THE CKD PARENT-YOUTH PROJECT
Principal Investigator: Maria Ferris, MD, MPH, PhD
Sponsors: Renal Research Institute
Description: The CKD Parent-Youth Project aims to provide the best quality health services to children, adolescents and young adults with CKD and improve their outcomes.
In previous work and despite what we have anticipated, we learned that the parents of patients with several kinds of chronic conditions are their children’s main source of health education. If this is the case for youth with CKD, how much do parents know about this condition? How do parents and patients like to learn about CKD? And how does parenting style affect how their children learn to manage their disease?
Our specific aims are:
1. To characterize the level of knowledge about CKD and its management among parents of youth with CKD and its relationship to their child’s health outcomes. Hypothesis: Parents whose child with CKD was diagnosed at a younger age will have greater knowledge about this condition/management and their child will have better health outcomes (e.g. less emergency room use and greater prescription refill rates).
2. To characterize youth with CKD and their parent’s preferred platform to learn about this condition. Hypothesis: Younger participants will prefer electronic-related learning platforms
3.To correlate the parenting styles of parents of youth with CKD to their child’s self-management skills. Hypothesis: Youths raised by an authoritative parenting style have greater self-management skills
Parent-patient dyads will undergo several questionnaires that will address these yet unanswered questions by the literature. Our mixed methodology approach will include the use of quantitative and qualitative analysis.
Patients must meet all of the following criteria:
1. Consecutive youth with CKD ≥ 2, ages 8 to 21 and their parents
2. Diagnosed > 3 months prior to the study
3. Able to read English
Patients with developmental delays as deemed by the provider will not be eligible for recruitment.
For more information, please contact:
Maria Ferris, MD, MPH, PhD