Chiara Tosin
University of Verona, Italy
Title: Wait and entrust, the ethics of listening in a PICU- a qualitative research on lived experience of children and parents
Biography
Biography: Chiara Tosin
Abstract
Scientific development for treating life-threatening illnesses combined with an increase of home-based health support has contributed in reducing children mortality rates but it also increases the number of children with chronic condition (approximately 49% of hospitalized children have chronic illnesses). Hospitalizations and recurrent readmissions are dramatic experience for children and they also have a huge impact on their families. There are no evidences focused on lived experiences of chronic ill children and their parents. This study aims to explore the experience of children with chronic disease in PICU and the experience of their parents. This study adheres to a phenomenological–hermeneutic approach, suitable for exploring the meaning lived experiences. Children and parents involved in the research are recruited through the Paediatric Department of the University Hospital of Verona. Data are collected by semi-structured interviews and data analysis is developed through an inductive and recursive process, aimed to identify the overall sense of the described experiences. The analysis reveals four emerging dimensions: experiences, elements of value, problems and suggestions. Within these dimensions, I identify some common elements and some “protruding” elements that emerged as particularly relevant. They reveal that parents frequently a) experience miscommunication, b) are silenced c) feel the need to trust medical care providers. Children frequently described a) a particular mother’s proximity during hospitalization, b) hope. These findings should be considered in order to improve the quality of paediatric care and other services for children with chronic illness.