to analyze textual data from in-depth interviews with 66 HIV-infected people representing the changing HIV demographic profile in the San Francisco Bay area and generate a theory of Reconciling Incompatibilities. Adherence options of complying, not complying, or self-tailoring occurred in a context of attributional uncertainty as to whether distress was illness-or treatment-related, a sometimes silent virus, and perceived fickle medical markers. Conditions, including self-identity, illness ideology, concurrent treatment regimens, the meaning of time, medication burden and side effects, and lifestyle, coalesced to produce a state of mind that shaped adherence choices on a dose-by-dose basis. This theory offers a basis for interventions designed to promote optimal adherence choices concerning HIV therapies.

Evaluation of a Health Setting-Based Stigma Intervention in Five African Countries

The study aim is to explore the results of an HIV stigma intervention in five African health care settings. A case study approach was used. The intervention consisted of bringing together a team of approximately 10 nurses and 10 people living with HIV or AIDS (PLHA) in each setting and facilitating a process in which they planned and implemented a stigma reduction intervention, involving both information giving and empowerment. Nurses (n = 134) completed a demographic questionnaire, the HIV/AIDS Stigma Instrument-Nurses (HASI-N), a self-efficacy scale, and a self-esteem scale, both before and after the intervention, and the team completed a similar set of instruments before and after the intervention, with the PLHA completing the HIV/AIDS Stigma Instrument for PLHA (HASI-P). The intervention as implemented in all five countries was inclusive, action-oriented, and well received. It led to understanding and mutual support between nurses and PLHA and created some momentum in all the settings for continued activity. PLHA involved in the intervention teams reported less stigma and increased self-esteem. Nurses in the intervention teams and those in the settings reported no reduction in stigma or increases in self- esteem and self-efficacy, but their HIV testing behavior increased significantly. This pilot study indicates that the stigma experience of PLHA can be decreased, but that the stigma experiences of nurses are less easy to change. Further evaluation research with control groups and larger samples and measuring change over longer periods of time is indicated.

Symptom management and self-care for peripheral neuropathy in HIV/AIDS.

Abstract 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, sociodemographic and disease-related correlates and self-care strategies. A convenience sample of 1,217 respondents was recruited from data collection sites in several US cities, Puerto Rico, Colombia and Taiwan. Results of the study indicated that respondents with peripheral neuropathy (n=450) identified 20 self-care behaviors including complementary therapies, use of medications, exercise and rest and/or elevation of extremities. Ratings of frequency and effectiveness were also included. An activities checklist summarized into five categories of self-care behaviors including activities/thoughts, exercise, medications, complementary therapies and substance was used to determine self-care behaviors. Taking a hot bath was the most frequent strategy used by those with peripheral neuropathy (n=292) and received the highest overall rating of effectiveness of any self-management strategies included in this study at 8.1 (scale 1–10). Other self-care strategies to manage this symptom included: staying off the feet (n=258), rubbing the feet with cream (n=177), elevating the feet (n=236), walking (n=262), prescribed anti-epileptic agent (n=80), prescribed analgesics (n=84), over-the-counter medications (n=123), vitamin B (n=122), calcium supplements (n=72), magnesium (n=48), massage (n=156), acupuncture (n=43), reflexology (n=23) and meditation (n=80). Several behaviors that are often deemed unhealthy were included among the strategies reported to alleviate peripheral neuropathy including use of marijuana (n=67), cigarette smoking (n=139), drinking alcohol (n=81) and street drugs (n=30).