Joanne R. Naidoo

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.

HIV stigma and missed medications in HIV-positive people in five African countries.

The availability of antiretroviral medications has transformed living with HIV infection into a manageable chronic illness, and high levels of adherence are necessary. Stigma has been identified as one reason for missing medication doses. The objective of this study was to explore the relationship between perceived HIV stigma and self-reported missed doses of antiretroviral medications in a 12-month, repeated measures cohort study conducted in Lesotho, Malawi, South Africa, Swaziland, and Tanzania. Data were collected from 1457 HIV-positive individuals at three times between January 2006 and March 2007. Participants completed a series of questionnaires. Of the 1457 participants, 698 were taking ARVs during the study and are included in this analysis. There was a significant relationship between perceived HIV stigma and self-report of missed medications over time (t = 6.04, p </= 0.001). Individuals who reported missing more ARV medications also reported higher levels of perceived HIV stigma. Individuals reporting fewer medication worries reported decreased stigma over the one year period (t = -4.79, p </= 0.001). While those who reported increased symptom intensity also reported increased stigma initially (t = 8.67, p </= 0.001) that remained high over time. This study provides evidence of a significant and stable correlation that documents the relationship between perceived HIV stigma and self-reported reasons for missed medications over time. These findings suggest that part of the reason for poor adherence to ARV medications is linked to the stigma experienced by people living with HIV.

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.

Perceived HIV stigma and life satisfaction among persons living with HIV infection in five African countries: A longitudinal study

BACKGROUND Descriptive literature exists on the effects of HIV-related stigma on the lives of people living with HIV infection but few empirical studies have measured perceived HIV stigma nor explored its potential relationship to quality of life (QoL) over time in people living with HIV infection. AIM A cohort study of a purposive convenient sample of 1457 HIV-positive persons was followed for one year in a longitudinal design that examined the effects of stigma and the life satisfaction dimension of the HIV/AIDS Targeted Quality of Life Instrument (HAT-QOL) over time, as well as the influence of other demographic and assessed social variables. Data were collected three times about six months apart from December 2005 to March 2007. RESULTS The average age in this sample was 36.8 years (SD=8.78, n=1454) and 72.7% (n=1056) were female. The initial sample of participants was balanced among the five countries: Lesotho, Malawi, South Africa, Swaziland, and Tanzania. An attrition analysis demonstrated few demographic differences between those who remained in the study 12 months later compared with those at baseline. However, those who completed the study and who answered the QoL questions had significantly higher life satisfaction scores at baseline than those who left the study. There was a general increase in the report of life satisfaction QoL in all countries over the one-year period. However, as stigma scores increased over time there was a significant decrease in life satisfaction with differing rates of change by country. Certain factors had a positive influence on life satisfaction QoL: positive HIV media reports, taking antiretrovirals, reduced symptom intensity, and disclosure to a friend. CONCLUSION This cohort study is the first to document empirically in a longitudinal sample, that perceived HIV stigma has a significantly negative and constant impact upon life satisfaction QoL for people with HIV infection. In the absence of any intervention to address and reduce stigmatization, individuals will continue to report poorer life satisfaction evidenced by reduced living enjoyment, loss of control in life, decreased social interactivity, and decreased perceived health status.

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.

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.

The development and validation of the HIV/AIDS Stigma Instrument – Nurse (HASI-N)

Abstract Illness-related stigma remains a serious problem in the management of HIV disease in Africa. This article describes a series of study phases conducted to develop and validate an instrument to measure HIV/AIDS-related stigma as perpetrated and experienced by nurses. Data were collected in Lesotho, Malawi, South Africa, Swaziland and Tanzania, from 2004–2006. The first phase was a qualitative study with focus group participants (n=251) to gather emic and etic descriptions of HIV/AIDS-related stigma in the five countries. Based on the qualitative data, a 46-item instrument was developed and tested during a second phase in the same five countries (n=244). The result of this phase was a 33-item, three-factor instrument with an average Cronbach alpha of 0.85. A third phase tested the instrument in 1474 nurses. The result was a final 19-item instrument, the HIV/AIDS Stigma Instrument – Nurse (HASI-N), comprised of two factors (Nurses Stigmatizing Patients and Nurses Being Stigmatized) with a Cronbach alpha of 0.90. Concurrent validity was tested by comparing the level of stigma with job satisfaction and quality of life. A significant negative correlation was found between stigma and job satisfaction. The HASI-N is the first inductively derived instrument measuring stigma experienced and enacted by nurses. It has the potential to be used not only to measure stigma, but also to develop stigma-reduction interventions.

HIV Stigma and Nurse Job Satisfaction in Five African Countries

&NA; This study explored the demographic and social factors, including perceived HIV stigma, that influence job satisfaction in nurses from 5 African countries. A cross‐sectional survey was conducted of nurses (n = 1,384) caring for patients living with HIV infection in Lesotho, Malawi, South Africa, Swaziland, and Tanzania. Total job satisfaction in this sample was lower than 2 comparable studies in South Africa and the United Kingdom. The Personal Satisfaction subscale was the highest in this sample, as in the other 2. Job satisfaction scores differed significantly among the 5 countries, and these differences were consistent across all subscales. A hierarchical regression showed that mental and physical health, marital status, education level, urban/rural setting, and perceived HIV stigma had significant influence on job satisfaction. Perceived HIV stigma was the strongest predictor of job dissatisfaction. These results provide new areas for intervention strategies that might enhance the work environment for nurses in these countries.

Measuring HIV Stigma for PLHAs and Nurses over Time in Five African Countries

The aim of this article is to document the levels of HIV stigma reported by persons living with HIV infections and nurses in Lesotho, Malawi, South Africa, Swaziland and Tanzania over a 1-year period. HIV stigma has been shown to negatively affect the quality of life for people living with HIV infection, their adherence to medication, and their access to care. Few studies have documented HIV stigma by association as experienced by nurses or other health care workers who care for people living with HIV infection. This study used standardised scales to measure the level of HIV stigma over time. A repeated measures cohort design was used to follow persons living with HIV infection and nurses involved in their care from five countries over a 1-year period in a three-wave longitudinal design. The average age of people living with HIV/AIDS (PLHAs) (N=948) was 36.15 years (SD=8.69), and 67.1% (N=617) were female. The average age of nurses (N=887) was 38.44 years (SD=9.63), and 88.6% (N=784) were females. Eighty-four per cent of all PLHAs reported one or more HIV-stigma events at baseline. This declined, but was still significant 1 year later, when 64.9% reported experiencing at least one HIV-stigma event. At baseline, 80.3% of the nurses reported experiencing one or more HIV-stigma events and this increased to 83.7% 1 year later. The study documented high levels of HIV stigma as reported by both PLHAs and nurses in all five of these African countries. These results have implications for stigma reduction interventions, particularly focused at health care providers who experience HIV stigma by association.

Urban and rural differences in HIV/AIDS stigma in five African countries.

Stigma and discrimination have been widely researched, especially within the context of health. In the context of HIV/AIDS, studies have shown that stigma variously impacts on prevention, on accessing treatment, and on care programmes. Decreasing stigma is therefore an important goal in HIV/AIDS programmes. This paper explores whether urban and rural differences existed in reported incidents of HIV stigma from five African countries. A descriptive, qualitative research design was used to explore the experience of HIV stigma of people living with HIV (PLHIV) and nurses. Focus group discussions were held with respondents to capture an emic and etic view of stigma and discrimination. The frequency of reported incidents shows that although comparable numbers of nurses and PLHIV were sampled, the PLHIV from both the urban and rural settings in all five countries conveyed more incidents of received stigma than did the nurses. The results suggest that treatment programmes and support structures need to be designed appropriately for the different settings.