The role of patient and public involvement in oral health and HIV/AIDS research, practice and policy.

Patient and public involvement (PPI) is a process whereby patients, caregivers, service users and other relevant stakeholders, including the general public, are actively involved and engaged in activities to develop research. The dental research agenda has traditionally been driven by clinicians, where patients and the public have participated in research as subjects; patient and public involvement can contribute to the research agenda including the design and conduct of research by providing unique perspectives gained through lived experience. This panel of the 8th World Workshop on Oral Health and Diseases in AIDS considered the role of people living with HIV (PLHIV) to contribute to oral health and HIV research and policy through a process of involvement and empowerment. The panel introduced the concepts of PPI, described the purpose of PPI, reflected upon the logistic and ethical considerations thereof and considered how PPI had been utilised effectively in HIV research and policy change. The audience discussion focused on ways in which PPI could more readily and consistently be encouraged within oral health research involving PLHIV.

HIV and stigma in the healthcare setting.

People living with HIV (PLHIV) continue to endure stigma and discrimination in the context of health care despite global improvements in health outcomes. HIV stigma persists within healthcare settings, including dental settings, manifesting itself in myriad, intersecting ways, and has been shown to be damaging in the healthcare setting. Stigmatising practices may include excessive personal protective equipment, delaying the provision of care or unnecessary referral of PLHIV to specialist services in order to access care. The workshop entitled "HIV and Stigma in the Healthcare Setting" provided an overview of the concept and manifestation of HIV stigma and explored the disproportionate burden it places on groups that face additional disadvantages in accessing care. The final part of the workshop concluded with a review of institutional and community-based interventions that worked to reduce HIV stigma and group discussion of the ways in which these strategies might be adapted to the dental workforce.

Reducing HIV-related stigma: lessons learned from Horizons research and programs.

Since the early years of the human immunodeficiency virus (HIV) epidemic, stigma has been understood to be a major barrier to successful HIV prevention, care, and treatment. This article highlights findings from more than 10 studies in Asia, Africa, and Latin America-conducted from 1997 through 2007 as part of the Horizons program-that have contributed to clarifying the relationship between stigma and HIV, determining how best to measure stigma among varied populations, and designing and evaluating the impact of stigma reduction-focused program strategies. Studies showed significant associations between HIV-related stigma and less use of voluntary counseling and testing, less willingness to disclose test results, and incorrect knowledge about transmission. Programmatic lessons learned included how to assist institutions with recognizing stigma, the importance of confronting both fears of contagion and negative social judgments, and how best to engage people living with HIV in programs. The portfolio of work reveals the potential and importance of directly addressing stigma reduction in HIV programs.

A longitudinal quality-of-life study of HIV-infected persons in South India: the case for comprehensive clinical care and support services.

This study longitudinally assesses the quality of life (QOL) of HIV-infected individuals in a resource-limited setting prior to the extensive generic roll-out of highly active antiretroviral therapy. Data was collected on 136 individuals receiving clinical care at Y.R. Gaitonde Centre for AIDS Research and Education YRG CARE, a large community-based HIV tertiary care referral center in Chennai, South India. The QOL questionnaire was administered to participants at baseline, 6-months follow-up, and 12-month follow-up, and analysis of variance was used to assess for significant differences in mean QOL scores for each of these visits. Study findings showed that QOL scores significantly improved in all five domains of the questionnaire between participants' baseline visit, second interview, and third interviews (p < 0.01). We conclude that a multidisciplinary approach to managing HIV infection can enhance patients' QOL, independent of antiretroviral therapy.

Exploring context and dynamics of homosexual experiences among rural youth in India.

There is a lack of community-based studies that have examined level and context of homosexual activity in India among male youth. As part of a larger study on sexual behavior and gender attitudes of rural youth in Northern India, this study identified a subgroup of young men who reported homosexual experiences, even though they did not identify themselves as homosexual. This article attempts to examine the levels and range of sexual practices and attitudes of the homosexually active male youth by comparing them with their peers who reported heterosexual experiences. Study findings indicate that about one-fifth of sexually active male youth reported homosexual experiences. These young men begin their sexual careers early; engage with a higher number of sexual partners, both male and female; and are more likely to report inconsistent condom use, as compared to their heterosexually active peers. With high levels of partner mixing and inconsistent condom, use it appears that, for this subgroup of young men with high risk behaviors, homosexual experiences are only one part of their sexual lives and not the main factor that would contribute to their HIV vulnerability. Interventions need to be mindful of these issues, rather than rushing into labelling youth as homosexual or heterosexual for programmatic purposes. At the same time, as high-risk behaviors are largely unexplored among a general population of rural male youth, there is need for more in-depth ethnographic and culturally specific sexuality research to explore if there is a subculture that may promote sexual practices including same-sex activities that influences HIV vulnerability.

Meeting the sexual and reproductive health needs of people living with HIV: challenges for health care providers.

A trained health service workforce is critical to ensuring good quality service delivery to people with HIV. There is only limited documented information on the challenges and constraints facing health care providers in meeting the sexual and reproductive health needs of HIV positive women and men. This paper reviews information on providers' attitudes, motivation and level of preparedness in addressing the sexual and reproductive health needs of people living with HIV in the context of the human resources crisis and emerging treatment and prevention strategies. There is a need for significant investment in improving the health infrastructure and providers' ability to take universal precautions against infection in health care settings. Additionally, there is need for comprehensive and appropriate training for health care providers to build their capacity to meet the requirements and expectations of different sub-populations of HIV positive people. This includes not only physicians but also nurses and midwives, who are the primary caregivers for most of the population in many resource-poor settings. Supportive and knowledgeable providers are crucial for helping HIV positive people seek and adhere to treatment, prevent sexually transmitted infections, unintended pregnancies and vertical transmission of HIV and support positive living free from stigma and discrimination. Providers, some of whom may themselves be HIV positive, can make an important difference, especially if they are supported in their working conditions, are knowledgeable about HIV and sexual and reproductive health and have the skills to provide good quality care.

Challenging and changing gender attitudes among young men in Mumbai, India.

This article presents findings from a pilot intervention in 2005-6 to promote gender equity among young men from low-income communities in Mumbai, India. The project involved formative work on gender, sexuality and masculinity, and educational activities with 126 young men, aged 18-29, over a six-month period. The programme of activities was called Yari-dosti, which is Hindi for friendship or bonding among men, and was adapted from a Brazilian intervention. Pre- and post-intervention surveys, including measures of attitudes towards gender norms using the Gender Equitable Men (GEM) Scale and other key outcomes, qualitative interviews with 31 participants, monitoring and observations were used as evaluation tools. Almost all the young men actively participated in the activities and appreciated the intervention. It was often the first time they had had the opportunity to discuss and reflect on these issues. The interviews showed that attitudes towards gender and sexuality, as reported behaviour in relationships, had often changed. A survey two months later also showed a significant decrease in support for inequitable gender norms and sexual harassment of girls and women. The results suggest that the pilot was successful in reaching and engaging young men to critically discuss gender dynamics and health risk, and in shifting key gender-related attitudes.