The Lived Experiences of Parents and Healthcare Professionals in Treating Children with Chronic Conditions. Distinct Roles and Common Points of View.

Abstract Research problem and background Scientific development for treating life-threatening illnesses combined with an increase of home-based health support contributed in reducing children mortality but it also increases the number of children suffering from pediatric chronic critical illness (PCCI, approximately 49% of hospitalized children have chronic illnesses). Hospitalizations and recurrent readmissions are dramatic experiences for children and they also have a huge impact on their families. The lived experiences of child with PCCI parents and health care workers (HCW) have been poorly analyzed. When the disease is so severe to prompt an admission to a PICU, the impact on the emotional, clinical, ethics, psychological, and relational spheres of the different actors is very complex and often hard to manage. In this research, both parents and health care professionals were the focus of interest. This study aims to explore the lived experience of child with PCCI parents in the Pediatric Intensive Care Unit (PICU) and the experience of health care workers. Methodological framework This study adheres to a phenomenological–hermeneutic approach, suitable for exploring the meaning of lived experiences. Parents and HCW involved in the research ware recruited through the Pediatric Department of the University Hospital in Verona. The data has been collected by recording and transcribing semi-structured interviews. Data analysis was developed through an inductive and recursive process, aimed to identify the overall sense of the described experiences. Results At the end of the data collection, a total of twenty-two parents (fourteen mothers and six fathers) and twelve healthcare workers were interviewed (six nurses were woman, four clinicians were woman, two clinicians were man). The analysis reveals fifty-six emerging dimensions (33 common and 3 protruding elements for parents, 20 common elements for HCW), among which some eight cross-cutting elements between parents and healthcare professionals, as well as some elements that represent the experiences of each group individually. The author identified as crucial the following eight cross- cutting categories: complexity of decision-sharing, close-quarter attitudes, no one like 5 parents, lack of trust, fear of change, smiling and suffering, what’s best for the child and, finally necessity to trust and be trusted. All those categories are strongly interrelated among them and provide an innovative point of view to comprehend the lived experience of child with PCCI parents and HCW. The analyzed literature (Bry et al., 2016; Huang, Kellett, & St John, 2011; Meert et al., 2008) usually report the experiences gathered from parent or HCP interviews on pre-defined topics, such as communication, quality of life, and end of life. The presence of relevant common thoughts and lived experiences that can bring parents and HCP closer with regard to life experience, is one of the innovated outcomes of this research. These findings should be considered in order to improve the quality of pediatric care and other services for children with chronic illness. Setting and Ethical considerations The author worked in the unit where data were collected and, this insider status has allowed her to access directly to the research setting and recruit potential participants. This information was presented to all participants firstly during the introduction of the study and secondly at the informed consent process. The institutional ethic committee approved the study’s before starting the recruiting process approval code 976CESC (Comitato Etico per la Sperimentazione Clinica delle provincie di Verona e Rovigo).