Gaps in transitional care: what are the perceptions of adolescents, parents and providers?

Abstract

Several studies have investigated preferences and experiences of adolescents with different chronic conditions and their parents. Some have included the provider's perspective. Studies comparing the three perspectives on satisfaction with (transitional) care for different chronic conditions, however, are lacking. The main aim of this paper was to explore differences and similarities in perspectives between adolescents with chronic conditions, their parents and providers on transitional care. A secondary aim was to explore the extent to which such perspectives are disease-specific. This quantitative study included 127 adolescents with juvenile rheumatoid arthritis (JRA), neuromuscular disorder with chronic ventilation (NMD), or diabetes Type I; 166 parents; and 19 care providers. To assess the experiences and perceptions of adolescents and parents on transitional care, we used the 'Mind the Gap' instrument. The survey for providers included a checklist of shortcomings in transitional care. Adolescents rate current care significantly worse than parents on opportunities to make their own decisions and be seen without parents present. Adolescents also rated providers' current social skills lower than parents. Adolescents are more satisfied than their parents about transitional care process aspects such as co-ordination and communication between providers, but both groups indicated that the care process offers most room for improvement. Providers reported other aspects such as adolescents' lack of responsibility with regard to self-care and parents' difficulties with ceding control to their children. When looking at the three disease groups - JRA, NMD, diabetes, we found only small differences. According to providers, shortcomings in the care process with respect to guidelines, protocols and co-ordination are most prevalent. Adolescents, parents and providers all report that there is room for improvement with regard to aspects of the care delivery process in transitional care. With respect to disease-specific issues we only found small differences.