The study focuses on the emotional experiences of individuals living with HIV as they navigate critical points in their healthcare journey, employing a narrative medicine approach. Preliminary findings indicate that many individuals initially experience fear and bewilderment upon diagnosis, with negative emotions prevalent throughout the process. The research aims to enhance empathy between healthcare providers and patients, ultimately improving care through the collection of personal stories which will be analyzed for emotional insights.

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?