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Investigating coping and stigma in people living with HIV through narrative medicine in the Italian multicentre non-interventional study DIAMANTE.

ABSTRACT: Antiretroviral therapy (ART) significantly reduced Human Immunodeficiency Virus (HIV) morbidity and mortality; nevertheless, stigma still characterises the living with this condition. This study explored patients' coping experience by integrating narrative medicine (NM) in a non-interventional clinical trial. From June 2018 to September 2020 the study involved 18 centres across Italy; enrolled patients were both D/C/F/TAF naïve and previously ART-treated. Narratives were collected at enrolment (V1) and last visit (V4) and then independently analysed by three NM specialist researchers through content analysis. One-hundred and fourteen patients completed both V1 and V4 narratives. Supportive relationships with clinicians and undetectable viral load facilitated coping. Conversely, lack of disclosure of HIV-positive status, HIV metaphors, and unwillingness to narrate the life before the diagnosis indicated internalised stigma. This is the first non-interventional study to include narratives as patient reported outcomes (PROs). Improving HIV awareness and reducing the sense of guilt experienced by patients helps to overcome stigma and foster coping.

SUBMITTER: Antinori A

PROVIDER: S-EPMC10582167 | biostudies-literature | 2023 Oct

REPOSITORIES: biostudies-literature

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Investigating coping and stigma in people living with HIV through narrative medicine in the Italian multicentre non-interventional study DIAMANTE.

Antinori A A Vergori A A Ripamonti D D Valenti D D Esposito V V Carleo M A MA Rusconi S S Cascio A A Manzillo E E Andreoni M M Orofino G G Cappuccio A A Reale L L Marini M G MG Mancusi D D Termini R R Uglietti A A Portaro M M

Scientific reports 20231017 1

Antiretroviral therapy (ART) significantly reduced Human Immunodeficiency Virus (HIV) morbidity and mortality; nevertheless, stigma still characterises the living with this condition. This study explored patients' coping experience by integrating narrative medicine (NM) in a non-interventional clinical trial. From June 2018 to September 2020 the study involved 18 centres across Italy; enrolled patients were both D/C/F/TAF naïve and previously ART-treated. Narratives were collected at enrolment ( ...[more]

PMID: 37848464

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Project description:ObjectivesPrader-Willi syndrome (PWS) significantly impacts health-related quality of life; however, its relational and existential aspects remain unknown in Italian clinical and social debate. The project aimed to investigate the impact of PWS on illness experience through narrative medicine (NM) to understand the daily life, needs and resources of patients with PWS and their caregivers, and to furnish insights for clinical practice.Design and settingThe project involved 10 medical centres of the Italian Network for Rare Diseases and PWS family associations and targeted underage and adult patients with PWS and their caregivers. Written interviews, composed by a sociodemographic survey and a narrative, were collected through the project's website. Three dedicated illness plots employed evocative and open words to facilitate individual expression and to encourage reflection. Narratives were analysed through NVivo software. Researchers discussed the results with the project's steering committee.ParticipantsTwenty-one children and adolescents and 34 adults with PWS joined the project, as well as 138 caregivers. A PWS diagnosis or the caregiving of a patient with PWS older than 5 years represented the eligibility criteria, as well as the willingness to share their illness experience by writing and the ability to communicate in Italian.ResultsThe analysis of narratives led to understanding the PWS social and relational issues concerning diagnosis and current management, PWS daily experiences and social contexts, PWS implications in the working sphere and participants' future perspectives. Narratives demonstrated that PWS management affects relationships and work-life balance and that social stigma remains present.ConclusionThe project represented the first effort to investigate the impact of PWS on illness experience in Italy through NM while considering the perspectives of patients with PWS and their caregivers. The findings indicated that a multiprofessional approach is fundamental to ensure adequate treatment and provided elements for its improvement.

Project description:Purpose: Complementary and Alternative Medicine (CAM) interventions are widely used by patients with chronic disorders, including cancer, and may interact with cancer treatment. Physicians are often unaware of this, probably due to poor patient-physician communication on CAM. The purpose of this study was to evaluate physicians' knowledge, attitudes and practice patterns regarding CAM in a survey conducted in Italy. Methods: A questionnaire was administered to 438 physicians (11 Italian hospitals) who predominantly treat patients with chronic disease, to collect personal and professional data and information on attitudes toward CAM and its possible role in Conventional Medicine (CM). Results: Of the 438 participants, most were specialists in oncology (18%), internal medicine (17%), surgery (15%), and radiotherapy (11%). Most worked at university (44%) or research hospitals (31%). Forty-two percent of participants believed that CAM could have an integrative role within CM. Oncologists were the physicians who were best informed on CAM (58%). Physicians working at research institutes or university hospitals had a greater knowledge of CAM than those employed at general hospitals (p < 0.0001), and those who were also involved in research activity had a greater knowledge of CAM than those who were not (p < 0.003). Length of work experience was significantly related to CAM knowledge. Moreover, 55% of participants suggest CAM interventions to their patients and 44% discuss CAM with them. The best-known interventions were acupuncture, Aloe vera and high-dose vitamin C. Conclusion: CAM use by patients with chronic disease and/or cancer has become a topical issue for the scientific community and for physicians. Knowing the reasons that prompt these patients to use CAM and guiding them in their decisions would improve treatment and outcomes and also benefit healthcare systems. Our findings contribute to a greater understanding of CAM knowledge, attitudes, and practice among Italian physicians. Further research is needed to identify the more effective CAM treatments and to work toward an integrated healthcare model.

Project description:BackgroundMental health issues are common among university students, but the latter are unlikely to seek professional help even when mental health services are available. Coping strategies, stigma and psychological distress are often considered as factors that can affect help-seeking intentions in university students.MethodsThis study aimed to determine the role of coping strategies, stigma and psychological distress on the intentions to seek professional help for psychological problems. All students (N = 13,886) from an Italian medium-sized university were asked to participate in a multidimensional online survey and 3754 (27.1%) agreed to participate. A Structural Equation Modelling approach was applied to explore the simultaneous direct and indirect effects of distress, stigma and coping strategies on professional help-seeking intentions.ResultsResults showed that students were not very likely to seek professional help and, through the Structural Equation Model, psychological distress was found to be positively correlated with coping strategies, which in turn was negatively associated with the stigma of seeking help. The latter was negatively associated with professional help-seeking intentions. These effects suggest that students with significant psychological distress use coping strategies to face the stigma of seeking help: the lower the stigma of seeking help, the higher the chance of developing intentions to seek professional help.ConclusionsThis study suggests the importance of implementing programs to encourage college students to seek help, including measures that foster a stigma-free environment, reduce psychological distress and promote the use of adaptive coping strategies. Interventions should be focused firstly on self-stigma and secondly on perceived stigma, taking into consideration the level of psychological distress and social stereotypes associated with mental disorders and help seeking behaviours. Programs about coping are also essential and should focus on promoting emotion-focused strategies and problem-focused strategies.

Dataset Information

Investigating coping and stigma in people living with HIV through narrative medicine in the Italian multicentre non-interventional study DIAMANTE.

Publications

Investigating coping and stigma in people living with HIV through narrative medicine in the Italian multicentre non-interventional study DIAMANTE.

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