SPARE – SPONDILOARTRITE ASSIALE: IL RACCONTO DELLE ESPERIENZE
BIRDS – THE BEAT OF IRD STORIES
NARRARSI AI TEMPI DEL COVID-19
DRONE – INSIDE THE RESEARCH: OBSERVATORY ON MIGRAINE NARRATIVES
Through narrative medicine, the project wants to welcome the narratives of patients and those living next to them to understand the migraine experience in Italy.
DISABILITY AND WORK: A RESEARCH THROUGH THE NARRATIVES OF THE PROTAGONISTS
The “Disability and work: a research through the narratives of the protagonists” project aims to document the stories of people with disabilities in the work field, documenting the integration challenges, enhancing best practices, with the aim to raise awareness and training for an inclusive corporate culture.
DIAMANTE STUDY TMC114FD1HTX4011
The DIAMANTE study, started in June 2018, involved about 20 Italian centres with the aim of collecting data on HIV-1 positive (+) patients treated with D/C/F/TAF, regarding the effectiveness of therapy and Patient Reported Outcomes (PROs).
OUT OF THE BLUE
The “Out of the Blue” project aims to listen to people experiencing major depression and those taking care of them, family members and health professionals, through a systematic collection of narratives from these three perspectives.
PRAXIS – PRADER WILLI EXCELLENCE IN CARE WITH STORY TAKING
The PRAXIS project – wanted by the Italian Society of Pediatric Endocrinology and Diabetology, SIEDP – aimed to collect experiences on the care experience of children, adolescents, adults with Prader-Willi, their families and health professionals.
ERE – EPILEPTOLOGISTS TELLING EPILEPSY
The ERE project aimed to collect the epileptologists’ narratives to let emerge their perspective on the condition experience. The parallel chart tool provided professionals with a support for the management of care relationships, able to improve their capability to listen attentively and understand patients’ needs.
SMART – MULTIPLE SCLEROSIS: LISTENING TO THE MULTI-PROFESSIONAL REALITIES OF NEUROLOGICAL TEAMS
The SMART project is sponsored by the Italian Society of Neurology and arises from the collaboration between Biogen Italia and ISTUD Foundation. It aims to investigate the experience of clinical practice and the perspectives of neurological professionals and nurses working in Multiple Sclerosis centres.
NARRATE YOUR EXPERIENCE OF COVID-19 EMERGENCY
A section to collect narratives of anyone willing to share his/her experience of the COVID-19 emergency.
NARRATIVE MEDICINE STORYLINE
TRUST – THE ROADMAP USING STORY TELLING
The TRUST project aimed to assess the quality of life of people with heart failure, from the first signs to the communication of the diagnosis of heart, following its evolution over time.
The Healthy project was funded by the European Erasmus plus programme and carried out in collaboration with European partners (Turkey, Bulgaria, Romania, Spain). It aimed to provide tools to raise awareness about a healthy lifestyle.
OPAL – ORGANIZATION OF THE CARE PATH OF PEOPLE WITH DIABETIC MACULAR EDEMA
The OPAL project was addressed to people with diabetic macular edema and their families.
NOI – TECNOLOGIA E BAMBINO
VIVERE, ASSISTERE E CURARE LA PERSONA CON CARCINOMA PROSTATICO IN FASE METASTATICA
F.A.R.O. PROJECT – ACRONYM OF MAKE LIGHT THROUGH TALES OF COPD
The F.A.R.O. project – acronym of Make light Through Tales of COPD (chronic obstructive pulmonary disease) – has the purpose of making light above the experienced of people with COPD and also above their relatives, collecting their experiences written.
SOUND – WRITING NARRATIVES OF PATIENTS WITH SEVERE ASTHMA FOR A NEW EFFECTIVE DIVERSIFICATION AND DEVELOPMENT OF CARE
Aim of the project is the collection of narrated experiences by doctors in the care context of patients with severe asthma through parallel chart.
NET: BROADENING NARRATIVES IN PEOPLE WITH NEUROENDOCRINE CANCER
Aim of the project is collecting narratives of young people with a diagnosis of neuroendocrine cancer afferent to IEO (European Institute of Oncology) in order to directly comprehend from patients’ words the experience of a young person facing this disease, and to understand possible areas of improvement in the taking care.
POL.I.S. – POLYCYTHEMIA VERA: SOCIAL AND ECONOMIC, PSYCHOLOGICAL, VALUE AND PRODUCTIVE IMPACT ON FAMILIES
The quali-quantitative approach will explore the impact of polycythemia vera (burden of illness) on the quality of life of people affected by a physical, psychological, emotional, social, and economic point of view.
The project is handled by ISTUD Foundation with the unconditioned grant of Novartis.
LE PAROLE DEL RESPIRO 2016 – LA MEDICINA NARRATIVA PER LA CURA DELLA BRONCOPNEUMOPATIA CRONICO OSTRUTTIVA
THE LIFE OF PEOPLE WITH IMMUNE THROMBOCYTOPENIC PURPURA
The Healthcare and Well-being area of the ISTUD Foundation, with AIPIT ONLUS – Italian Association Immune thrombocytopenic purpura – with the sponsorship of the Novartis company, is now leading a research to understand the experienced of people with Immune thrombocytopenic purpura.
PRESERVIAMO – 2016
Care and intervention experience of fertility preservation in women undergoing potentially harmful therapies for reproductive capability.
ON MY SKIN: NARRATIVES OF EVERYDAY PSORIASIS – 2016
The project aimed to collect narratives of young people living with psoriasis or of their familiars.
NARRATING STORIES OF PEOPLE WITH PULMONARY HYPERTENSION – 2015
Starting from an analysis of 130 narratives of people with pulmonary hypertension collected during years by AIPI (Pulmonary Hypertension Italian Association), the project drafted and understood the journey of who lives the experience of pulmonary hypertension, the emotional impact linked to this disease, the diagnostic and therapeutic difficulties in the management of pulmonary hypertension, the delicate moment of the transplantation, the key-role of patients’ association, the explicit and latent needs of people living this condition.
BREATHING WORDS – 2015
Aim of the project was collecting the experiences narrated by the physician in the caring of patients through the parallel chart tool. The project, started in October 2015 and ended in April 2016, allowed the COBP patients’ experience to emerge, and to give voice – for the first time – to a different care pathway and taking charge of the patient in his/her meaning of person.
The project aimed to map the journey of people with wet AMD through the involvement of 12 Italian ophthalmology centres and to retrace this journey collecting narratives of people with maculopathy, caregivers and healthcare professionals.
BORN BEFORE THE TIME: THE EXPERIENCE OF FAMILIES IN ITALY – 2014/2015
The project realized the collection of narratives from families living the experience of a premature birth and the following care pathway. The aim was that of collecting – through narratives – experiences, requests, and expectations emerging during the path, in order to individuate the most appropriate intervention for the service management and the support for families.
LIVING WITH CHRONIC URTICARIA – 2014/2015
The project aimed to comprehend needs of people everyday living with chronic urticaria, in order to improve the quality of offered care services.
Aim of the project was to analyse, through Narrative Medicine, the knowledge of the emotional, physical, and psychological burden of myelofibrosis on patients and their families, in order to delineate a framework as complete as possible on the so-called burden of illness of this pathology.
HIV PATIENT’S JOURNEY – 2014
The project concerns the definition of the journey that the person with HIV carries out, from the entrance in the healthcare centre, to the visits with Infective Disease Operative Units, until the achievement of the optimal management of the infection.
BRIGHT STORIES: EXPERIENCES OF EXTRAORDINARY EVERYDAY LIFE WITH MULTIPLE SCLEROSIS – 2014
The aim of the project was that of collecting and publishing the “bright” stories of people living with Multiple Sclerosis, that is those stories transmitting courage, confidence and willingness to find a lifestyle even in the everyday management on the pathology to everyone already sharing or facing the same situation.
LIFE STORIES IN THE SILVER YEARS – 2013
From this project was born a book collecting 50 narratives of fragile elderly people and of their familiar assistants.
CRESCERE: CREATE WITH STORIES OF CARE EXPERIENCES EMPOWERMENT PURSUING THE EXCELLENCE – 2013
The project wanted to collect, through Narrative Medicine tool, the stories of children and adolescents with growth hormone deficiency, of their families and of the expert representatives of care centres.
Aim of the project was tracing the professional identity of Italian pain therapists regarding existential values and relational networks in pain therapy. The methodology consisted of a written interview comprehending elements of Narrative Medicine, useful tool of enquiry on the personal and organisational experience.
ONICE PROJECT. NARRATED OBESITY IN ITALY: TOWARD AN EFFICIENT CARE – 2011
The project aimed to promote a culture of good care on obesity through a methodology integrated with Evidence-Based Medicine and broadly spreading in the current scientific panorama: Narrative-Based Care (or Medicine).
ANTARES. ANALYSIS OF NON-TRAUMATIC SPINAL CORD INJURIES: ASSISTANCE, RULES, TEAMS, STATISTICS – 2011
Care pathways for people with a non-traumatic spinal cord injury were the object of ANTARES project.
THE COMPOSITION OF THE SOCIAL AND HEALTHCARE OFFER FOR PEOPLE WITH SPINAL CORD INJURY IN ITALY – 2011
The project wanted to comprehend which kind of healthcare offer is there for spinal cord injury care, and to concretely propose a National Register for spinal cord injuries in order to obtain perspective data necessary to the creation of a network between the main structures treating spinal cord injuries.
SLANCIO. ASL DISEASE: NETWORK OF CARES IN ADVANCED ORGANIZATIONS – 2010
The project was realized by the Health and Wellbeing Area of ISTUD Foundation, with the collaboration of FIASO and AISLA (Amyotrophic Lateral Sclerosis Italian Association) in order to reach a direct and deep knowledge of the current diagnostic and therapeutic procedures of people with ALS in two Regions: Lombardy and Veneto.
NEEDS AND COSTS OF PEOPLE WITH SPINAL CORD INJURY AND THEIR FAMILIES – 2009
This was the first national project with the aim to explicate which are tangible and intangible needs and costs of people with spinal cord injury and their families.
CONSTELLATION PATIENT, FAMILY AND HEALTHCARE PROFESSIONAL – 2007
The aim of the project was analysing, through semistructured interviews and questionnaires, the aspects of hospitalization. In particular, the project examined quality of life, economic burden, human relationships of patients and their family afferent to the Haematology Centre of Umberto I Hospital, and some organizational, welfare and clinical factors through opinions expressed by healthcare professionals.
ANALYSIS OF THE WORK CLIMATE IN PALLIATIVE CARES CENTRES – 2006
The project consisted in the creation, administration and – thereafter – elaboration of a questionnaire dedicated to all operators involved, of any profession, in Palliative Cares centres (physicians, nurses, psychologist, volunteers, and so on).