RESUMO
Objectives: This study sought to understand how people living with HIV experience, perceive, and navigate stigma in their everyday life and in care settings in an urban French-speaking area in Switzerland. Methods: Semi-structured interviews were carried out with 19 people living with HIV in Lausanne concerning their experience of HIV-related stigma in both everyday life and in healthcare settings. Content analysis was performed to identify main and sub-themes. Results: "Living with HIV" posed little or no difficulty for participants. However, the burden of anticipated and internalized HIV-related stigma played a disproportionately large role in their lives. Participants considered the general population's low level of knowledge about HIV as problematic in this regard. While participants reported few examples of enacted stigma generally, healthcare environments were sometimes experienced as sites of prejudice and discrimination. However, some healthcare professionals were also sources of information and knowledge, contributing to participants' "journeys of self-acceptance." Conclusion: Even in an urban environment in a country with ready access to healthcare and education, HIV-related stigma remains a concern for people living with HIV.
Assuntos
Infecções por HIV , Pesquisa Qualitativa , Estigma Social , Humanos , Suíça , Infecções por HIV/psicologia , Masculino , Feminino , Adulto , Pessoa de Meia-Idade , Entrevistas como AssuntoRESUMO
Mindfulness meditation is a mind-body approach that helps to cope with psychological or physical symptoms such as pain. To date, this approach is still not widely available to patients in our French-speaking somatic clinical settings, despite its scientific validation. This article describes three mindfulness meditation programs delivered at Lausanne University Hospital (CHUV) to people living with HIV, cancer or chronic pain. It highlights the issues related to the involvement of participants in these programs as well as those related to their implementation in a Swiss somatic, teaching French-speaking hospital.
La méditation de pleine conscience est une approche corps-esprit qui permet de faire face à des symptômes psychiques ou physiques tels que la douleur. À ce jour, malgré sa validation scientifique, cette approche reste peu accessible pour les patient-e-s dans nos contextes cliniques somatiques romands. Cet article décrit trois programmes de méditation de pleine conscience délivrés au sein du CHUV (Lausanne), à des personnes qui vivent avec un VIH, un cancer ou une douleur chronique. Il met en lumière les enjeux liés à l'engagement des participant-e-s dans ces programmes mais aussi ceux en lien avec leur implémentation dans un contexte hospitalier somatique romand.
Assuntos
Dor Crônica , Meditação , Atenção Plena , Humanos , Exame Físico , Dor Crônica/terapia , Hospitais UniversitáriosRESUMO
HIV remains a highly stigmatized condition, negatively impacting social and psychological outcomes for those living with the virus. Services for people living with HIV need to reflect this reality and be relevant to their needs. In this article, we describe initiatives at the Infectious Diseases Outpatients' Service at Lausanne University Hospital. Peer-based social support, the acquisition and consolidation of knowledge and competence through therapeutic education programs, employing people living with HIV within the service, and involving them in research processes: these all contribute to the empowerment of those concerned, and to fighting the stigma they might anticipate or encounter. In conjunction with - and complementary to - medical care, these services play an important role in improving the quality of life of people living with HIV today.
Le VIH demeure une maladie chronique hautement stigmatisée, avec un impact psychologique et social important chez les personnes concernées. Il est alors nécessaire de proposer des prestations adaptées et pertinentes aux besoins réels de ces dernières. Dans cet article, nous présentons les initiatives mises en place par la consultation des maladies infectieuses ambulatoire du CHUV. Le soutien social entre pairs, le renforcement et/ou l'acquisition de compétences et connaissances via l'éducation thérapeutique, l'embauche des personnes vivant avec le VIH et leurs implications dans la recherche : autant de facteurs qui contribuent à l'empowerment, et qui tendent à lutter contre la stigmatisation et l'isolement. Complémentaires à la prise en charge médicale, ces éléments jouent un rôle important en améliorant la qualité de vie des personnes concernées.
Assuntos
Infecções por HIV , Qualidade de Vida , Humanos , Suíça/epidemiologia , Apoio Social , Estigma Social , Infecções por HIV/terapia , Infecções por HIV/tratamento farmacológico , HospitaisRESUMO
BACKGROUND: Recent advances made in cell and gene therapies for cancer suggest that they represent plausible strategies to cure HIV. However, the health risks and constraints associated with these therapies require a deeper understanding of the expectations of such treatments among people living with HIV (PLWH). METHODS: We conducted 15 semistructured in-depth interviews among patients from 2 HIV units in Switzerland. After a conversation about their perceptions of research on HIV therapies, participants were provided with a trial description using a gene-modified cell therapy as a potentially curative approach. They were invited to discuss how they might consider participation in the trial. Content analysis was performed to identify core themes. RESULTS: Participants perceived the trial as burdensome and uncertain. Most were aware that cure was not guaranteed, and 6 of the 15 considered that they would participate. Two main concerns were expressed about potential participation: (1) the impact on the professional life and fear to be stigmatized because of this and (2) the fact that stopping antiretroviral treatment would challenge the balance currently achieved in their lives. The decision to participate would depend on their understanding of the trial, the availability of sufficient information, and the relationship with health care professionals. CONCLUSION: Involving PLWH in early stages of research would be crucial to improve their understanding of gene-modified cell therapies. It could also help adapt trials to address key factors, including the anticipation of stigma, which may discourage PLWH from participating in treatment research.
Assuntos
Terapia Baseada em Transplante de Células e Tecidos/métodos , Terapia Genética/métodos , Infecções por HIV/terapia , Experimentação Humana Terapêutica , Humanos , Pesquisa Qualitativa , SuíçaRESUMO
Medical advances in the treatment of HIV over the last 35 years mean that people living with HIV (PLHIV) now have a life expectancy close to that of the general population. Further, when successfully treated, PLHIV cannot transmit the virus. Despite this, HIV-related stigma remains widespread, including within healthcare settings. Stigma is not a vague sociological notion but represents a real threat to public health, with repercussions for both PLHIV and HIV-negative individuals. Stigma has been shown to have a negative impact on HIV prevention, testing, access to health services, and on the healthcare management of PLHIV. Taking stigma into consideration is essential, both in meeting the medical and psycho-social needs of PLHIV and in order to effectively combat HIV/AIDS.
Les progrès des 35 dernières années dans la prise en charge médicale du VIH ont permis aux personnes vivant avec ce virus (PVVIH) d'avoir une espérance de vie similaire à celle de la population générale. Avec un traitement efficace, les PVVIH ne peuvent plus transmettre le virus. Cependant, la stigmatisation associée au VIH reste considérable, y compris dans les milieux de soins. La stigmatisation n'est pas une vague notion sociologique, mais un véritable enjeu de santé publique pouvant avoir un impact tant chez les personnes séronégatives que chez les PVVIH. Elle a un impact néfaste sur la prévention de l'infection, le dépistage, l'accès aux soins, et sur la gestion de la santé des PVVIH. Une prise en considération de la stigmatisation est essentielle pour garantir aux PVVIH un accompagnement médical et psychosocial optimal, ainsi que pour lutter contre l'épidémie du VIH/sida.
