Affiliations: Research Center Innovations in Care, Rotterdam
University of Applied Sciences, Rotterdam, the Netherlands | Institute of Health Policy & Management, Erasmus
University Rotterdam, Rotterdam, the Netherlands
Note: [] Corresponding author: Anne Loes van Staa, Centre of Expertise
Innovations in Care, Rotterdam University, P.O. Box 25035. 3001 HA Rotterdam,
The Netherlands. Tel.: +31 10 794 41 70; E-mail: a.van.staa@hr.nl
Abstract: PURPOSE: To gain insight into the development of young persons
with chronic conditions towards independence by comparing their lived
experiences to those of their parents. METHODS: Semi-structured
interviews were held with 16 young persons (7 males, 9 females; 15–22 years)
and one of their parents (n=16), asking about the young persons' daily
lives and their development towards adulthood. Themes were deductively derived
from the Skills for Growing Up framework, i.e. agency, living and daily
activities, social and intimate relationships, education, work, leisure
activities, transportation, and healthcare. Parents also reflected on how they
dealt with the child's chronic condition. A paired thematic analysis was
conducted. RESULTS: Parents were often less convinced that their children
could act independently than the young persons themselves. They were concerned
about them and tended to interfere with their daily lives, often to the
annoyance of their children. Also, parents often perceived more barriers in
social participation, while young persons were more positive. CONCLUSION: The perceptions of young persons and their parents clashed on living
independently, intimate relationships, leisure activities, and healthcare.
Young people might benefit from professional support in these domains to help
them strengthen their autonomy and to prevent child-parent conflict and
negative outcomes.
Keywords: Young persons, chronic conditions, parents, transition, lived experiences
