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PubMed2003

Doubting the existence of AIDS: a barrier to voluntary HIV testing and counselling in urban Mali.

Qualitative research was carried out in the Malian cities of Sikasso and Bamako with a view to setting up HIV voluntary testing and counselling (VCT) services and a separate programme to enable young people to improve their sexual health. The most striking finding was that a large number of respondents said they did not believe in the existence of AIDS. Reasons for disbelief were related to the perceived lack of AIDS cases in China, the inability of the virus to be transmitted by mosquitoes and confusion about mother-to-child transmission. Highly educated individuals were very sceptical of the existence of the illness, thinking it to be a Western plot to encourage condom use in order to halt the growth of the African population. Those who were more likely to believe in the existence of the illness were less educated or uneducated people who had personally seen someone sick with AIDS, often when they had been on labour migration to Côte d'Ivoire where HIV prevalence is higher. Respondents thought it likely that this scepticism will limit the use of VCT services. Other reasons for the potential non-use of services included the fact that some people lacked confidence in the competence of the laboratory technicians and were afraid that those testing positive would be highly stigmatized by the community. Thus, widespread awareness-raising campaigns are needed before any centres can be set up. Participatory education programmes are required to address HIV in the context of other health risks. This would allow people to inter-actively shape the debate about HIV/AIDS to fit their own needs. Currently, they are presented with information about the illness in a unidirectional manner via the media or health educators which seems to fuel their scepticism.

AIDS Serodiagnosis↗
PubMed2005

Evaluation of a home-based voluntary counselling and testing intervention in rural Uganda.

BACKGROUND: Uptake of HIV test results from an annual serosurvey of a population study cohort in rural southwestern Uganda had never exceeded 10% in any given year since inception in 1989. An intervention offering counselling and HIV results at home was conducted in four study villages following the 2001 serosurvey round, and followed by a qualitative evaluation exploring nature of demand and barriers to knowing HIV status. METHODS: Data from annual serosurveys and counsellor records are analyzed to estimate the impact of the intervention on uptake of HIV test results. Textual data are analyzed from 21 focus group discussions among counsellors, and men and women who had received HIV test results, requested but not yet received, and never requested; and 34 in-depth interviews equally divided among those who had received test results either from counselling offices and homes. RESULTS: Offering HIV results at home significantly increased uptake of results from 10 to 37% for all adults aged 15 (p<0.001), and 46% of those age 25 to 54. Previous male advantage in uptake of test results was effectively eliminated. Focus group discussions and in-depth interviews highlight substantial non-monetary costs of getting HIV results from high-visibility public facilities prior to intervention. Inconvenience, fear of stigmatization, and emotional vulnerability of receiving results from public facilities were the most common explanations for the relative popularity of home-based voluntary counselling and testing (VCT). It is seen as less appropriate for youth and couples with conflicting attitudes toward testing. CONCLUSIONS: Home delivery of results revealed significantly higher demand to know HIV status than stubbornly low uptake figures from the past would suggest. Integrating VCT into other services, locating testing centres in less visible surroundings, or directly confronting stigma surrounding testing may be less expensive ways to reproduce increased uptake with home VCT.

AIDS Serodiagnosis↗
PubMed2001

Vaginal thrush: perceptions and experiences of women of south Asian descent.

It is estimated that 75% of all women will, at some time in their lives, experience at least one episode of vaginal thrush. This paper reports the perceptions and experiences of women of South Asian descent living in England, who were suffering or had suffered from thrush. The paper draws upon data collected during 20 semi-structured interviews. The women reported that thrush sometimes had a considerable impact on their lives, making some of them feel 'dirty', embarrassed, depressed and stigmatized. Some women delayed seeking professional help even if they had access to a female General Practitioner. Access to professional care was sometimes hampered by language barriers, but more often by structural factors of gender and social class. Although almost all the women came originally from Gujarat (or had parents who were born in Gujarat), they reported a wide range of experiences. Since vaginal thrush causes much distress and since it is often preventable, the findings presented here have implications for clinical practice. The paper concludes with suggestions for future developments.

Adult↗
PubMed2001

How individuals coping with HIV/AIDS use the Internet.

Although identified 20 years ago, HIV/AIDS remains among the most serious disease epidemics of modern times. Because of the stigmatization associated with infection, no health crisis has rivaled HIV/AIDS in underscoring the need for emotional, informational and instrumental support. The critical role that support plays in coping with HIV/AIDS is well documented. Adults with HIV/AIDS have utilized traditional means of support--family, friends and community-based service organizations--in coping with their illness. Recently, however, the Internet has been recognized as a potential avenue for support. Although the Internet may prove promising, little is known about how the wide array of resources available via the Internet is used. The purpose of this study was to investigate how individuals with HIV/AIDS use the Internet in coping with their illness. This research study employed a descriptive qualitative design that used in-depth, semi-structured, face-to-face interviews for data collection. The sample of 10 purposefully selected individuals living with HIV/AIDS reflected diversity in gender, age, race, education, employment, number of years living with HIV/AIDS and Internet use. Data analysis guided by the constant comparative method revealed four themes. Individuals with HIV/AIDS use the Internet for finding information, making social connections, advocating and escaping.

Acquired Immunodeficiency Syndrome↗
PubMed1993

A re-assessment of health education on HIV/AIDS for young heterosexuals.

Despite a fairly high level of public knowledge about HIV there has, apparently, been little behavioural response to the disease by heterosexuals. Condoms are still used by young people primarily for contraceptive purposes. There are serious cultural and structural factors that impede the practice of safer sex, and for most young people HIV has little salience. They associate the disease with socially distant, stigmatized groups and do not feel personally vulnerable. Increase evidence suggests that the risk of HIV infection in Britain to non-injecting heterosexuals in most geographical areas is currently very low, which undermines appeals to individuals' perceived vulnerability. An alternative approach to HIV/AIDS education would be to promote safer sex practices indirectly, by addressing other preexisting sexual concerns of young people, in particular the prevention of unwanted pregnancy. This might be achieved through a comprehensive sex education programme involving small group work to actively learn communication and negotiation skills and to empower young women. However, such an approach would need to be carefully evaluated.

Acquired Immunodeficiency Syndrome↗
PubMed2005

Factors associated with mammographic decisions of Chinese-Australian women.

BreastScreen (a free breast cancer screening service) has been implemented in Australia since 1991. Surveys conducted overseas consistently report that women of Chinese ancestry have low participation rates in breast cancer screening. Although Chinese women's use of breast cancer screening services has been investigated abroad, to date there are few studies of mammographic screening behavior among Chinese-Australian women. The purpose of this study is to explore and investigate the factors associated with mammographic decisions of Chinese-Australian women. Using a qualitative approach, in-depth interviews were conducted with 20 Chinese-Australian women. These were augmented by additional data from ethnographic observations. The findings show two facilitators: organizational factors (an invitation letter from BreastScreen and seniors' clubs arrangements) and the influence of 'significant others'. Barriers identified were fear perceptions of mammography, modesty and fear of stigmatization. This study provides a useful framework for designing and implementing mammographic screening services for Chinese-Australian women that may improve their participation rates.

Aged↗
PubMed2001

Dissecting a population genome for targeted screening of disease mutations.

Compared to mixed populations, population isolates such as Finland show distinct differences in the prevalence of disease mutations. However, little information exists of the differences on the prevalence of different disease alleles in regional populations with different history of multiple bottlenecks. We constructed a DNA-array and monitored the prevalence of 31 rare and common disease mutations underlying 27 clinical phenotypes in a large population-based study sample. Over 64 000 genotypes were assigned in 2151 samples from four geographical areas representing early and late settlement regions of Finland. Each sample was analyzed in duplicate and a total of 142 000 array-derived genotyping calls were made. On average one in three individuals was found to be a carrier of one of the 31 monitored mutations. This should remove fears of the stigmatizing effect of a carrier-screening program monitoring multiple diseases. Regional differences were found in the prevalence of mutations, providing molecular evidence for the deviating population histories of regional subisolates. The mutations introduced early into the population revealed relatively even distribution in different subregions. More recently introduced rare mutations showed local clustering of disease alleles, indicating the persistence of population subisolates and the effect of multiple bottlenecks in molding the population gene pool. Regional differences were observed also for common disease alleles. Such precise information of the carrier frequencies could form the basis for targeted genetic screens in this population. Our approach describes a general paradigm for large-scale carrier-screening programs also in other populations.

Alleles↗
PubMed2006

Ethical issues in medical-sequencing research: implications of genotype-phenotype studies for individuals and populations.

Advances and declining costs in sequencing technology will result in increasing number of studies with individual sequence data linked to phenotypic information, which has been dubbed medical sequencing. At least some of this linked information will be publicly available. Medical sequencing raises ethical issues for both individuals and populations, including data release and identifiability, adequacy of consent, reporting research results, stereotyping and stigmatization, inclusion and differential benefit and culturally and community-specific concerns. Those issues are reviewed, along with possible solutions to them.

Ethics, Medical↗
PubMed1977

Children in limbo: a study of New York City "boarder babies".

Some children not in need of medical care are living on hospital wards-some spend a few days, some, many years. This article presents the findings of a pilot study made to find out who these children are and why they are there. It suggests that stigmatizing labels as well as bureaucratic indifference may contribute to the denial of alternate care for these children.

Adolescent↗
PubMed1996

Anticipatory grief and AIDS: strategies for intervening with caregivers.

Anticipatory grief may have beneficial effects for caregivers of people with HIV infection or AIDS. However, the duration of the illness and the stigmatization and multiple losses associated with the disease may impede the caregiver's ability to effectively engage in the grief process. This article discusses the impact of these aspects of the disease on the anticipatory grief process and mourning tasks for caregivers at each stage of the illness. Intervention strategies developed to help the caregiver remain actively involved with the patient and simultaneously grieve losses and prepare for death are specified.

Acquired Immunodeficiency Syndrome↗
PubMed2001

A female perspective on living with HIV disease.

The study discussed in this article explored women's views of the positive and negative aspects of life with HIV. Even in the face of a stigmatizing physical illness and with elevated levels of depression and anxiety, the 55 women interviewed for the study were able to identify a large number of positive events; for many, HIV served as a motivating force for positive change. Common negative experiences included physical symptoms, a limited life span, alienation, and stigma. Results suggest that whereas women demonstrate a remarkable capacity to adapt, there are a number of specific areas where social services and community interventions can be targeted.

Adaptation, Psychological↗
PubMed2004

Counseling, support, and advocacy for clients who stutter.

Fluency disorders are communicative disabilities that can lead to psychosocial and emotional issues. The most prevalent of these disorders is stuttering. People who stutter may cope with stigmatization and discrimination throughout their lives as a result of misconceptions and misinformation about the disability's etiology and manifestations. Mental health professionals have contributed to these negative experiences by their lack of knowledge about stuttering. This article provides information on the physical, psychological, and social causal factors and implications of fluency disorders, so that social workers can engage in ethical practice to alleviate the mental anguish of their clients who stutter and enable them to reach their full potential. An advocacy role with other professionals, such as educators and speech-language pathologists, is described.

Adult↗
PubMed2005

Avoidance coping and HIV risk behavior among gay men.

This study describes how coping strategies are related to unprotected anal intercourse (UAI) among gay men, and provides support for a new theoretical underpinning for HIV prevention practice and research with this population. A sample of 470 gay and bisexual men completed a self-administered questionnaire that included a measure of coping strategies used in relation to a recent problem. More participants who reported recent UAI endorsed avoidance strategies than did those who did not report UAI. There was a positive relationship between avoidance coping scores and odds for reported UAI. Among the study's implications was the importance of the larger context in which prevention efforts with this population occur, one that is marked by stigmatization, discrimination, loneliness, and other stresses. In addition, prevention practice and research must attend to the meaning and purpose of sex in gay men's lives.

Adaptation, Psychological↗
PubMed2002

'Men leave me as I cannot have children': women's experiences with involuntary childlessness.

BACKGROUND: This study explores the concerns and experiences related to involuntary childlessness of infertile women living in a diverse cultural urban community in South Africa. METHODS: In-depth interviews were conducted with 30 women seeking treatment for involuntary childlessness. Women were interviewed at the time of their first visit to an infertility clinic in a tertiary referral centre. RESULTS: All women verbalized intense emotions about their involuntary childlessness. In addition, a large number of women experienced negative social consequences including marital instability, stigmatization and abuse. CONCLUSIONS: These findings demonstrate that infertility can have a serious effect on both the psychological well-being and the social status of women in the developing world. Furthermore, the study provides insight into the cultural context of involuntary infertility in South Africa. The delivery of good infertility care in a community requires awareness of the implications of infertility and insight into the context in which these occur. Since many of the negative social implications of infertility are probably rooted in low status women in the developing world, effective intervention will ultimately require social, economical and political changes.

Emotions↗
PubMed2004

'You are a man because you have children': experiences, reproductive health knowledge and treatment-seeking behaviour among men suffering from couple infertility in South Africa.

BACKGROUND: In Africa, infertility traditionally has been viewed as a female problem. This study explores reproductive health knowledge, health-seeking behaviour and experiences related to involuntary childlessness in men suffering from couple infertility. METHODS: Twenty-seven men from a diverse cultural urban community in South Africa participated in in-depth interviews at the time of their first visit to an infertility clinic in a tertiary referral centre. RESULTS: Men had little knowledge about the physiology of human fertility, causes of infertility and modern treatment options. Awareness of male factor infertility was, however, high. Most men appeared involved in the health-seeking process. Men described their emotional reactions to childlessness and the impact of infertility on marital stability, and many reported that infertile men suffered from stigmatization, verbal abuse and loss of social status. CONCLUSIONS: These findings improve our understanding of the reproductive health needs of men suffering from couple infertility in Africa. This understanding is essential for the effective integration of male partners into modern infertility management. The need for appropriate counselling of men and, most particularly, for education of the community is recognized.

Community-Institutional Relations↗
PubMed1996

Preventing sexually transmitted diseases through individual- and population-based public health approaches: social and political implications.

Epidemiology provides the scientific rationale for public health decisions. Epidemiologists construct taxonomic collectives on the basis of individual attributes, or "risks." One of the public health approaches to the control of sexually transmitted diseases (STDs) is to identify population-based strategies that can be targeted to these risk groups. Public health decisions, however, are largely political and open to discussion beyond the academic environment. Terms such as "risk group" have different meaning in public discourse than in scientific jargon. The language of epidemiology, when used in public health campaigns to control STDs, has led to stigmatization and victimization of individuals. Public health policies that ignore the political and social organization of populations are in danger of becoming instruments of social and political repression.

Health Promotion↗
PubMed2004

Active music therapy in the treatment of multiple sclerosis patients: a matched control study.

Twenty multiple sclerosis patients (14 female, 6 male) were involved in the study, their ages ranging rom 29 to 47 years. Ten participants formed the therapy group, and 10 the control group. The groups were comparable on the standard neurological classification scheme Expanded Disability Status Scale (EDSS). Exclusion criteria were pregnancy and mental disorders requiring medication. Measurements were taken before therapy began (T1), and subsequently every 3 months (T2-T4). This battery included indicators of clinical depression and anxiety (Beck Depression Inventory and Hospital Anxiety and Depression Scale), a self-acceptance scale (SESA) and a life quality assessment (Hamburg Quality of Life Questionnaire in Multiple Sclerosis). In addition, data were collected on cognitive (MSFC) and functional (EDSS) parameters. Patients in the therapy group received 3 blocks of music therapy in single sessions over the course of the one year project (8 to 10 sessions respectively). The music therapy approach used for this study is based on the Nordoff Robbins approach (Nordoff & Robbins, 1977). There was no significant difference between the music therapy treatment group and the control group. However, the effect size statistics comparing both groups show a medium effect size on the scales measuring self esteem (d = 0.5423, r =.026), depression HAD-D (d = 0.63, r = 0.310) and anxiety HAD-A (d = 0.63, r = 0.310). Significant improvements were found for the therapy group over time (T1-T4) in the scale values of self esteem, depression, and anxiety. Given the stigmatizing effect of a chronic degenerative disease, the positive benefits of music therapy point to a realm of aesthetic considerations in assessing clinical improvement.

Adult↗
PubMed1992

Applying stigma theory to epilepsy: a test of a conceptual model.

Tested a theoretical model that sought to explain the association of stigma to self-esteem among adolescents with epilepsy. The model depicted hypothesized relationships among several characteristics of epilepsy (seizure type, seizure frequency, and duration of epilepsy), perceived stigma, management of disclosure, and self-esteem. Subjects were 64 adolescents 12 to 20 years old with idiopathic epilepsy. In a hierarchical multiple regression analysis, variables were entered into the equation in the order specified a priori by the model. Results showed that the data supported some hypotheses tested in the model: (a) Seizure type and seizure frequency predicted low self-esteem, and (b) the belief that epilepsy is stigmatizing predicted low self-esteem. However, several relationships of major theoretical significance were not realized. Explanations for why some aspects of stigma theory were not supported by the data are offered.

Adaptation, Psychological↗