Research Projects

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Total of collected narratives
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5
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6
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6
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Involved healthcare professionals
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1
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2
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2
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Patients and caregivers narrated their story

Current Projects

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Narrative Medicine Storyline

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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.

Closed Projects

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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.

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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 granf of Novartis.

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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.

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On my skin: narratives of everyday psoriasis – 2016

The project aimed to collect narratives of young people living with psoriasis or of their familiars.

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The value for the person with Beta Thalassaemia – 2015

Aim of the project was understanding the burden of Beta Thalassaemia on quality of life of affected people from a physical, psychological, emotional, social, and economic point of view.

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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.

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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.

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VISION AMD: Value in stories of illness on neovascular wet AMD – 2015

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.

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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.

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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.

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Back to life: narratives of patients with myelofibrosis – 2014

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.

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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.

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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.

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People with Multiple Sclerosis on web: which horizons – 2013

The aim of the project was that of studying the experience of patients affected by Multiple Sclerosis through their communication canals represented by main blogs and online forums.

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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.

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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

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VEDUTA: Professional identity and relational network in pain therapy – 2012

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.

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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).

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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.

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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.

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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.

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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.

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Being expert in changing Healthcare – 2008

The project analysed the current and prospective competencies in the private healthcare sector in Lombardy.

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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.

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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).

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Family and the person terminally ill – 2005

The aim of the project was to evaluate family’s quality of life area, the impact with palliative cares structures and the economic consequences on the family itself.

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