Emotions of people living with HIV


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Poster presentato al VI congresso ICAR (Italian Conference on AIDS and retrovirus), 25-27 maggio 2014, Roma

Lo scopo dello studio "emotions of people living with HIV" è quello di determinare, attraverso l'utilizzo di un approccio narrativo, le emozioni prevalenti delle persone che vivono con l'HIV per comprendere cosa hanno provato in alcune aree critiche del percorso di cura.
Comprendere quali sono le emozioni è un obiettivo importante per contribuire a sviluppare una maggiore consapevolezza nelle persone con HIV e permettere agli operatori sanitari di attivare un'assistenza più attenta all'individuo.

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Emotions of people living with HIV

  1. 1. Authors M. Andreoni1 , A. Lazzarin4 , A. Ammassari2 , A. Cappuccio13 , M. Cascio3 , A. Castagna 4 , A.M. Cattelan5 , B.M. Celesia6 , G.M. Corbelli7 , G. d’Ettorre8 , M. Errico3 , S. Marcotullio9 , G. Orofino10 , S. Pieralli11 , S. Rusconi12 , M.G. Marini13 , L. Reale13 Hospital: 1.Università degli studi di Tor Vergata, Roma, 2.Istituto Nazionale per le Malattie Infettive “L. Spallanzani”, 3.NPS Italia Onlus, 4.Unità Funzionale Malattie Infettive AO “San Raffaele”, 5.Malattie Infettive SOC Rovigo, 6.Istituto di Malattie Infettive Azienda Ospedaliera A.R.N.A.S “Garibaldi” Catania, 7.ANLAIDS ONLUS, 8.Divisione Universitaria di Malattie Infettive e Tropicali Policlinico Umberto I, Roma, 9.Nadir Onlus, 10.Ospedale “Amedeo di Savoia”, Torino 11.Plus Onlus, 12.Azienda Ospedaliera "Luigi Sacco", Università degli studi di Milano, 13.Area sanità e salute di Fondazione ISTUD The goal of the current study is to determine, through the use of a narrative approach, the prevailing emotions that people living with HIV experienced, facing the most critical steps of the pathways of care. Narrative medicine is based patients’ narration of their experience and how illness impacted their mind set and emotional realm. Stories help to give meaning to the global experience of living with the HIV, and foster the achievement of empathy toward an alignment between health care professionals and people with HIV, producing better health care. Luigi Reale Fondazione ISTUD Piazza IV Novembre 7, Milano lreale@istud.it www.medicinanarrativa.eu References: The preliminary assessment has allowed to identify the critical moments of pathways of care. Upon receipt of the diagnostic test confirming HIV infection, the prevailing emotion was deep fear in 66% of cases, bewilderment in 32% and almost in nobody positive emotions. Immediately after the first visit with specialist, positive emotions were felt by 38% of individuals whereas negative emotions by 38% and bewilderment in 24%. When back home, negative emotions arose to 70%, only 11% experienced positive emotions, and 19% still were bewildered. From this preliminary results, it is clear that still a better effort should be undertaken to understand the emotional life of people living the pathways of care for treating HIV condition. This is the reason which led to this narrative observational study, for which definite results are planned by end of this year. The innovation will be to integrate the sequence of activities of HIV patient's journey with the emotional aspects of the person living with HIV. After a preliminary assessment, involving 38 people with HIV in March 2013 at NADIR associations conference, the plot for the narrative was developed in October 2013, a dedicated software was set up and the stories collection starts through website in April 2014. The observational study forecasts the collection of at least 200 stories of people living with HIV in Italy through narrative medicine. The infectious disease physicians have a dispenser that will hold 5 cards, each of a different color, corresponding to the chart of which is composed of the HIV patient's journey. After presenting the aims and objectives of this research, the physician may invite the person with HIV to go on the dedicated web page (www.medicinanarrativa.eu/storiehiv) to write his own story by delivering the cards corresponding to the stage of the care pathway in which the person is and a flyer summary of the main features of the research. After signing the consent to the processing of personal data, people with HIV will select the phase of the care pathway they are facing and will leave written experience and emotions through a semi- narrative plot. Stories will be transcribed anonymously, and coded with NVivo software, a tool which analyses qualitative information, frequencies of words and their synonymous, able to build the semantic maps. This will be applied to the emotions text with attention to the context in which they are described. Preliminary results: Conclusions: Aims: Emotions of people living with HIV Methods: HIV infection is a condition that affects people not only from a clinical point of view but also emotionally. The emotional understanding is a major step for people living with HIV to develop a deeper awareness and for health care professionals to and improve not only the curing but also the caring. Backgrounds: “Narratives offer a method for addressing existential qualities such as inner hurt, despair, hope, grief, and moral pain which frequently accompany, and may even constitute, people's illnesses.” Greenhalgh and Hurtwitz of King’s College, BMJ , 1999: “Narrative based medicine: Why study narrative?”. Why narrative?