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BACKGROUND There is a considerable variability among European countries regarding the management of end-of-life (EOL) care in the pediatric critical care setting. In Italy, recommendations on these issues are available but no study has investigated the parents' experience. The aim of this study was to explore parents' experience of EOL care in a Pediatric(More)
OBJECTIVE In approaching the study and practice of heart failure (HF) management, authors recognise that the patient-doctor relationship has a central role in engaging patients in their care. This study aims at identifying the features and the levers of HF patient engagement and suggestions for orienting clinical encounters. DESIGN Using a grounded theory(More)
Sudden unexpected death in epilepsy (SUDEP) is a syndrome where a person with epilepsy dies suddenly and no other cause of death is found. The question of informing patients and their families about SUDEP remains a problematic issue. The aim of this study is to explore whether Italian physicians interested in epilepsy believe that they should discuss SUDEP(More)
GOAL Major cross-cultural differences in truth-telling attitudes and practices have been demonstrated. Until recently, in Italy the doctor could conceal both diagnosis and prognosis to seriously ill patients out of beneficence. Signs of change have been reported, but the extent and way patients would be informed is still unknown. The aim of the study was to(More)
OBJECTIVES Patients' lived experience of illness and health is receiving increased attention in the medical field. Understanding patients' perspective and experiences is an undoubted asset for efficient health interventions and improved clinical concordance. Patients' experiences of care and cure, however, are influenced by the cultural setting in which(More)
BACKGROUND The aim of the study was to explore the illness experience of individuals affected by phenylketonuria (PKU) and its differences in different patient age groups. METHODS A qualitative-interpretative methodology was used through in-depth interviews. Textual data were explored using the principles of grounded theory. RESULTS Forty-seven patients(More)
OBJECTIVE The aim of the present study was to explore (1) how and with which specificity the young patient contributes to the visit; (2) the communicative-relational manner with which adults handle the child's interventions. METHODS Ten videoed visits with patients aged 2-6 years were selected. A content and discourse analysis was realized. RESULTS(More)
Patients' engagement in healthcare is at the forefront of policy and research practice and is now widely recognized as a critical ingredient for high-quality healthcare system. This study aims to analyze the current academic literature (from 2002 to 2012) about patient engagement by using bibliometric and qualitative content analyses. Extracting data from(More)
OBJECTIVE To examine how patient-centredness is understood and enacted in an American (US) and an Italian group of health care professionals. METHODS An action research methodology was used. Two interprofessional groups of US (n = 4) and Italian (n = 5) health care professionals independently wrote a patient-centred dialogue between a doctor and a patient(More)
The aim of the study was to analyze the difficult doctor-patient relationship from a doctor's perspective. A qualitative-interpretative approach was employed to analyze representations of difficult visits collected by means of written narrations. Two main scenarios were identified: (i) a 'personal scenario' in which the doctor had difficulties from a purely(More)