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AIDS and the family: implications for counselling.

The presence of HIV spectrum illness stimulates a powerful emotional reaction from a patient's family and friends. Grief and shock over the infection, and its implications are frequent observations. Sadness, anxiety, helplessness and anger are also common. Health care staff should address these responses in order to strengthen coping skills and maximize interpersonal comfort. Stigmatization and isolation are major stressors. Bereavement is complicated by fear, shame, dependency and hopelessness. Therefore, a task in counselling is to maintain the integrity and supportiveness of the patient's social unit by encouraging open communications between those involved and by educating about AIDS. Information should be provided on HIV transmission, self-protection, and illness progression as well as the safety of causal contacts and the practices of 'safer sex'. The significant others should retain outside interests and be encouraged to seek help for patients from supportive social agencies. Instillation of hope lends benefit to patient, family and friends. Kind, non-judgmental counselling and good quality medical care should be made available, especially since HIV-related disorders are increasingly becoming a chronic disease. Advocacy for the significant others translates into better adjustment and it enhances the patient's medical prognosis.

Acquired Immunodeficiency Syndrome↗

Evaluation of a home-care/counselling AIDS programme in Kgatleng district, Botswana.

In 1988 a programme for care and follow-up of HIV-positive persons and AIDS patients was implemented by the existing health facilities (district health team and hospital team) of Kgatleng District, Botswana. A survey study in 1991 tried to indicate the effectiveness and bottlenecks of the programme. All advisory nurses (AN) were interviewed via two questionnaires: one pertaining to case management of clients and one on their perceptions of their work. Seventy-two of 109 HIV-infected persons accepted and received counselling. Response of the 72 varied: 26 with a good, 34 with a moderate and 12 with a bad response. Prevention, contact tracing and home visiting were studied, as well as ANs' experiences and opinions of the programme. Some behavioural change by clients was indicated by the results though its extent remains questionable. Programme problems included client migration and refusal of counselling, and discontinuation of HIV-testing facilities. Once a relationship was established, confidentiality, questions and fear of stigmatization posed major problems. One-to-one support of ANs could help them cope better with these problems as well as discuss their own worries.

AIDS Serodiagnosis↗

Drug misuse and suicide: assessing the impact of HIV.

The mortality rate among drug users is higher than that of the general population. There is some evidence that the risk of suicide is also higher, although major methodological difficulties tend to cast doubt on their accuracy. The factors generally known to be associated with suicide such as mental and physical health problems, poor family relationships, social isolation and stressful life events are also associated with drug misuse. Illicit drugs may be used as a form of self-medication for anxiety and depression, but this draws an individual into a life that is likely to increase stress levels. For a drug user already stigmatized and detached from conventional society, becoming HIV positive can lead to greater stress and isolation. The impact of HIV on individuals physically and psychologically damaged by drug misuse is difficult to predict. There is little research that is attempting to determine who is most at risk and the nature of the factors that will predict an attempt at self-harm. If those who are most likely to attempt suicide are to be detected and adequate care provided by health professionals, risk and protective factors need to be identified in drug-using communities in which HIV is present or likely to occur.

Amphetamines↗

An epidemic of apprehension: questions about HIV/AIDS to an east African newspaper health advice column.

While AIDS awareness is almost universal in Uganda, cultural values discourage open discussion of sexual behaviour. Thus many questions remain unasked, especially in public. This study managed to analyse some of these queries by examining 1252 letters written spontaneously to a newspaper health advice column: of the letters, more than 325 included specific questions about HIV/AIDS. Being written, the questions include topics too embarrassing or stigmatized to voice in a spoken forum. The most common underlying emotions in the letters about HIV/AIDS were apprehension and anxiety. Many of the letters expressed, directly or indirectly, that people feel they cannot control their lives and cannot effectively protect themselves or their families from the threat of AIDS. Health education information about HIV/AIDS has been interpreted through an emotional filter of fear, vulnerability and distrust. Writers often turned to informal networks of peers, friends and relatives for confirmation of information about HIV/AIDS. However, this 'common knowledge' seemed frequently to serve as an obstacle to understanding and change rather than a source of support. People wrote that they feared transmission of HIV through unlikely and unavoidable daily activities such as eating. Fear magnified a wide range of common and persistent symptoms (rashes, coughs, fevers, sore throats) into the feared diagnosis of AIDS. Accurate information is vital and necessary, but information alone will not offset emotional vulnerability or anxiety. People also need to have their fears acknowledged and addressed in a credible way.

Acquired Immunodeficiency Syndrome↗

Managing HIV among serodiscordant heterosexual couples: serostatus, stigma and sex.

A qualitative study was conducted with 28 men and women in HIV-serodiscordant couples to explore the management of HIV in their relationship. Content analysis of the interviews revealed the role of serostatus and stigma in shaping partners' experience of HIV, sex and risk. Partners' differing serostatus often created feelings of alienation within the relationship. Compounding this interpersonal dynamic, the HIV service community was experienced as segregating because they were not funded or prepared to work with seronegative partners. Thus many, particularly seronegative women, felt invisible both within and outside of the relationship. Yet, the uninfected partners shared the burden of a stigmatizing illness because of the serodiscordant relationship. Stigma hindered communication about HIV and sex, disclosure to others and access to services. Many experienced HIV as a loss of their sexuality. Seronegative partners spoke about 'keeping sex alive' and often had to push to continue having sex. Couples used multiple strategies to manage HIV, including developing strict behavioural guidelines, connecting with other couples, accessing scientific information and becoming educators and activists. These altruistic activities, which also included participation in research, helped to transcend external and internalized stigma. Implications for developing interventions for HIV-serodiscordant couples are discussed.

Adult↗

Changes in patterns of risk.

Against the background of debate about the nature of risk in relation to HIV transmission, and resultant changes in risk discourse from risk group to risk behaviour to risk situation, declines in the velocity of HIV spread are being documented in countries with high levels of political commitment and multi-sectoral approaches. Biological markers of sexual activity such as sexually transmitted disease incidence and HIV prevalence corroborate reports that young adults in Uganda and Thailand are increasingly adopting preventive behaviours. Risk perception, perceived social and community norms and self-efficacy influence behavioural change, but structural and contextual factors, including resource constraints affecting HIV prevention programmes and the treatment of sexually transmitted diseases, and social marginalization and stigmatization affecting access of vulnerable populations to the means of prevention play determinant roles. Both patterns of risk for HIV infection and our understanding of them are evolving. More research is required to gain knowledge and understanding of factors such as partner concurrency as well as cultural and socio-economic determinants and contextual underpinnings of sexual and drug injecting networks. This is an essential first step to mobilizing communities to take action at the individual, partnership and community levels to reduce risk.

Adult↗

Factors influencing marital stability among HIV discordant couples in northern Thailand.

The burden of HIV in stable relationships places emotional, economic and physical stresses on families. We compared the influence of HIV notification on marital partnerships in northern Thailand among a cohort of HIV discordant couples, and identified factors associated with marital disruption. Data were collected using in-depth interviews with both members of six separated or divorced couples and 13 couples whose relationship remained intact. Five factors influenced marital stability following HIV notification: longer duration of relationship; economic constraints, extended family members' opinions, especially parents; the existence of children from the marriage; and fear of stigmatization by community members. Social influences, both overt and perceived, are important in shaping marital behaviour and decision-making in HIV epidemic areas. HIV counselling needs to be extended beyond the individual seeking testing to include stable partners (and perhaps further, to include the extended family), although it is recognized that this is not the norm for most HIV testing centres.

Acquired Immunodeficiency Syndrome↗

Zambia mental health country profile.

This country profile for Zambia was compiled between 1998 and 2002. The objectives of the exercise were to first of all avail policymakers, other key decision makers and leaders in Zambia, information about mental health in Zambia in order to assist policy and services development. Secondly, to facilitate comparative analyses of mental health services between countries. The work involved formation of a core group of experts who coordinated the collection of information from the various organizations in Zambia. The information was later shared to a broad spectrum of stakeholders for consensus. A series of focus group discussions (FGDs) supplemented the information collected. There are various factors that contribute to mental health in Zambia. It is clear from the Zambian perspective that social, demographic, economic, political, environmental, cultural and religious influences affect the mental health of the people. With a population of 10.3 million and annual growth rate of 2.9%, Zambia is one of the most urbanized countries in sub-Saharan Africa. Poverty levels stood at 72.9% in 1998. In terms of unemployment, the most urbanized provinces, Lusaka (the capital city), and the copper-belt are the most affected. The gross domestic product (GDP) is US$3.09 billion dollars while per capita income is US$300. The total budget allocation for health in the year 2002 was 15% while the proportion of the GDP per capita expenditure for health was 5.6%. The HIV/AIDS prevalence rates stand at 20% among the reproductive age group 15-49 years. Political instability and wars in neighbouring states has resulted in an influx of refugees. Environmental factors affecting the country include natural and man-made disasters such as floods and drought, mine accidents, and deforestation. To a large extent in Zambia, people who are mentally ill are stigmatized, feared, scorned at, humiliated and condemned. However, caring for mental ill health in old age is positively perceived. It is traditionally the duty and responsibility of the extended family to look after the aged. Gender based violence (GBV) is another issue. Women, who are totally dependent on their spouses economically, are forced by circumstances to continue living in abusive relationships to the detriment of their mental well-being. In Zambia, the family is considered sacrosanct and the affairs of the family members, private. It is within this context that GBV is regarded as a family affair and therefore a private affair, yet spouse beating has led to depression and in some cases death. In terms of psychiatric services, there are close to 560 beds for psychiatric patients across the country. Common mental disorders found in Zambia are acute psychotic episodes, schizophrenia, affective disorders, alcohol related problems and organic brain syndromes. About 70-80% of people with mental health problems consult traditional health practitioners before they seek help from conventional health practitioners. Over time the number of frontline mental health workers and professional staff has been declining. This is due to the 'brain drain', retirement, death and low output from training institutions. For practicing psychiatrists, only one is available for the whole country. Other key mental health workers such as psychologists, social workers and occupational therapists are also in short supply. All in all, the mental health services situation in Zambia could be described as critical, requiring urgent attention.

Aged↗

Pakistan mental health country profile.

The Republic of Pakistan is a South East Asian country with a population of over 140.7 million. Its population is fast growing and the majority (70%) live in rural areas with a feudal or tribal value system. The economy is dependent on agriculture and 35% of the population live below the poverty line. Islam is the main religion and 'mental illnesses' are stigmatized and widely perceived to have supernatural causes. The traditional healers along with psychiatric services are the main mental health service providers. The number of trained mental health professionals is small as compared to the population demands and specialist services are virtually non-existent. Lack of data on prevalence of various mental illnesses and monitory constraints are the major hurdles in the development of mental health services. A number of innovative programmes to develop indigenous models of care like the 'Community Mental Health Programme' and 'Schools Mental Health Programme' have been developed. These programmes have been found effective in reducing stigma and increase awareness of mental illness amongst the adults and children living in rural areas. Efforts by the government and mental health professionals have led to the implementation of a 'National Mental Health Policy' and 'Mental Health Act' in 2001. These aim at integrating mental health services with the existing health services, improving mental health care delivery and safeguarding the rights of mentally ill people. A favourable political will and the help of international institutions like the World Health Organization are required to achieve these aims.

Attitude to Health↗

Lithuania mental health country profile.

As a part of international mental health policy, programmes and services project, the 'country profile' instrument was used for assessment of mental health policy and services in the Republic of Lithuania. Analysis of contextual factors revealed high levels of social pathology (including violence, suicide and other self-destructive behaviour) with stigmatizing approaches by the general population to mentally disturbed persons and other vulnerable groups. Analysis of existing data about resources invested in the mental health care system raises questions for policymakers about the effectiveness of this traditional way of investment. The largest proportion of physical and human capital is concentrated in psychiatric institutions, with large numbers of beds, psychiatrists and increasing funding for medications, while other components of care--such as housing, psychosocial and vocational rehabilitation, community-based child mental health services--are not being developed. Statistical accounts keep the tradition of presenting processes as outcomes, while modern assessment of outcomes of services, programmes and policies are lacking. The findings from this country profile may be very useful in the development of modern mental health policies in the countries of Eastern and Central Europe, which have been deprived for decades from the opportunity to introduce evidence-based mental health policies and services.

Culture↗

Partners of problem drinkers: moving into the 1990s.

The literature on partners of problem drinkers is reviewed. Originally research and treatment viewed partners of problem drinkers from a pathological perspective. This paper suggests an alternative stress and coping perspective as less stigmatizing and more realistic in terms of the experiences of these individuals.

Journal Article↗

Recovery from fibromyalgia - previous patients' own experiences.

PURPOSE: To explore what patients that had completely recovered from fibromyalgia (FM) experienced as being important for their recovery. METHODS: Five women, aged between 37 and 49 were interviewed individually. The interviews were aimed at finding out about the recovery process and the women's daily lives at the time of the interview and before and after their diagnosis, with a special emphasis on social relationships and obligations. The interviews were analysed by qualitative thematic content analysis. RESULTS: These five women reported that they recovered irrespective of specific treatment. The study shows that resistance to the unpleasantness of the sick role and the stigmatization associated with the uncertain nature of the FM diagnosis promoted recovery. Instead of adapting their activities to pain, they used pain as a warning signal of too much stress in life. This significantly developed their ability to alter their life goals and everyday obligations. At the same time they managed to maintain a social role they considered to be consistent with their self-image. CONCLUSIONS: Patients can recover from FM. The information from these informants suggests that to struggle against a role of chronic patient and keep up with their social obligations and goals were of great importance.

Adult↗

Portrayal of childhood cancer in English language magazines in North America: 1970-2001.

This article is a content and discourse analysis of the portrayal of childhood cancer in English language magazines in North America. In a unique specification of published research on the media portrayal of disease, magazines were divided into three market or audience groupings called (1) science, (2) news/special interest, and (3) other (women/teen/parenting/health). The predominate frames or discoursesin these three groups were compared and differences were found amongst them and discussed in the article. Considerable evidence suggests that people with cancer are stigmatized. In the analyzed media focused on children, those with cancer are highly idealized and stereotyped. On the one hand, this can be thought of as a very positive portrayal of children in this situation. Children are described as if they possess heroic and idealized character traits, appearances, social characteristics, and personalities. Possible links between this idealized, polarized, and biased portrayal of children with cancer and their documented experiences of stigma are discussed.

Adolescent↗

Evaluating health knowledge: an alternative approach.

Health campaigns concerned with HIV and AIDS confront two important barriers: the stigmatized nature of the disease and cultural values that exacerbate the taboo nature of the information disseminated. The use of surveys in HIV and AIDS research requires respondents to provide descriptions of sexual acts and body parts as measures of their knowledge. Focus groups and interviews require respondents to speak publicly about these topics. Although many young people know about HIV and AIDS, they may not have the vocabulary to express their complete knowledge either textually or verbally. This article describes an alternative approach designed to evaluate HIV and AIDS knowledge among 587 adolescents in Mexico, where the number of official cases of AIDS has increased steadily since 1981. Participants stratified on sex and social class were required to draw modes of HIV transmission. The drawings were categorized into drawings of objects and persons, focusing on behaviors or cognitions, with a relational or contextual emphasis. The utility of this method for measuring knowledge about HIV infection and AIDS in education campaigns and evaluation research is discussed.

Acquired Immunodeficiency Syndrome↗

Communicating to promote justice in the modern health care system.

The systemic prejudices and biases that often limit the effectiveness of health care delivery are examined. How the inherent imbalance in control between consumers and providers of health care, based on the micropolitics of sharing relevant health information, perpetuates a system of marginalization and alienation within health care delivery systems is discussed. Communication barriers that often confront many stigmatized groups of health care consumers, such as the poor, people with AIDS, minorities, the ill elderly, and women, are identified. Such prejudicial treatment is framed within a cultural ideologies model, leading to identification of communication strategies for promoting justice in the modern health care system and enhancing the quality of health care delivery.

Aged↗

Users' experiences of heroin and methadone treatment.

The present study, conducted in 2003, Melbourne, Australia, examined and compared how different personal and social resources related to participants' use of both heroin and methadone, as well as their experiences of stigma and program regulation, and their evaluation of methadone treatment. In-depth interviews were conducted with 10 participants (five men, five women) aged between 25 and 42. Participants who had diverse personal and social circumstances were purposefully sought. Findings showed that users with "non-addict" or "functional" self-concepts had more resources and supportive social relationships that assisted them to develop realistic treatment expectations, avoid the stigma associated with methadone, and focus on the benefits of the treatment. Conversely, "conflicted" users with limited resources, few social connections, and negative self-concept saw methadone as an addiction, and as a highly stigmatizing and disempowering intervention. Social policies that differentiate users and address ways of improving users' personal and social resources are now needed.

Adult↗

Lifeworld perspectives on assistive devices: lived experiences of spouses of persons with stroke.

The purpose of this study was to explore how spouses of persons with a disability following stroke describe their lived experiences regarding assistive devices in everyday life. A phenomenological lifeworld approach was used and conversational interviews were conducted with 12 spouses. Their lived experiences of assistive devices were explored in relation to four lifeworld existentials intertwined in everyday life. The results showed that lived body concerns aspects of feelings, habits, and incorporation of the devices with one's own body. The devices are, from the spouses' perspective, a prerequisite for their partner with stroke living at home. Successively the devices are incorporated into the couples' homes, and they provide a new view of the environment, aspects related to lived space. The devices bring about a changed relation to lived time, related to past, present, and future. Further, lived human relation concerns changed relationships to husbands/wives with stroke, including a great responsibility due to the devices and their usage. The results also included stigmatizing aspects and a twofold relationship to health professionals regarding participation in decisions about prescribing assistive devices. Understanding the unique meaning of assistive devices from the spouses' perspective is vital for occupational therapists prescribing such devices.

Adult↗

Measuring health-related stigma--a literature review.

Stigma related to chronic health conditions such as HIV/AIDS, leprosy, tuberculosis, mental illness and epilepsy is a global phenomenon with a severe impact on individuals and their families, and on the effectiveness of public health programmes. To compare stigma measurement in different disciplines, a literature review was conducted. References were obtained through a search of literature databases and through examining relevant bibliographies. Sixty-three papers were selected that addressed the issue of measurement of stigma or related constructs and that contained a sample of the instrument or items used. Five unpublished studies were also included in the review. The aspects of health-related stigma used for assessment can be grouped in five categories. First, the experience of actual discrimination and/or participation restrictions on the part of the person affected; second, attitudes towards the people affected; third, perceived or felt stigma; fourth, self or internalized stigma; and fifth, discriminatory and stigmatizing practices in (health) services, legislation, media and educational materials. Within each of these areas, different research methods have been used, including questionnaires, qualitative methods, indicators and scales. The characteristics of the instruments considered most promising are described and compared. The purpose of stigma assessment is to increase our understanding of stigma and its determinants and dynamics, to determine its extent or severity in a given setting or target group and to monitor changes in stigma over time. The conclusions from this review are that (a) the consequences of stigma are remarkably similar in different health conditions, cultures and public health programmes; (b) many instruments have been developed to assess the intensity and qualities of stigma, but often these have been condition-specific; and (c) development of generic instruments to assess health-related stigma may be possible. To achieve this aim, existing instruments should be further validated, developed or adapted for generic use, where possible.

Chronic Disease↗