Evidence Based Practice Symposium - McMaster University

Parental resistance to letting their youth become more independent during the transition to adult services is often
cited as a barrier to transition; however, parents are a source of valued social support, and the transition process does
not acknowledge the support and interdependencies frequently found in youth-parent relationships (Allen et al.,
2011).
Methods
A qualitative phenomenological approach was used to explore the experiences and perceptions of youth
and their caregivers about the Youth KIT© and TRACE mentor in helping the youth transition from pediatric to
adult services. Youth already enrolled in the TRACE 1 or TRACE 2 study and their caregivers were recruited for
interviews. A total of eleven youth and seven caregivers agreed to participate in semi-structured interviews
concerning their experiences and perceptions with the Youth KIT© and TRACE mentor. A conventional inductive
content analysis process was used for data analysis.
Results
The study resulted in 9 superordinate themes: About the study: This study found that although the
participants appreciated the availability of the services and supports, these two interventions were not used to their
full capacity. Experiences: Many of the participants were going through multiple transitions and experiences in their
lives. Supports and barriers: The participants reported social, cultural, physical, institutional, transportation,
information, and temporal factors as both supports and barriers for their transitions. Self-management: The majority
of youth reported that they were independent in managing their medical needs and that they saw themselves
becoming more independent in decision-making and directing their own care in the future. Parental role: Many of
the youth continued to receive assistance from their parents. Many parents also reported an understanding and
willingness to allow their youth to become more independent. Perceived need: The majority of participants reported
that although they felt the Youth KIT and online mentor were useful and well organized, they didn’t see a need for
the two resources. They thought it would be better suited for individuals with more significant disabilities or who
lacked supports. Recommendations: The participants recommended having the interventions available through
different mediums, such as a mobile phone application; they also recommended that they be more personalized to
individual needs; and education should be provided to the parents and youth at an earlier stage, prior to transition.
Overarching themes of transition: Multiple transitions were occurring while the youth were transitioning into the
adult health care system including beginning post-secondary school, which seemed to be more of a priority for most
youth.
Conclusions/ Future Directions
This study demonstrates that participating youth and their caregivers did not find the Youth KIT or TRACE
mentor useful in assisting the youth to transition to the adult health care system, although benefits were noted
regarding the assistance provided for other general life transitions. The study also demonstrates the complexity of
the transition including the interdependent relationship between parents and their youth, the perceived need of the
tools during the transition, and the ‘behind the scenes’ support and role that parents play throughout young
adulthood. The Youth KIT and TRACE mentor tools would benefit from revisions based on youth and caregiver
recommendations to improve their utility during the transition from pediatric to adult health care services.
References
Allen, D., Channon, S., Lowes, L., Atwell, C., & Lane, C. (2011). Behind the scenes: The changing roles
of parents in the transition from child to adult diabetes service. Diabetic Medicine, 28, 994-1000.
CanChild: Centre for Childhood Disability Research (2012). TRansition to Adulthood with Cyber guide
Evaluation (TRACE). Retrieved February 29, 2012. from http://www.canchild.ca/en/ourresearch/trace.asp.
Gorter, J. W., Stewart, D., & Woodbury-Smith, M. (2011). Youth in transition: Care, health and
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Grant, C., & Pan, J. (2011). A comparison of five transition programmes for youth with chronic illness in
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