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Lived experience of patients with glaucoma glaucoma: a phenomenological study

Silvio Simeone, Gianluca Pucciarelli, Marco Perrone, Gianpaolo Gargiulo, G.Isabella Continisio, Assunta Guillari, Teresa Rea

Abstract

INTRODUCTION: Glaucoma is often a misdiagnosed pathology and is one of the main causes of blindness in the world population.Glaucoma frequentlycauses limitations in theactivities of daily livingand changes the patient’s quality of life. AIM: The purpose of our study is to describe the life experiences of subjects in southern Italy suffering from glaucoma.

METHOD: Phenomenological study

RESULTS: From the analysis of interviews six main themes emerged:(1) a profound change in lifestyle, (2) casual diagnosis,(3) independent research,(4) fear of blindness,(5) fear of being a burden to family, and (6) fear of familial pathology. Two additional themes appeared: the subjects felt lucky not to have a deadly disease and were uncertain about the future.

CONCLUSION: The negative aspects prevail over any positive facets. A deep understanding of these experiences can help health care professionals to deliver correct holistic support. Keywords: Glaucoma, lived experience, phenomenological study

L’esperienza di vita dei pazienti con glaucoma: uno studio fenomenologico

INTRODUZIONE: Il glaucoma è una delle principali cause di cecità nel mondo. Spesso la sua diagnosi avviene in maniera occasionale; tale patologia comporta limitazione nella vita quotidiana dei soggetti che ne sono affetti, alterando la qualità di vita.

SCOPO: Lo scopo del nostro studio è quello di descrivere l’esperienza di vita dei soggetti affetti da glaucoma

METODO: una metodologia fenomenologica è stata utilizzata per questo studio

RISULTATI: Dall'analisi delle interviste sono emersi sei temi principali: (1) un profondo cambiamento nello stile di vita, (2) la diagnosi casuale, (3) la ricerca indipendente, (4) la paura della cecità, (5) la paura di essere un peso per la famiglia e (6) la paura di patologia familiare. Due temi aggiuntivi sono apparsi: i soggetti si sentivano “fortunati di non avere una malattia mortale” e “incerezzai circa il futuro”.

CONCLUSIONI: Gli aspetti negativi prevalgono su tutte le sfaccettature positive. Una profonda comprensione di queste esperienze può aiutare gli operatori sanitari a fornire una corretta assistenza olistica ed a ideare programmi educative specifici.

Parole chiave: Glaucoma, esperienza di vita, studio fenomenologico

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