The project “VISION AMD: Value in Stories of Illness on Neovascular Wet AMD”, has aimed to map the journey of people with wet macular degeneration with the support of twelve Italian centers of Ophthalmology, and to analyze this journey collecting narratives of patients, caregivers, and healthcare professionals.
It has been applied a methodology that we can define with the neologism of “Narrative Healthcare”, where patients’ and caregivers’ narratives are useful to reorganize early diagnosis pathways, prompt intervention, and rehabilitation of people affected by age-related macular degeneration.
It is interesting to see how, through narratives collected in day-hospitals, people confused us for an additional service offered by the hospital, witnessing the necessity of a listening-point for patients, in a healthcare model growing through multidisciplinary team and involving several professional figures.
So, not just Narrative Medicine in the doctor-patient relationships, but Narrative Healthcare, including several roles: physicians, nurses, therapists, facilitators, social assistants, educators, and the many other healthcare professions.
Narrative Healthcare because it reveals also the patient’s step before arriving in the expert center – journeys often roving and consuming Healthcare System and familiar resources. Narrative Healthcare because it does epidemiology, that is discloses that 50% of people do not know the disease at the diagnosis.