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PubMed2000

Factor structure of the Grief Experience Questionnaire (GEQ).

The Grief Experience Questionnaire (GEQ; T.W. Barrett & T.B. Scott, 1989) is a self-report measure of grief responses, including some that have been associated with grief after a suicide (e.g., feelings of rejection, responsibility, shame, stigmatization, etc.). In this study, a sample of 350 university students who had experienced the death of a significant other completed the GEQ. A principal components analysis with varimax rotation yielded an 8-factor solution with satisfactory psychometric properties. Results clearly document that the GEQ is a multidimensional measure of grief phenomenology. It is concluded that although the GEQ has broad applicability, the scale as revised herein may have a special relevance to suicide bereavement, and may be of use in both research and clinically based applications.

Factor Analysis, Statistical↗

PubMed2002

Creating meaning and value in substance abuse education.

Medical faculty committed to teaching about substance abuse face the challenges of teaching about a stigmatized disease. They often work with little support and few colleagues. These clinician educators must find tools to help sustain them in this work. Knowledge of emerging data on effective diagnosis and treatment of substance abuse in the primary care setting and excellent clinical skills in managing patients with substance abuse are key. More important is the ability to find sustenance and inspiration in working with the addicted patients who have been our teachers.

Clinical Competence↗

PubMed2001

The negotiation of sexual relationships among school pupils in south-western Uganda.

The objective of the study was to explore how school-going adolescents in south-western Uganda negotiate sexual relationships. Qualitative data were obtained from 15 boys and 15 girls (14-18 years old), during a series of role plays, focus group discussions and one-to-one interviews. A questionnaire was administered to 80 pupils (12-20 years old) from the same school. Most of the pupils were sexually active. Sexual relationships between boys and girls were mediated by peers. Boys initiated relationships. Exchange played an important role in the negotiation of sexual relationships. Money or gifts were given and received in exchange for sexual favours and to strengthen the relationship. To maximize gains, some adolescents had sexual relationships with adults. Sexual relationships were characterized by ambiguity. Love is intertwined with sexual desire, money and prestige. Girls have to be explicit enough to get a good deal; if they are too explicit they will be stigmatized as 'loose' but if they are not interested in money they may be suspected of wanting to spread HIV. Boys try to persuade girls that they have money, but do not want to emphasize this too much. In sexual negotiations a boy must persuade a girl that although he is modern and sophisticated (i.e. experienced) he does not chase after every girl; the girl does not want to come over as an unsophisticated virgin, but does not want to give the impression that she is loose either. There is a tension between the traditional ideal of female chastity and submissiveness and the modern image of sexual freedom. Multiple partnerships were highly valued as a sign of sophistication. Condoms were not considered important. Interventions aimed at reducing the spread of HIV do not seem to be having an effect on the behaviour of this group of adolescents. On the contrary, risky attitudes and behaviour are part of an adolescent ideal of modernity and sophistication. New approaches are needed to persuade this group of the need for change. Shifting the source of interventions from adults to the adolescents themselves, encouraging girls to try other means of earning money and debunking the idea that having many partners is sophisticated may be productive alternatives.

Acquired Immunodeficiency Syndrome↗

PubMed2001

Living with HIV: women's experience in Burkina Faso, West Africa.

Our study aimed at studying HIV-infected women's experience with sharing serostatus with their partner and their group support. A survey was carried out among 79 seropositive women involved in a therapeutic trial in Bobo-Dioulasso, following freely consented prenatal HIV testing. The study revealed that women are reluctant to inform their partners and fear being stigmatized by relatives and friends. The major concern reported was health consequences and most women wished to receive care. The non-governmental organizations supporting people living with HIV were not known by these women, but providing this information raised a high interest and many women considered joining them soon and getting themselves involved. These community-based organizations, lead by qualified and highly motivated volunteers, could facilitate a better social integration of HIV infected women in Burkina Faso.

AIDS Serodiagnosis↗

PubMed2001

So much for keeping secrets: the importance of considering patients' perspectives on maintaining confidentiality.

Little data are available from patients' perspectives regarding the maintenance of confidentiality by care providers. Such data may be useful in determining the importance of confidentiality to patients and in developing appropriate policies and procedures regarding confidentiality. Three focus groups were conducted with support groups of rural HIV-positive patients. Text was coded inductively and analyzed with software designed for qualitative analysis. Participants perceived breaches of confidentiality in hospitals, clinics and health departments that occurred by word of mouth, computers, facsimile and written materials. Patients included sharing stigmatizing medical information among medical providers without prior consent as a breach. They made decisions about where to seek care based on the degree of professionalism of medical staff (which included respecting confidentiality), clinic location or the level of security of the organization's computer network since they believed that computers increase information access. Finally, participants believed that medical personnel should be taught the importance of maintaining confidentiality and that those who violated confidentiality should be punished. Patients would like confidentiality policies that require providers to: (1) explain procedures for sharing information, (2) request patients' specific consent for access to their medical records, even among other providers, and (3) punish those who breach confidentiality.

Attitude↗

PubMed2002

HIV/AIDS and care provider attributions: who's to blame?

The discovery of HIV/AIDS prompted a profusion of research focusing on the disease and its causes. Though the bulk of this research emphasizes behavioural risk factors, treatment and disease progression, researcher efforts are beginning to examine the public's attitude toward individuals who are HIV-positive or have developed AIDS. Utilizing Weiner's Attribution Theory, the current study examines the beliefs of social service providers who work directly with individuals affected by HIV/AIDS. Forty-six (28 female and 18 male) HIV/AIDS social service providers from three community-based organizations were asked to read a hypothetical scenario depicting an individual at-risk for HIV/AIDS because of multiple high-risk behaviours. The gender of the target was manipulated and at the conclusion of the scenario participants completed a questionnaire designed to assess attributions. Results of the study show that social service providers who perceive individuals as more responsible for their illness report increased anger, attribute more blame and express less willingness to help those at-risk for HIV/AIDS. This research suggests that despite growing numbers of media campaigns and national distribution of information regarding the disease and its transmission, in general, people continue to stigmatize and place blame on those at-risk.

Adult↗

PubMed2003

Attitudes to HIV voluntary counselling and testing among mineworkers in South Africa: will availability of antiretroviral therapy encourage testing?

We conducted a study to identify attitudes that influence uptake of HIV voluntary counselling and testing (VCT) amongst gold mine workers in South Africa; 105 healthy men were interviewed. The level of basic knowledge of HIV was high, but reported awareness of the extent of HIV infection in the workforce and perceived personal risk of HIV infection was low. Health issues were considered the most important indication for HIV testing and one-third had been tested. Fear of testing positive for HIV and the potential consequences, particularly stigmatization, disease and death, were the major identified barriers to VCT. Half of the participants felt workplace education programmes needed to be improved to promote VCT access. Twenty-six per cent became more favourably inclined towards HIV testing in response to information on improvements that have been made to the confidentiality and convenience of the company's VCT service. Only 14% then indicated that they would be more likely to access VCT if antiretroviral therapy became available. A vigorous community education programme is essential if the introduction of ART is to be effective in promoting uptake of VCT.

Adult↗

PubMed2003

Parental views on disclosure of diagnosis to their HIV-positive children.

Parents of HIV-positive children are known to delay disclosure of diagnosis. This study examines the concerns parents attending a South London family clinic had about disclosure of diagnosis to school-aged children with HIV, to establish the stages they were at in terms of the disclosure process and to find out what plans they had regarding further disclosure. Thirteen families with vertically-infected children who did not know their HIV diagnosis were included in the study. Findings showed that parents generally partially disclose information about the illness without naming it and delay full disclosure. The most frequently given reason for delay in talking to their child about HIV was fear that the child may accidentally reveal their diagnosis, thereby simultaneously revealing maternal HIV status and exposing the family to potential stigmatization, discrimination and prejudice.

Adaptation, Psychological↗

PubMed2003

Disclosure of HIV infection in south India: patterns, reasons and reactions.

The aim of this study was to examine aspects related to self-disclosure of their seropositive status among 68 persons (35 men and 33 women) infected with HIV. Data was collected through in-depth interviews to assess ways in which HIV-related disclosure took place and factors that influenced disclosure. The data was subjected to both qualitative and quantitative analysis. Voluntary disclosure was noted in 44 subjects (65%), while in other 24 (35%) subjects disclosure occurred without consent. Of those who disclosed, 78% of the subjects reported self-disclosure to family members, 7% to friends and 15% exclusively to health professionals. Expectations of emotional and material support from the family members were one of the commonly cited reasons for voluntary disclosure. Only half of the subjects disclosed complete and truthful information while in the rest, disclosure was partial or disguised as a less stigmatizing illness. Stigma, fear of discrimination, disgrace to family and self and futility were reported as the main reasons for non-disclosure. The majority of the subjects (73%) reported anticipation of negative societal reaction as the main concern following disclosure. In India, where HIV-related counselling services are still not freely available, there continue to be non-uniform practices related to confidentiality and disclosure. The findings of this study are important in identifying cultural factors related to disclosure in HIV infection and highlight the need to examine the varying patterns and concerns related to disclosure among HIV-infected individuals.

Adolescent↗

PubMed2003

Problems with HIV/AIDS prevention, care and treatment in Togo, West Africa: professional caregivers' perspectives.

This paper used accounts of professional caregivers to HIV/AIDS patients in Lomé, Togo, West Africa to explore the impacts of cultural, institutional and socio-economic factors in the fight against HIV/AIDS. Thirteen health professionals and 17 non-health professionals who work with people living with HIV/AIDS were interviewed in June and July 2002 in Lomé, Togo. The study found that, in Togo there are some cultural, socio-economic and institutional practices that put Togolese at risk of contracting HIV and complicate the care of those who become infected. People with HIV/AIDS face socio-economic, emotional and psychological battles as they attempt to deal with their physical health and the social reactions to such a stigmatizing disease. Thus, in order to contain the spread of HIV/AIDS, people living with HIV/AIDS, family caregivers, traditional healers as well as the public must be educated about the importance of preventing the disease and how each group can help achieve success in its control. Interventions in prevention and care should be designed with an awareness of these structural factors that contribute to the spread of AIDS and compromise the quality of care given to those who become infected.

Acquired Immunodeficiency Syndrome↗

PubMed2004

Traditional beliefs about the cause of AIDS and AIDS-related stigma in South Africa.

AIDS-related stigmas are pervasive in some segments of South African society and stigmas can impede efforts to promote voluntary counselling and testing and other HIV-AIDS prevention efforts. The current study examined associations among the belief that AIDS is caused by spirits and supernatural forces, AIDS-related knowledge and AIDS-related stigmas. A street intercept survey with 487 men and women living in a Black township in Cape Town, South Africa showed that 11% (n=54) believed that AIDS is caused by spirits and supernatural forces, 21% (n=105) were unsure if AIDS is caused by spirits and the supernatural, and 68% (n=355) did not believe that AIDS is caused by spirits and supernatural forces. Multiple logistic regression analyses controlling for participant age, gender, years of education and survey venue showed that people who believed HIV-AIDS is caused by spirits and the supernatural demonstrated significantly more misinformation about AIDS and were significantly more likely to endorse repulsion and social sanction stigmatizing beliefs against people living with HIV-AIDS. However, nearly all associations between beliefs that AIDS is caused by spirits and AIDS stigmas were non-significant when logistic regressions were repeated with AIDS-related knowledge included as a control variable. This finding suggests that relationships between traditional beliefs about the cause of HIV-AIDS and AIDS stigmas are mediated by AIDS-related knowledge. AIDS education efforts are urgently needed to reach people who hold traditional beliefs about AIDS to remedy AIDS stigmas.

Adult↗

PubMed2005

Keeping it together: stigma, response, and perception of risk in relationships between drug injectors and crack smokers, and other community residents.

Sexual relations between drug injectors (IDUs) and crack smokers (CS), and non-drug users are a major means of HIV spread to the broader population. However there is little literature describing community processes that regulate sexual and social partnerships among these groups. We describe these relationships in Bushwick, a low-income, mainly Latino neighbourhood in Brooklyn, NY. In this community, IDU and CS are heavily stigmatized, both by non-users and by some users. Known IDU/CS may find it harder to start and maintain social and sexual relationships, and to get jobs or support. Partially as a result of this stigma, IDU/CS attempt to 'keep it together' and hide either their drug use or its extent from other residents. Nevertheless, other residents believe, sometimes falsely, that they can distinguish users from nonusers. We describe some potential negative consequences of these beliefs and interactions, including their effects on risk for HIV and other sexually transmitted diseases.

Adolescent↗

PubMed2006

HIV-disclosure in the context of vertical transmission: HIV-positive mothers in Johannesburg, South Africa.

HIV-disclosure among childbearing women remains poorly understood, particularly in sub-Saharan Africa. This paper chronicles disclosure experiences of 31 women attending prevention of mother-to-child HIV transmission services in Johannesburg. Data collection entailed repeat in-depth interviews over a nine-month period. Virtually all women (93.5%) had told at least one person (usually a partner), most voluntarily and within a week of the test result. Secondary disclosure was most likely with female family members, through indirect means and involuntary. Confidentiality breach by primary targets likely contributed to the observed high rates of involuntary secondary disclosure and negative secondary disclosure experiences. For most mothers, voluntary disclosure was driven by the desire to ensure adequate infant care and avoid vertical HIV transmission. The impact of disclosure was not always clear-cut. While most primary disclosure experiences were ultimately constructive, secondary disclosure more likely led to rejection, stigmatization and the withholding of financial support. Our data illustrate the influence of social contextual factors on disclosure patterns and impact. For these mothers, socio-cultural norms, the current media and political environment surrounding HIV/AIDS, household composition and social networks and childbearing status shaped disclosure experiences; sometimes constraining disclosure circumstances and sometimes creating a safe space to disclose. Programmatic implications are also discussed.

Adaptation, Psychological↗

PubMed2006

Qualitative changes in AIDS preventative attitudes in a rural Senegalese population.

Recent changes in knowledge and attitudes towards AIDS in a rural population of Senegal were assessed comparing two cross-sectional studies conducted six years apart (1997 and 2003). Random samples of 866 and 709 adults aged 15-59 were included. Sociodemographic characteristics of the two population samples were very similar. The proportion of those who estimated their personal risk of being infected by HIV as high or very high fell from 49.1% in 1997 to 17.2% in 2003. The proportion of those who reported having already changed their behaviour to protect themselves from AIDS fell from 56.3% to 24.9%. Methods cited as protection against HIV changed over the period. Fidelity and/or partner selection was cited by 93% of respondents in 1997 and 58% in 2003 when suspicion of potentially soiled materials appeared. Finally, attitudes towards persons living with HIV or AIDS (PLWHA) in 2003 were ambivalent: while 73.9% thought that a PLWHA should not be allowed to mix with other villagers, 65.1% would be ready to provide care to a PLWHA. Drastic changes in attitudes towards the AIDS threat could be identified over the period. AIDS preventive attitudes measured in 1997 were not sustained in 2003, while stigmatization of PLWHA was very widespread.

Acquired Immunodeficiency Syndrome↗

PubMed2006

Stigma and HIV infection in Russia.

Few studies have examined the personal and social consequences of stigma associated with HIV infection in Russia, a country with one of the most rapidly advancing HIV epidemics globally. By May 2005, Samara Oblast, Russia had 24,022 notified seropositive individuals. Focus-group discussions with randomly sampled seropositive and seronegative individuals, matched by age, gender and education were selected from the general population and used to provide an informal forum for discussion of attitudes to HIV and potentially stigmatizing behavior. The results demonstrated that the perception that HIV was associated with immoral behaviour underpinned stigma. Discriminating attitudes are strongly associated with misperceptions regarding transmission and frequent over-estimation of risks from casual contact. The general population was unforgiving to those who had become infected sexually or through drug use. Infection through a medical procedure or from an assault was perceived as a likely route of infection. Knowledge of population attitudes and perceptions, as well as those who are HIV-positive, is critical for successful interventions and to encourage people to come forward for HIV testing. This research offers insights into the distance that needs to be traveled if stigma is to be addressed in wider efforts to control HIV in Russia.

Adolescent↗

PubMed2007

Mandatory pre-marital HIV testing in Nigeria: the public health and social implications.

The prevalence of HIV infection among individuals referred from faith-based organizations (FBOs) in south-eastern Nigeria for mandatory pre-marital HIV screening was determined. Of the total of 319 individuals (148 males, 171 females) screened, 25 (7.8%, 95%CI: 4.9-10.7%) were confirmed HIV-positive, comprising 13 (8.8%, 95%CI: 4.2-13.4%) males and 12 (7%, 95%CI: 3.2-10.8%) females. No significant difference was observed in the association between HIV infection and gender (chi2=0.58, df = 1, P < 0.05). The highest prevalence of HIV infection (8.9%) was recorded among individuals in the 21-30 years age category, while the least HIV infection prevalence (5.3%) was observed among persons above 40 years old. There was no significant difference in the association between HIV infection and age (chi2=0.68, df = 3, P < 0.05). Mandatory pre-marital HIV screening could generate social stigmatization and infringement of the fundamental human rights of infected individuals. Voluntary counselling and confidential HIV testing and especially pre- and post-test counselling as the basis of pre-marital HIV testing are more desirable. Guidelines for the management of test-positive individuals and non-concordant couples and the safeguarding of confidentiality should be developed. Training and capacity building for religious leaders, to appropriately manage social issues associated with HIV/AIDS as it affects their organizations, are recommended.

Adolescent↗

PubMed1989

Prejudice and AIDS: the views and experiences of people with HIV infection.

Discrimination against people on the basis of physical or mental infirmity is common and creates a considerable burden for sufferers. There has been considerable debate about the prejudice against people with disease resulting from human immunodeficiency virus (HIV) infection. This study reports on the views and experiences of stigmatization by 192 outpatients with HIV infection interviewed at two London teaching hospitals. Despite reticence about discussing their infection, one quarter of patients had received negative reactions from confidants. The implications for health and social policies are discussed.

Adult↗

PubMed1992

Hospital care for drug users with AIDS or HIV infection in France.

Health care workers in three AIDS hospital units in the Paris region were interviewed to analyse the issues related to the care of addicted HIV patients in the light of principles and practices regarding drug abuse treatment in France. Health care workers report a large variety of disruptive incidents involving some addicted in-patients. To deal with these difficulties, physicians advocate the separation of drug abuse treatment and HIV disease treatment. However, practices differ between the three settings regarding the management of patients. In two units, a contract is made with the patient covering general and specific rules of hospital stay and sanctions should the contract be broken. In the third unit, the use of such a contract is considered to be a continuation of drug abusers' stigmatization and an obstacle to the adoption of the 'sick role' by the addicted patient.

Attitude of Health Personnel↗