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PubMed1999

Ethical considerations in qualitative research with vulnerable groups: exploring lesbians' and gay men's experiences of health care--a personal perspective.

It is rare to find honest accounts of the difficulties and dilemmas encountered when conducting sensitive research with vulnerable research populations. This account explores some of the ethical issues raised by a qualitative interview study with lesbians and gay men about their experiences of nursing care. There is tension between the moral duty to conduct research with vulnerable and stigmatized groups in order to improve care, and the inevitable lack of resources that go with such a venture. This increases the risk of harm during the process of research. The risk of harm to both the researchers and the researched is explored and the need for a support structure for both groups is raised. There is a pressing need to develop further understanding about the ways in which the dissemination of research can potentially harm already vulnerable research populations.

Attitude to Health↗
PubMed2005

Quality of life and living with HIV/AIDS in Cambodia.

UNLABELLED: This qualitative study was DESIGN: ability to maintain life functioning, describing QoL before getting sick and current hardships; isolation and the desire for connection with others, describing how perceived stigmatization, discrimination, and alienation affect QoL; anticipating the future, describing fears about future QoL; and reflection, describing the effect of vulnerable relationships and regrets on QoL. For the participants of this study, secrets and silence, selective disclosure, living in the present, and hopefulness were means of promoting achievement of QoL outcomes of being able to meet basic needs, having a sense of belonging, and having a safe and caring connection with others.

Activities of Daily Living↗
PubMed2005

Providing care and facing death: nursing during Ebola outbreaks in central Africa.

Few studies have focused on describing the experiences of health care workers during rapid killing epidemics. In this article, the views and experiences of nurses during three outbreaks of Ebola hemorrhagic fever (EHF) in Central Africa are examined. These three outbreaks occurred in Kikwit, Democratic Republic of Congo (DRC, 1995); Gulu, Uganda (2000-2001); and Republic of Congo (ROC, 2003). Open-ended and semistructured interviews with individuals and small groups were conducted during the outbreaks in Uganda and ROC; data from DRC are extracted from published sources. Three key themes emerged from the interviews: (a) lack of protective gear, basic equipment, and other resources necessary to provide care, especially during the early phases of the outbreaks; (b) stigmatization by family, coworkers, and community; and (c) exceptional commitment to the nursing profession in a context where the lives of the health care workers were in jeopardy.

Altruism↗
PubMed2002

The social construction of sexually transmitted infections (STIs) in South African communities.

Since the medical link between sexually transmitted infections (STIs) and HIV/AIDS was established, there has been an increased focus on the spread of STIs in South Africa. The aim of this study was to provide an in-depth picture of the dynamics involved in sexuality and the spread of STIs and HIV/AIDS. The authors present the findings of a focus group study, which was a part of a larger, national project addressing the broad question of health-care seeking behavior for STIs. A discourse analysis carried out on 10 focus groups reveals complex and rich narratives on the way in which STIs are constructed in South African communities. The dominant discourses focused on the continuing stigmatization of STIs, causal explanations, and prevention strategies. The analysis raises important recommendations for both educational interventions and health services toward the challenge of halting the spread of STIs and HIV/AIDS.

Attitude to Health↗
PubMed2004

Perception of tuberculosis in the Democratic Republic of Congo: wali ya nkumu in the Mai Ndombe district.

To implement effective tuberculosis (TB) control programs, we must first understand the health culture in a given region. The authors organized eight focus group sessions in the Mai Ndombe district in the Democratic Republic of Congo to study the underlying attitudes toward TB and to describe the TB context with special reference to gender differences. They then analyzed the focus group data using a grounded theory design. TB is called "the disease of distance" and is described as a person invading people. Isolation and stigmatization are the methods being used to protect society from the TB threat. The authors observed no gender differences in the collected data.

Adult↗
PubMed2004

Strategies used by low-income Mexican women to deal with miscarriage and "spontaneous" abortion.

This study focuses on lowest income Mexican women attended for abortion-related complications in a public hospital. The objective was to investigate the women's experience of having a so-called "spontaneous" abortion and their related strategies to avoid stigmatization. Four strategies emerge from women's testimonies: presenting themselves as women who "play by the rules," pleading ignorance of the pregnancy, stating that they had already accepted their pregnancy, or presenting the abortion as the result of an accident. Women use these strategies to deflect any blame to which they might be subjected and as a means of dealing with the stigma attached to a behavior that transgresses social norms regarding reproduction. Far from being passive receptors of the social imperative, which makes motherhood compulsory, women oscillate strategically within the margins of a seemingly uniform normative discourse and thereby ensure their moral survival. The authors discuss results within the framework of praxis theory.

Abortion, Induced↗
PubMed2005

Community-academic research on hard-to-reach populations: benefits and challenges.

In this article, the authors examine some of the benefits and challenges associated with conducting research on hard-to-reach/hidden populations: in this instance, sex workers. The population studied was female and male sex workers working in different sectors of the sex industry in a medium-size Canadian metropolitan area. The authors describe the need for close community-academic cooperation, given the hidden and highly stigmatized nature of the target population that was investigated and the local context in which the research project was embedded. The authors discuss the main benefits and challenges of the research collaboration for the various parties involved, including the community partner organization, indigenous research assistants, and academic research team. They conclude with a discussion of strategies to help overcome the main challenges faced during the research endeavor.

Adult↗
PubMed2006

Men's voices: postnatal depression from the perspective of male partners.

Postnatal depression (PND) is a serious and debilitating condition that is recognized as being disruptive to women's lives at a time when they are already under stress adapting to the demands that a new baby creates. What has not always been fully acknowledged is that PND is linked with elevated levels of depression in male partners. In this article, the authors report on men's experiences of PND and of participation in a 6-week group treatment program specifically designed for male partners. The men experienced their partners' PND as overwhelming, isolating, stigmatizing, and frustrating. Coping with PND was assisted by participation in the men's group. Men reported lowered levels of depression and stress, and higher levels of social support, as a result of their participation. The men valued highly the opportunity to share experiences with peers, to hear strategies for engaging in their relationship, and to gain factual information.

Adult↗
PubMed2006

Managing shame and stigma: case studies of female carers of people with AIDS in southern Thailand.

The authors of this article discuss the effects of shame and stigma on female caregivers of people living with AIDS in southern Thailand. They conducted a longitudinal ethnographic case study over 8 months and collected data using interviews, observations, field notes, and journaling. The authors performed qualitative content analysis and narrative analysis. Public judgment was created in a moral climate, framed by Buddhist precepts of correct and honorable behavior, with different levels of tolerance and stigmatization between men and women. Women caregivers engaged in concealing practices, deception, and withdrawal from social relationships to manage the effects of shame and stigma.

Acquired Immunodeficiency Syndrome↗
PubMed2007

Key informants' perspectives prior to beginning a cervical cancer study in Ohio Appalachia.

Higher-than-average cervical cancer incidence and mortality rates occur in Ohio Appalachia. Little is known, however, about societal norms and social determinants that affect these rates. To examine county-level sociocultural environments to plan a cervical cancer prevention program, the authors interviewed key informants from 17 of 29 Ohio Appalachia counties. Findings include the perceived offensiveness of the term Appalachia, the importance of long-standing family ties, urban and rural areas within counties, use and acceptability of tobacco, the view that cancer is a death sentence, and the stigmatization of people with cancer. Barriers to screening included cost, lack of insurance, transportation problems, fear, embarrassment, and privacy issues. These findings highlight the important role of geography, social environment, and culture on health behaviors and health outcomes. The interviews provided information about the unique characteristics of this population that are important when developing effective strategies to address cancer-related health behaviors in this medically underserved population.

Community Health Services↗
PubMed2007

Children's attitudes toward people with AIDS in Puerto Rico: exploring stigma through drawings and stories.

AIDS stigma refers to prejudice and discrimination directed at people or groups perceived to have HIV/AIDS (Herek, 1999). Although AIDS stigma has been found in adolescent and adult populations, few researchers have explored it among children. Misconceptions about people with AIDS (PWA) might lead to negative attitudes toward PWA and obstruct HIV prevention efforts. The authors assessed 110 Puerto Rican children's attitudes toward PWA using drawings (n=65) and stories (n=45). Although participants held stigmatizing attitudes toward PWA across both methods, the approaches captured different beliefs and attitudes. Drawings depicted PWA as physically deteriorated and performing socially condemned behaviors, whereas stories describing PWA highlighted children's fear of contagion and death. Stigma toward PWA was more pronounced than toward other illnesses (e.g., cancer). The study highlights the importance of assessing children's attitudes through creative data collection procedures.

Acquired Immunodeficiency Syndrome↗
PubMed1993

The impact of HIV-positive diagnosis on the individual, Part 1: Stigma, rejection, and loneliness.

The growing incidence of HIV infection and AIDS has generated panic, fear, anxiety, and negative attitudes among the general public. As an illness, HIV infection and AIDS have become the new sources of stigma. This article explores the stigma, rejection, and loneliness of 25 individuals with known HIV-infection/AIDS, who were interviewed using a set of open-ended questions. The results indicated that the HIV-positive diagnosis had a profound impact on the individual's psychosocial aspects of life, particularly interactions with others. Most of those infected by the virus were lonely, had to cope with stigmatization, and suffered disruption of family and peer relationships. They were confronted with prolonged uncertainty about their lives and experienced intense, constant fear of disclosure of their illness and of being rejected by society, yet they were not always able to discuss these fears and anxieties openly with friends or family.

Acquired Immunodeficiency Syndrome↗
PubMedDate not supplied

Stigma and HIV: does the social response affect the natural course of the epidemic?

This article will review the theory of stigma and discuss its historical background. It will examine social responses to previously stigmatized veneral diseases and compare these responses with social responses to HIV. An analysis will be done using McGrath's (1992) theoretical measures to determine the affects of the social response of stigma on the infectious disease of HIV.

Adaptation, Psychological↗
PubMed2003

Promoting culturally competent care for gay youth.

Gay youth and those questioning their sexual identity have been referred to as "hidden," "invisible," "stigmatized," and "marginalized." As a result, the unique safety and health needs of this subculture have been overlooked, or worse, ignored, placing these youth at risk. Because school nurses have been identifying at-risk populations of students and developing programs to promote youth and family health for years, they should be prepared to provide health care for the subculture of gay youth. However, nurses are saying they do not have the knowledge or skills needed to identify and address the needs of this group. Providing school nursing care for gay youth requires the school nurse to be culturally competent. School nurses need to be aware of, sensitive to, and knowledgeable about the subculture. They must also possess communication skills required to relate appropriately to this group. This article presents information and nursing strategies that will promote the safety and health of gay youth while enhancing the school nurse's cultural competence.

Adolescent↗
PubMed2005

Paper and voice MAYSI-2: format comparability and concordance with the voice DISC-IV.

The authors examine the comparability of paper and voice formats of the Massachusetts Youth Screening Instrument-Second Version (MAYSI-2) as well as each format's concordance with the Voice Diagnostic Interview Schedule for Children (DISC) among adjudicated youth. Comparability is assessed among 248 youths admitted to a South Carolina Assessment Center. Mean scores and alpha coefficients are calculated, and area under the curve and positive and negative predictive values are used to compare concordance to the DISC. Paper and voice formats are significantly correlated, have similar alpha coefficients, and have comparable concordance with the DISC, suggesting that the MAYSI-2 paper and voice formats are comparable instruments. The voice format may be preferable to the paper format for screening justice youth for mental health problems because it may reduce incomplete data and increase reporting of stigmatized behaviors and because of its ability to automatically generate scored reports and aggregate data.

Adolescent↗
PubMed2005

No resting place: African American women at the crossroads of violence.

Seeking safe places after leaving abusive relationships is often an intricate process for African American women. Survivor-victims of gender violence frequently experience ongoing trauma because of race, ethnicity, class, sexual orientation, and other stigmatizing social identities. All too often, women of color must handle leaving the gender violence simultaneously with the ongoing threat of cultural violence. The intersection of gender and cultural violence (e.g., racism, discrimination) complicate African American women's ability to obtain and sustain safe environments. These intersections are critical crossroads in African American women's lives. The results of this womanist and Black feminist study are presented in an alternative way to highlight the primacy of respondents' voices. In addition, suggestions to inform the practice of research with African American women are included.

Adult↗
PubMed2003

Cancer narratives and the cancer support group.

We conceptualize the experience of cancer as requiring 'biographical work' and examine the nature of this work in the context of peer support groups. Interviews with participants and leaders of support groups were used to theorize the importance of support to cancer patients with varying stages and length of disease. Patient interviews led us to describe the process of joining, belonging, and identifying with, support groups as an important process within patients' ongoing biographical work and encompassing a search for a 'separate social space'. We discuss the implications for understanding the stigmatizing nature of cancer and the 'civic life' these groups support.

Adult↗
PubMed2004

Discursive practices and democratic participation: negotiating language use in mental health services.

Collective health refers to a field of knowledge that was developed in Latin America in the 1970s. In Brazil, it has been intrinsically related to the creation of the Unified Health System. One of the key notions in this new health system is integrality of care: the development of responses that are sensitive to the health needs of the population. This study takes integrality as its context and explores the meaning of mental suffering for users of mental health services. Three aspects are discussed: the population's lack of knowledge about what is offered; the difficulty in translating 'mental suffering' into a language understood by health care professionals; and the tendency to deny this suffering because of the fear of stigmatization.

Brazil↗