UC Irvine

Background: Advances in medical care and treatment options have extended the life expectancy of millions of youth with chronic conditions. This change in prognosis has led a majority of these youth to eventually transition from pediatric to adult medical care. This transition can be difficult as evidenced by declines in adherence after transitioning as well as reported struggles between parents and youth. Less is known about how specifically parents and youth prepare for adulthood or about the beliefs they have around becoming an adult with a chronic condition. What are parents thinking about for their children as they teach them to manage their condition?

Method: This mix-method study used survey and interview data from families receiving care at a pediatric cystic fibrosis clinic. All eligible primary caregivers completed an online survey during a routine clinic visit. The full sample consisted of 38 parents while a sub-sample of 9 parents were randomly selected and took part in a phone interview.

Results: Parents reported a variety of important skills such as medication and treatment related skills as well as their worries with compliance being the most commonly discussed parental worry. Parents are doing a variety of things to address their skills and worries, with talking and teaching being the most prevalent reported behaviors. They reported on their child’s ability at specific tasks and the value they had for each task. Parents also discussed many factors that influence what they are doing around self-management and what successful management meant to them.

Conclusions: Understanding the beliefs, worries, and behaviors of parents has major implications for thinking about transitioning such as the role parents play as teachers/supporters. Healthcare professionals now have a more nuanced way to think about what families are doing in order to provide more effective resources and support to families.