'Down the rabbit hole': enhancing the transition process for youth with cystic fibrosis and congenital heart disease by re-imagining the future and time

Abstract

Background: Although the transition from paediatric to adult clinical care is an important one, the process is far from seamless. Little is known about the transition experiences of youth with cystic fibrosis (CF) and congenital heart disease (CHD).

Method: Informed by the new social studies of childhood, this qualitative study adopted a thematic analytical approach in order to explore how 50 youth and 28 parents affected by CF and CHD at a large children's hospital in Canada negotiate constructions of 'normal developmental time'--in both anticipating and dealing with the transition from adolescence to adulthood.

Results: Illness appeared to render the future as an uncertain terrain for youth living with CF and CHD. Concerns related to deteriorating health and occupational restrictions in the future were paramount for these youth. For young women with CF and CHD, the loss of 'normal' gendered roles--such as motherhood--was also a distressing future concern. For youth living with CF and their parents in particular, time was thought to be stolen and the future was abbreviated. Despite these seemingly anxiety-inducing experiences, youth and their parents demonstrated considerable creativity as they devised strategies to deal with the future and stolen time.

Recommendations and conclusion: In addition to challenging ideological assumptions about developmental time which may alienate youth with chronic illnesses, the results from this study suggest that attending to youth's temporal anxieties and future concerns may ultimately enhance the transition process for youth with CF and CHD.