Health-related quality of life among people living with hiv disease in small communities and rural areas

Abstract

While many studies have examined the life quality of HIV-infected persons in large metropolitan areas, few studies have investigated quality of life issues among persons living with HIV disease in America's small and rural communities. In the present study, 78 people living with HIV/AIDS in small and rural communities (i.e., populations <25,000) reported on their health-related quality of life. Many respondents reported decreased social, emotional, functional, and physical well-being. Results revealed that participants' emotional well-being and the quality of their relationship with their doctor were related to their overall quality of life. The majority of participants (73%) expressed interest in participating in a telephone-linked support group involving other people living with HIV designed to improve quality of life.     

Correlates of spirituality and well-being in a community sample of people living with HIV disease

While the past several years have witnessed an increase in the amount of research examining the spiritual perspectives of people living with HIV/AIDS, this literature is still insufficient to guide the conceptualization and development of spiritually based interventions to improve the life quality of people living with HIV illness. The present study assessed a community sample of 275 persons living with HIV disease to examine relationships among their spirituality, quality of life, perceptions of social support, and coping and adjustment efforts. This study found relationships between social support, active problem solving, life satisfaction, and gender and race with higher levels of spirituality among people living with HIV/AIDS. Mental health providers may need to routinely include assessments of spirituality and religious practices. Caregivers, faith communities, and mental health providers will need to assist in developing supportive environments that enhance the spiritual life and social well-being of people living with HIV infection. Additionally, caregiver training programs will need to focus on spiritual practices as a means of establishing a support system that increases the psychosocial well-being of people living with HIV/AIDS.     

Understanding the impact of HIV diagnosis amongst gay men in Scotland: An interpretative phenomenological analysis

Objectives: Although a wide literature details the psychological impact of human immunodeficiency virus (HIV) diagnosis, it predates the introduction of effective treatment for HIV (i.e. anti-retroviral therapies, ARTs). This article explores the psychological impact of HIV diagnosis in post-ART accounts. This is important, given the recent policy developments which focus upon increasing HIV testing and thus diagnoses.

Design: This study presents a qualitative exploration of the experiential accounts of HIV-positive gay men living in Scotland. A total of 14 HIV-positive gay men took part in open-ended interviews.

Methods: Interpretative phenomenological analysis was employed to identify recurrent themes across the interviews.

Results: Our analysis focuses upon the participants’ struggles in adjusting to their HIV status. Diagnosis was a deeply shocking and unexpected experience. Stigma and fear of prejudice dominated their accounts. HIV was understood, variously, as a shameful, fatal and life-changing condition. Overall, within these accounts there was little sense of HIV normalisation.

Conclusions: In Scotland, where HIV prevalence is low, and where no accessible HIV-positive sub-culture exists, there is on-going psychological distress and morbidity amongst gay men testing HIV positive. As HIV-related policy increasingly focuses on increasing rates of antibody testing, there is a need to reduce the psychosocial costs associated with HIV-positive diagnoses.     

L’appropriation de l’espace chez les personnes âgées dépendantes résidants en EHPAD

IntroductionThe present study focuses on space acquisition process in dependant elderly people living in institution.ObjectiveOur aim was to assess the role of the type of space and level of control on the quality of life in dependant elderly people living in institution.MethodThree variables were examined. The type of space (private versus collective, evaluated with two scales), the level of control (Levenson's IPC and EHIPA) and the quality of life (SF-36 and Geriatric Depression Scale). Our sample consisted of 30 elderly people living in institution.ResultsOur results showed that: (1) subjects appropriate more the private space than the collective space; (2) the level of control influences the acquisition process of collective space but not private space; and (3) the more subjects appropriate the collective space, the better is their quality of life.ConclusionThe results propose that potential applications should be developed in institution.     

Identifying Training Needs of Health-Care Providers Related to Treatment and Care of Transgendered Patients: A Qualitative Needs Assessment Conducted in New England

SUMMARY

The Transgender Training Project of the New England AIDS Education and Training Center has been providing training on transgender-related issues to health-care providers in the New England region since 1999, having trained nearly 600 providers in that time. The Transgender Training Project embarked on a study during the 2001–2002 grant year to interview providers of HIV-related care and advocacy on their knowledge and experience with working with trans-gendered people and to assess training needs to increase their effectiveness with transgendered clients.

The methodology consisted of face-to-face interviews with 13 providers of HIV treatment and care who are affiliated with the New England AIDS Education and Training Center network to discuss clinical challenges in working with transgendered people.

In this exploratory study, we found that providers had:

1. Desire to treat transgendered patients respectfully but admitted discomfort and lack of tools for specific interviewing/assessments.

2. Experience with a range of transgendered patients, but lack of information on distinctions among transgendered experiences.

3. Restrictions based on time constraints that create an overarching barrier in building trusting relationships with clients, and trusting relationships are integral to quality care.

4. Concern and frustration with lack of information, studies and research.

5. Concern and frustration with lack of treatment guidelines, (or ability to access them), referral contacts and ways to advocate for transgender clients.

6. Belief that training by transgendered people themselves was an essential teaching element.

These results point to the need for the development and dissemination of specific training materials and resources for health-care providers serving transgendered people living with or at risk for HIV.     

Gender as an Obstacle in HIV/AIDS Prevention: Considerations for the Development of HIV/AIDS Prevention Efforts for Male-to-Female Transgenders

SUMMARY

Social discourses regarding gender are responsible for molding people's cognitions, perceptions, behaviors, and interactions with others. Approaching and understanding gender socialization is an important strategy that must be included in the development of HIV/AIDS prevention intervention efforts targeting male-to-female (MTF) transgender people.

This paper represents an effort to identify the influence of gender construction among a group of MTF transgenders in Puerto Rico. Using combined methodology, authors examined results from a questionnaire and in-depth interviews with a convenience sample of MTF transgenders living in the San Juan metropolitan area.

Quantitative analysis demonstrated that this sample is composed of young, unemployed, and undereducated population. Many participated in the sex industry. Participants reported need for basic health and social services and alienation from social networks. Qualitative analysis confirmed their traditional social construction of the “feminine.” Their discourse underlines their need to reinforce their identity by the construction of a female self which undermines their possibilities for negotiating safer sex, as happens to most females in Latino societies.

Social vulnerability, institutional exclusion, and gender construction issues are obstacles for the HIV prevention efforts among these communities.     

Couples of Mixed HIV Status

Abstract

As individuals with HIV are living longer due to earlier diagnosis and advances in treatment, they are turning their attention to living with HIV/AIDS. Based on a study (n = 82) that explored how HIV may affect the intimacy of long-term couples of mixed HIV status, psychosocial issues are identified. Key findings include the identification of six themes. They are: (1) fear of HIV transmission, (2) HIV and health status, (3) shifts in emotional intimacy, (4) assumption of care-giver and patient roles, (5) reproductive issues, and (6) a perceived sense of power inequity present between the genders and between HIV positive and HIV negative partners. Implications for the practitioner are discussed.     

Guidance for professionals in health promotion: Keeping it simple–but not too simple

Abstract

People with haemophilia have been infected by HIV through blood products required for the treatment of their bleeds. In a recent study in Scotland their knowledge of HIV/AIDS and their behavioural changes were explored. It was found that people with severe haemophilia were better informed about HIV and AIDS than the mildly/moderately affected, bur only the knowledge of precautions in mildly/moderately affected patients was positively associated with their change of sexual practices. Mildly/moderately affected patients, who were less at risk of contracting HIV, reduced their treatment more than the severely affected patients. Only one third of patients applied safe-sex practices and a greater proportion of those who did not were single men, some of them HIV antibody positive.     

Perceived responsibility for disease onset affects HIV/AIDS Education

Abstract

Ninety-nine participants were assigned to one of three experimental conditions in which they viewed an AIDS education videotape that systematically manipulated whether or not the educator would be perceived as responsible for HIV infection. Participants were administered pre and post-video affect measures, and an HlV/AIDS knowledge test after watching the video. Participants who viewed the speaker who acquired HIV through a blood transfusion (perceived not responsible) and those who viewed the speaker who did not reveal mode of acquisition (control) performed significantly better on the knowledge test compared to those who viewed the speaker who acquired HIV through unprotected sexual inttrcourse (perceived responsible). In addition. male participants in the perceived responsible condition reported a significant increase in sensation-sceking after viewing the video. Finally, females experienced a significantly greater increase in anxiety as a result of seeing the video than did males. Implications of these tindings for the design and implmentation of AIDS education programs were discussed.     

Working class homosexuality and HIV/AIDS prevention some recent research from Sydney,Australia

Abstract

Surveys on gay and bisexual men in Sydney and non-metropolitan New South Wales (NSW) indicate uneven patterns of HIV/AIDS knowledge and sexual behaviour change. As a follow-up action-research study, the Class, Homosexuality and AIDS Prevention (CHAP) project pursued audio-recorded, semistructured interviews with men in western Sydney and Nullangardie, a provincial city in NSW, to investigate the relationship between homosexuality and class.

One-to-one interviews with working-class, homosexually active men revealed particular patterns of homosexual initiation and sexual relationships, and a distinct culture being slowly affected by notions of being “gay” and “gay community”. This impact of modern gay life on western Sydney was different from that in the provincial city. More prominent were the effects of class—unemployment, poor education, poverty, and cultural marginalisation—on the experience and elaboration of homosexuality. Group interviews confirmed an experience of “difference” from prominent gay communities, especially Sydney's “Oxford Street” gay quarter. Working-class men offered a critique of gay community-initiated HIV/AIDS prevention strategies, pointing toward different education initiatives involving local social networks.

Case studies are presented to argue the importance of the relation between sexuality and class, and its consequences for HIV/AIDS education.     

Mental health and quality of life in non-binary transgender adults: a case control study

Abstract

Background: The social challenges that non-binary people experience, due in part to social intolerance and the lack of validation of non-binary gender identities, may affect the mental health and quality of life of this population. However, studies that have distinguished between non-binary and binary transgender identities are lacking.

Aim: To compare the mental health and quality of life of a community sample of non-binary transgender adults with controls (binary transgender people and cisgender people) matched on sex assigned at birth.

Method: A total of 526 participants were included. Ninety-seven were classified as non-binary and were compared with two control groups: 91 people classified as binary and 338 cisgender people. Only transgender people not on gender affirming hormone treatment or who had not undergone gender affirming surgery were included. Participants were invited to complete an online survey that included mental health and quality of life measures.

Results: Non-binary people reported significantly better mental health than binary transgender people, but worse than cisgender people. Overall, there were no significant differences in quality of life between non-binary and binary transgender participants assigned male at birth and transgender females, but non-binary assigned males at birth had better scores on the psychological and social domains of quality of life than transgender males. Quality of life was better across all domains in cisgender people than transgender groups.

Conclusion: There is an inequality with regard to mental health and quality of life between non-binary (and binary) transgender people and the cisgender population that needs to be addressed. The better mental health scores in non-binary people may reflect lower levels of body dissatisfaction among the non-binary population. Mental health problems and poor quality of life are likely to have social causes and hence legislative measures and broader government-led inclusive directives should be put in place to recognize and to validate non-binary identifying people.     

Formal Employment and Health-Related Quality of Life among People Living with HIV in South Africa

This study examined the link between formal employment and characteristics of the workplace (especially awareness of workplace HIV policies and HIV status disclosure to work colleagues) and health-related quality of life (HRQoL) among people living with HIV (PLHIV). The study analysed medical treatment and employment history since first being diagnosed as HIV-positive among 554 adults, 55 % females, who had been on HIV treatment for at least 2 years in South Africa. Additional cross-sectional data on HRQoL were collected using the Medical Outcomes Study 36-Item Short Form (SF-36) (QualityMetric Incorporated). Two hundred and forty four (44 %) of the study participants (39 % and 49 % among males and females, respectively) were formally employed at the study interview. Formally employed study participants reported higher HRQoL than those not formally employed, as reflected in mean scores in the physical and mental component summaries of the SF-36 instrument. HRQoL was unrelated to study participants’ CD4 count, viral load and duration since HIV diagnosis. Among the formally employed study participants, 27.9 % reported awareness of workplace HIV policies in their organisations, while 50.8 % said they had disclosed their HIV status to work colleagues. The awareness of workplace HIV policies was associated with higher mental component summary scores after controlling for study participants’ socio-demographic characteristics, but had no significant association with the physical component summary scores. The disclosure of HIV status to work colleagues was associated with neither mental nor physical component summary scores. The finding of a positive association between formal employment and HRQoL among PLHIV suggest the need for facilitative interventions for employment entry and continuation among PLHIV for their wellbeing.     

Medication beliefs and structural barriers to treatment adherence among people living with HIV infection

Background: People living in poverty face multiple structural challenges to medication adherence including lack of transportation, inadequate housing and food insecurity. The degree to which individuals’ motivations to remain adherent may overcome structural barriers has received limited attention.

Purpose: To examine whether medication necessity and concerns beliefs predict antiretroviral therapy (ART) adherence over and above structural adherence barriers associated with poverty.

Methods: People living with HIV in a southern US city (N = 942) completed computerised interviews, an objective measure of adherence and HIV viral suppression obtained from medical records. Hierarchical logistic regression models were constructed to examine demographic and illness characteristics, structural barriers, mental health, substance use and medication necessity and concerns beliefs as predictors of ART adherence.

Results: In multivariable models, current drug use and medication necessity and concerns beliefs predicted treatment adherence over and above demographic, health, mental health and structural factors.

Conclusions: Medication beliefs are proximal and powerful motivating factors that predict adherence. Adherence interventions should directly address medication beliefs in developing strategies to manage barriers facing people with HIV living in poverty.     

Using circular questions to explore individual family member experiences of youth gender dysphoria in Australia

Abstract

Background: The number of young people reporting gender dysphoria is increasing worldwide, with gender dysphoria known to affect everyone in the family in unique ways. Previous research has highlighted the importance of family support and understanding; however, much less is known about individual and collective family member experiences, particularly for siblings under the age of 18?years.

Aims: This study sought to identify, describe and interpret individual family member experiences of youth gender dysphoria using semi-structured interviews, incorporating circular questioning, within a whole of family, clinical and wider social context.

Methods: Thirty-five individual family members living in Australia (nine young people aged 12-17?years experiencing gender dysphoria, 10 mothers, eight fathers, and eight siblings aged 11-17?years) were interviewed, exploring positive and negative experiences of youth gender dysphoria, within and outside of the family. Family relationships, support and healthcare experiences were also explored.

Results: All participants reported a mixture of positive and negative experiences of youth gender dysphoria. Levels of acceptance tended to change with the duration of transition, with most family members adapting with time. Siblings reported mixed experiences within the same family, with some struggling to adapt. Most family members felt that including the whole family in the healthcare of the young person was important, although dependent on individual circumstances and family context. Specialist gender care experiences were unanimously positive, although services were considered difficult to access.

Discussion: Family members reported shared and individual positive and negative experiences of youth gender dysphoria across social contexts. Accepting and facilitating gender transition for young people appeared to improve individual and family functioning. Most participants valued a whole of family approach within specialist healthcare. The use of circular questioning in the study helped dispel assumptions and facilitated curiosity for others’ experiences in the family.     

A Needs Assessment of Transgendered People of Color Living in Washington,DC

SUMMARY

A needs assessment (N = 248) conducted in Washington, DC, revealed that trans-gendered people of color are at high risk for HIV/AIDS, substance abuse, suicide and violence/crime victimization. Overall HIV prevalence was 25%, with 32% in natal males (MTFs, i.e., male-to-females). Four predictors for HIV positive status were identified through logistic regression-male sex at birth, a history of substance abuse, sexual assault, and unemployment. Substance abuse was found in nearly half the sample (48%) but only half of those (51%) had sought treatment for it. Thirty-eight percent reported experiencing suicidal ideation, with 63% of those attributing it to their gender issues. Of those with suicidal ideation, nearly half (49%, or 16% of the entire sample), went on to make attempt(s) to kill themselves. Forty-three percent had been victims of violence or crime, including 13% who had been sexually assaulted.

Knowledge of the Standards of Care of the Harry Benjamin International Gender Dysphoria Association was quite low (9%) and associated with white race, any higher education beyond high school, and access to sex reassignment surgery (SRS). Access to SRS, defined as obtaining vaginoplasties for natal males and chest surgeries for natal females, was just 4%. White race (versus all other races, p < .001) and female at birth (versus male, p < .01) were significantly associated with access to SRS.

Use of hormones at some point during their lives was reported by 51% of participants. Thirty-five percent were currently taking hormones, with 72% acquiring their hormones from friends or on the street. Among natal males, 25% had injected silicone.

Nineteen percent did not have their own living space, and employment, housing and job training were the most commonly-reported immediate needs of the sample. The results of this needs assessment provide evidence of an urgent need for increased medical and social services specific to transgendered people of color living in the District of Columbia.     

Individual attitudes and perceived social norms: Reports on HIV/AIDS‐related stigma among service providers in China

This study examined HIV/AIDS‐related stigma among Chinese service providers by comparing their personal attitudes toward people living with HIV/AIDS with their perception of social norms related to people living with HIV/AIDS. We randomly selected three provincial hospitals, four city/prefecture hospitals, 10 county hospitals, 18 township health clinics, and 54 village clinics from Yunnan, China. Doctors and nurses were randomly sampled proportionally to the doctor–nurse ratio of each hospital or clinic. Lab technicians were over‐sampled in order to include an adequate representation in the analysis. A total of 1,101 service providers participated in a voluntary, anonymous survey where demographic characteristics, individual attitude and perceived social norms toward people living with HIV/AIDS, discrimination intent at work, general prejudicial attitude and knowledge on HIV/AIDS were measured. A majority of the sample demonstrated a similarity between their personal views and what they thought most people in society believe. Multiple logistic regressions revealed that participants who were younger or reported personal contact with people living with HIV/AIDS were significantly more likely to report personal attitudes toward the population that were more liberal than their perceived social norms. Holding a more liberal personal attitude toward people living with HIV/AIDS than perceived social norms was significantly and negatively related to the level of discrimination intent at work, perceived discrimination at interpersonal level and the level of general prejudicial attitude toward people living with HIV/AIDS. Results underscored the importance of understanding social norms and personal attitudes in studying HIV‐related stigma and called for the incorporation of existing human capital into future HIV stigma reduction programs.     

Psychological factors in hiv testing among sexually transmitted disease clinic patients: An exploratory study

Abstract

Substantial numbers of persons at risk for HIV infection do not seek HIV testing and factors influencing testing decisions are not well understood. To identify psychological characteristics of persons who remain unwilling to receive HIV testing, we surveyed patients of an inner-city sexually transmitted disease (STD) clinic (n = 181). Participants completed an anonymous survey and were grouped on the basis of HIV testing history and compared on measures of testing perceptions, attitudes, and decision making influences. Results showed that untested participants feared testing and had a sense of not knowing if they needed to be tested. In contrast, participants who were getting tested believed that testing would help them feel better about their health. Results also showed that participants lacked accurate information about some HIV testing procedures. We conclude that identifying concerns which inhibit seeking HIV testing can be useful in developing effective methods of promoting HIV testing.     

the relationship between pain and coping styles among hiv-positive men and women

Abstract

Pain in HIV/AIDS patients is associated with compromised quality of life and emotional adjustment. Although previous findings support a relationship between coping styles and subjective pain for various groups of chronically-ill persons, little research has examined the associations between coping and pain in HIV-positive or AIDS patients. The purpose of this study was to explore the relationship between pain and coping styles among 105 HIV-positive participants (32 women and 73 men) in a randomized clinical trial designed to examine the effect of group psychotherapy on quality of life and health behavior. Participants completed the Brief COPE, the pain scale from the Medical Outcomes Study-HIV, and a demographic and medical questionnaire. Multiple regression analysis, with pain as the dependent variable, showed that participants who reported coping through denial reported greater pain severity (p < 0.0001). These results suggest that denial as a coping strategy appears to be signficantly associated with pain for persons with HIV/AIDS. However, further research is necessary to determine the causal relationship between pain and coping through denial. These findings also point to the possibility of psychological intervention in order to modify maladaptive coping styles and to ameliorate pain in this population.