Lorenza Garrino1, Simona Amato2, Cristiana Tinari3, Elisabetta Bignamini3, Valerio Dimonte1 - 1. Dipartimento di Scienze della Sanità Pubblica e Pediatriche, Università degli Studi di Torino; 2. Corso di Laurea in Infermieristica, Università degli Studi di Torino; 3. Centro Regionale di Riferimento Diagnosi e Cura della Fibrosi cistica; SC di Pneumologia, AOU Città della Salute e della Scienza di Torino, Presidio OIRM
This research aims to analyze the experiences of parents of children with cystic fibrosis and their difficulties at both a personal and family level with their life change due to the disease and the support received during the pathway of care. The research has been conducted through a qualitative survey. Six narrations were collected by parents of children with cystic fibrosis cared for at the Regional Centre for Diagnosis and Therapy of Cystic Fibrosis, AOU Città della Salute e della Scienza-Presidio OIRM S. Anna di Torino. The interviews were recorded and then transcribed. Data were analyzed using Giorgi phenomenological method. Five recurrent themes emerged: the awareness of the disease, the consequences of the illness for the child, the disease in relation to their own lives, social support and the vision of life. Respondents pointed out how emotions and feelings as stress, fear, helplessness and guilt and loneliness characterize their experience as parents. Dealing with their child’s disease involves having to constantly refer to difficult situations and decisions, a change of identity and also of parents work, with the need for an emotional support. The sense of responsibility, hope, a vision of future and faith support their efforts. The knowledge and awareness of the different aspects that characterize the experience of parents of children with cystic fibrosis gives professionals part of the group care the good information required for a constant dialogue with these families.