Psychometric Evaluation of the HIV Stigma Scale in a Swedish Context

Background HIV-related stigma has negative consequences for infected people's lives and is a barrier to HIV prevention. Therefore valid and reliable instruments to measure stigma are needed to enable mapping of HIV stigma. This study aimed to evaluate the psychometric properties of the HIV stigma scale in a Swedish context with regard to construct validity, data quality, and reliability. Methods The HIV stigma scale, developed by Berger, Ferrans, and Lashley (2001), was distributed to a cross-sectional sample of people living with HIV in Sweden (n = 194). The psychometric evaluation included exploratory factor analysis together with an analysis of the distribution of scores, convergent validity by correlations between the HIV stigma scale and measures of emotional well-being, and an analysis of missing items and floor and ceiling effects. Reliability was assessed using Cronbach's α. Results The exploratory factor analysis suggested a four-factor solution, similar to the original scale, with the dimensions personalised stigma, disclosure concerns, negative self-image, and concerns with public attitudes. One item had unacceptably low loadings and was excluded. Correlations between stigma dimensions and emotional well-being were all in the expected direction and ranged between −0.494 and −0.210. The instrument generated data of acceptable quality except for participants who had not disclosed their HIV status to anybody. In line with the original scale, all subscales demonstrated acceptable internal consistency with Cronbach's α 0.87–0.96. Conclusion A 39-item version of the HIV stigma scale used in a Swedish context showed satisfactory construct validity and reliability. Response alternatives are suggested to be slightly revised for items assuming the disclosure of diagnosis to another person. We recommend that people that have not disclosed should skip all questions belonging to the dimension personalised stigma. Our analysis confirmed construct validity of the instrument even without this dimension

Impact of HIV-related stigma on treatment adherence: systematic review and meta-synthesis

Introduction: Adherence to HIV antiretroviral therapy (ART) is a critical determinant of HIV-1 RNA viral suppression and health outcomes. It is generally accepted that HIV-related stigma is correlated with factors that may undermine ART adherence, but its relationship with ART adherence itself is not well established. We therefore undertook this review to systematically assess the relationship between HIV-related stigma and ART adherence. Methods: We searched nine electronic databases for published and unpublished literature, with no language restrictions. First we screened the titles and abstracts for studies that potentially contained data on ART adherence. Then we reviewed the full text of these studies to identify articles that reported data on the relationship between ART adherence and either HIV-related stigma or serostatus disclosure. We used the method of meta-synthesis to summarize the findings from the qualitative studies. Results: Our search protocol yielded 14,854 initial records. After eliminating duplicates and screening the titles and abstracts, we retrieved the full text of 960 journal articles, dissertations and unpublished conference abstracts for review. We included 75 studies conducted among 26,715 HIV-positive persons living in 32 countries worldwide, with less representation of work from Eastern Europe and Central Asia. Among the 34 qualitative studies, our meta-synthesis identified five distinct third-order labels through an inductive process that we categorized as themes and organized in a conceptual model spanning intrapersonal, interpersonal and structural levels. HIV-related stigma undermined ART adherence by compromising general psychological processes, such as adaptive coping and social support. We also identified psychological processes specific to HIV-positive persons driven by predominant stigmatizing attitudes and which undermined adherence, such as internalized stigma and concealment. Adaptive coping and social support were critical determinants of participants’ ability to overcome the structural and economic barriers associated with poverty in order to successfully adhere to ART. Among the 41 quantitative studies, 24 of 33 cross-sectional studies (71%) reported a positive finding between HIV stigma and ART non-adherence, while 6 of 7 longitudinal studies (86%) reported a null finding (Pearson's χ 2=7.7; p=0.005). Conclusions: We found that HIV-related stigma compromised participants’ abilities to successfully adhere to ART. Interventions to reduce stigma should target multiple levels of influence (intrapersonal, interpersonal and structural) in order to have maximum effectiveness on improving ART adherence

The accessibility and acceptability of self-management support interventions for men with long term conditions: a systematic review and meta-synthesis of qualitative studies

Background: Self-management support interventions can improve health outcomes, but their impact is limited by the numbers of people able or willing to access them. Men’s attendance at existing self-management support services appears suboptimal despite their increased risk of developing many of the most serious long term conditions. The aim of this review was to determine whether current self-management support interventions are acceptable and accessible to men with long term conditions, and explore what may act as facilitators and barriers to access of interventions and support activities. Methods: A systematic search for qualitative research was undertaken on CINAHL, EMBASE, MEDLINE, PsycINFO and Social Science Citation Index, in July 2013. Reference lists of relevant articles were also examined. Studies that used a qualitative design to explore men’s experiences of, or perceptions towards, self-management support for one or more long term condition were included. Studies which focused on experiences of living with a long term condition without consideration of self-management support were excluded. Thirty-eight studies met the inclusion criteria. A meta-ethnography approach was employed to synthesise the findings. Results: Four constructs associated with men’s experience of, and perceptions towards, self management support were identified: 1) need for purpose; 2) trusted environments; 3) value of peers; and 4) becoming an expert. The synthesis showed that men may feel less comfortable participating in self-management support if it is viewed as incongruous with valued aspects of their identity, particularly when activities are perceived to challenge masculine ideals associated with independence, stoicism, and control. Men may find self-management support more attractive when it is perceived as action-oriented, having a clear purpose, and offering personally meaningful information and practical strategies that can be integrated into daily life. Conclusions: Self-management support is most likely to be successful in engaging men when it is congruent with key aspects of their masculine identity. In order to overcome barriers to access and fully engage with interventions, some men may need self-management support interventions to be delivered in an environment that offers a sense of shared understanding, connectedness, and normality, and involves and/or is facilitated by men with a shared illness experience

Storytelling in Health Behavior Research: An Adolescent Health Risk Data Collection Conundrum

Storytelling is as old as humankind predating any other form of oral history. Instructional methodologies used by teachers include fables, parables, legends, myths, and real-life stories conveying important instructional cognition and affect. This paper briefly discusses the scientific foundations and use of storytelling for, effective instruction and shares a real-world story of conflict involving adolescent psychosocial and biological data collection, a principal investigator and a church youth director. A review of literature synthesized storytelling from a variety of scientific perspectives. This health behavior research story is framed via the essential elements of a story and told via the perspective of the principal investigator. Storytelling is effective at the higher levels of the cognitive and affective domains of Bloom & Krathwohl’s Taxonomy of Educational Objectives and rooted in neuroscience, psychology and educational psychology. Personal stories are a relevant strategy connecting learning material with situations outside the classroom. The human brain responds to hearing, reading or viewing a story, similar to real life processing as a genuine life experience. This story is anchored to NIH study protocol, a data collection incident at an African American church and a perplexed PI and research team. The problem-solving process and resolution of the story conflict are described. Implications for instruction in health behavior research, community-based participatory research and program evaluation are discussed. Overall, storytelling increases learner interest, and interaction, making content personally relevant and easier to remember. Storytelling is the bedrock of the learning process and the foundation of the teaching process and profession

Multiple Method Contraception Use among African American Adolescents in Four US Cities

We report on African American adolescents' (N = 850; M age = 15.4) contraceptive practices and type of contraception utilized during their last sexual encounter. Respondents completed measures of demographics, contraceptive use, sexual partner type, and ability to select “safe” sexual partners. 40% endorsed use of dual or multiple contraceptive methods; a total of 35 different contraceptive combinations were reported. Perceived ability to select “safe” partners was associated with not using contraception (OR = 1.25), using less effective contraceptive methods (OR = 1.23), or hormonal birth control (OR = 1.50). Female gender predicted hormonal birth control use (OR = 2.33), use of less effective contraceptive methods (e.g., withdrawal; OR = 2.47), and using no contraception (OR = 2.37). Respondents' age and partner type did not predict contraception use. Adolescents used contraceptive methods with limited ability to prevent both unintended pregnancies and STD/HIV. Adolescents who believed their partners posed low risk were more likely to use contraceptive practices other than condoms or no contraception. Reproductive health practitioners are encouraged to help youth negotiate contraceptive use with partners, regardless of the partner's perceived riskiness

Male Circumcision and HIV Prevention: Looking to the Future

Now that male circumcision has been shown to have a protective effect for men against HIV infection when engaging in vaginal intercourse with HIV-infected women, the research focus needs to shift towards the operational studies that can pave the way for effective implementation of circumcision programs. Behavioral research is needed to find out how people perceive the procedure and the barriers to and facilitators of uptake. It should also assess the risk of an increase in unsafe sex after circumcision. Social research must examine cultural perceptions of the practice, in Africa and beyond, including how likely uncircumcised communities are to access surgery and what messages are needed to persuade them. Advocates of male circumcision would benefit from research on how to influence health policy-makers, how best to communicate the benefits to the public, and how to design effective delivery models

Community, Family, and Partner-Related Stigma Experienced by Pregnant and Postpartum Women with HIV in Ho Chi Minh City, Vietnam

Pregnant and postpartum women with HIV often face stigma and discrimination at home and in the community. In Vietnam, associations between HIV and the “social evils” of drug use and sex work contribute to stigmatization of people with HIV. We conducted a qualitative study to explore discrimination experienced by HIV-positive pregnant and postpartum women in Ho Chi Minh City at home and in the community. We conducted 20 in-depth interviews and two focus group discussions. Participants described managing disclosure of their HIV infection because of fear of stigma and discrimination, particularly to the wider community. In cases where their HIV status was disclosed, women experienced both discrimination and support. The findings highlight the need for targeted interventions to support pregnant and postpartum women with HIV, particularly during this period when they are connected to the healthcare system and more readily available for counseling

“It is all about the fear of being discriminated [against]…the person suffering from HIV will not be accepted”: a qualitative study exploring the reasons for loss to follow-up among HIV-positive youth in Kisumu, Kenya

BACKGROUND: Youth represent 40% of all new HIV infections in the world, 80% of which live in sub-Saharan Africa. Youth living with HIV (YLWH) are more likely to become lost to follow-up (LTFU) from care compared to all other age groups. This study explored the reasons for LTFU among YLWH in Kenya. METHODS: Data was collected from: (1) Focus group Discussions (n = 18) with community health workers who work with LTFU youth. (2) Semi-structured interviews (n = 27) with HIV + youth (15–21 years old) that had not received HIV care for at least four months. (3) Semi-structured interviews (n = 10) with educators selected from schools attended by LTFU interview participants. Transcripts were coded and analyzed employing grounded theory. RESULTS: HIV-related stigma was the overarching factor that led to LTFU among HIV + youth. Stigma operated on multiple levels to influence LTFU, including in the home/family, at school, and at the clinic. In all three settings, participants’ fear of stigma due to disclosure of their HIV status contributed to LTFU. Likewise, in the three settings, the dependent relationships between youth and the key adult figures in their lives were also adversely impacted by stigma and resultant lack of disclosure. Thus, at all three settings stigma influenced fear of disclosure, which in turn impacted negatively on dependent relationships with adults on whom they rely (i.e. parents, teachers and clinicians) leading to LTFU. CONCLUSIONS: Interventions focusing on reduction of stigma, increasing safe disclosure of HIV status, and improved dependent relationships may improve retention in care of YLWH

Characteristics of Sexual Abuse in Childhood and Adolescence Influence Sexual Risk Behavior in Adulthood

Childhood and adolescent sexual abuse has been associated with subsequent (adult) sexual risk behavior, but the effects of force and type of sexual abuse on sexual behavior outcomes have been less well-studied. The present study investigated the associations between sexual abuse characteristics and later sexual risk behavior, and explored whether gender of the child/adolescent moderated these relations. Patients attending an STD clinic completed a computerized survey that assessed history of sexual abuse as well as lifetime and current sexual behavior. Participants were considered sexually abused if they reported a sexual experience (1) before age 13 with someone 5 or more years older, (2) between the ages of 13 and 16 with someone 10 or more years older, or (3) before the age of 17 involving force or coercion. Participants who were sexually abused were further categorized based on two abuse characteristics, namely, use of penetration and force. Analyses included 1177 participants (n=534 women; n=643 men). Those who reported sexual abuse involving penetration and/or force reported more adult sexual risk behavior, including the number of lifetime partners and number of previous STD diagnoses, than those who were not sexually abused and those who were abused without force or penetration. There were no significant differences in sexual risk behavior between nonabused participants and those who reported sexual abuse without force and without penetration. Gender of the child/adolescent moderated the association between sexual abuse characteristics and adult sexual risk behavior; for men, sexual abuse with force and penetration was associated with the greatest number of episodes of sex trading, whereas for women, those who were abused with penetration, regardless of whether the abuse involved force, reported the most episodes of sex trading. These findings indicate that more severe sexual abuse is associated with riskier adult sexual behavior