Paediatric nurses? perception of the child-family dyad?s autonomy in managing a chronic disease situation: the experience of an Italian Paediatric Department


Introduction. Chronically ill patients have to take several medi- cations and non-adherence to treatment can lead to severe and negative outcomes. Therefore, several interventions are sug- gested in literature to improve adherence rates in clinical prac- tice. Adherence to treatment can be particularly troublesome in adolescents, who strive for autonomy and self-care independence. Literature suggests that improving adherence is useful to guaran- tee positive outcomes and reduce costs. Aim. To explore how nurses perceived autonomy in parents, adolescents, and children related to the management of chronic disease. Materials and methods. A qualitative study including 1 focus group and 7 semi-structured interviews conducted between September 2011 and October 2011. The qualitative date were ana- lysed with the thematic analysis method. The sample included 12 paediatric nurses working in a Children?s Cystic Fibrosis Unit and Neuromuscular Disease Unit. Results. The 5 main categories that emerged from this qualita- tive study after he process of categorization were: ?Changes in daily lifestyle?, ?Nurses? attitude towards educating the dyad?, ?Adolescence and transition?, ?Parents? attitudes towards chronic disease?, and ?Availability of information?. Discussion. Correct information and education is crucial for fam- ilies who have a chronically ill child. Internet can be a mislead- ing source of information and provide wrong information also in relation to prevention.