My Kidney Guide! Building Self-Management Skills for Teens with Chronic Kidney Disease

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Driving a car, getting a job, managing money: increasing independence is a hallmark of the transition to adulthood. Most people remember these first steps into becoming an adult, but few remember the first time they made a medical appointment or managed taking multiple medicines. For adolescents who have a chronic medical condition such as chronic kidney disease (CKD), these self-management skills are essential for supporting their independence and maintaining their health.

What are self-management skills? They are the choices and behaviors people use to manage their health and improve outcomes. The importance of developing strategies and skills for self-management cannot be overstated. For teens and young adults who struggle to balance the demands of school, peer relationships, and self-discovery, managing a chronic health condition is not always a top priority—especially if they do not feel symptoms, which is common in CKD. Historically, treatment adherence in teens and adolescents is low. For youth who have CKD, nonadherence can have devastating consequences, notably renal failure or kidney transplant rejection.

Historically, treatment adherence in teens and adolescents is low.

My Kidney Guide

3C Institute has a solution to low adherence: My Kidney Guide, a self-paced e-learning program designed specifically for teens and young adults with CKD (including youth with End-Stage Renal Disease). The program teaches teens and young adults self-management skills and strategies that prepare them for the transition from pediatric to adult health care and for the responsibility of making their own health decisions. Our team is a multidisciplinary collaboration among experts in pediatric nephrology, pediatric health care transitions, pediatric and adolescent mental health, and technology-based behavior change interventions.

A mountain with a path charted from the base to the top, with a flag at the top that reads "being in charge of your own life." In the bottom right corner, a box includes the word "self-management."
My Kidney Guide helps teens take charge of their lives, preparing them to make their own health decisions.

For programs to work effectively, they must get input from the people who will use them. To that end, we are partnering with teens and young adults to find out what skills they need to manage their medical health. We are also talking to parents, many of whom need more support with guiding their children’s development of self-management skills and with letting go of the responsibility of overseeing their children’s health decisions. My Kidney Guide offers something for the whole family.

My Kidney Guide offers something for the whole family.

Through those conversations, consultations with the health care workers serving youth with CKD, and an in-depth review of current research, we have identified several key areas to address. These areas include coping, self-management and self-advocacy, medicines and medical appointments, and planning for the future—all of which address the practical, social, and emotional aspects of life with CKD. But our work doesn’t stop there. As we develop program content, we discuss it with teens and their parents to determine its usefulness.

My Kidney Guide integrates self-management skills, self-awareness components, and developmentally appropriate information about CKD in an engaging e-learning program. My Kidney Guide also includes a module for parents that provides a roadmap for building these skills in children. For youth with CKD, maintaining their health is a lifelong process, making effective strategies to increase treatment adherence not only valuable but also vital.

A golden disk surrounds a boys head as he practices a coping technique.
Coping is one of many strategies taught in My Kidney Guide.

What Can I Do Today?

If you are a youth with CKD, a parent of a youth with CKD, or a health care provider, and you would like to get involved in the ongoing research and development of My Kidney Guide, contact Dr. Deb Childress today!

Deb Childress, PhD, Suzanne Messina, MA, and Edie Lindley are part of the My Kidney Guide research and development team at 3C Institute. Maria E. Diaz-Gonzalez de Ferris, MD, MPH, PhD, is a professor of general pediatrics and adolescent medicine at the UNC School of Medicine. My Kidney Guide is funded in part by a SBIR Phase II award from National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). 



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    Chief of Research and Learning Content


    Dr. Childress obtained her PhD in psychology at the University of North Carolina at Chapel Hill. Prior to coming to 3C Institute, she served as a research associate and a postdoctoral fellow in the Carolina Institute for Developmental Disabilities at the University of North Carolina at Chapel Hill working on a longitudinal imaging study aimed at identifying the early markers of autism through behavioral and imaging methodologies. She has 19 years of autism research experience, during which she has examined the behavioral, personality, and cognitive characteristics of individuals with autism and their family members. Dr. Childress also has experience developing behavioral and parent report measurement tools, coordinating multi-site research studies, and collecting data from children and families. She has taught courses and seminars in general child development, autism, and cognitive development at the University of North Carolina at Chapel Hill.


    • autism
    • early development
    • behavioral measurement
    • integrating behavioral and biological measurement


    • Postdoctoral fellowship, Carolina Institute for Developmental Disabilities (Institutional NRSA-NICHD), University of North Carolina at Chapel Hill
    • PhD, developmental psychology, University of North Carolina at Chapel Hill
    • BS, psychology (minor in sociology), University of Iowa

    Selected Publications

    • Elison, J. T., Wolff, J. J., Heimer, D. C., Paterson, S. J., Gu, H., Hazlett, H. C., Styner, M, Gerig, G., & Piven, J. (in press). Frontolimbic neural circuitry at 6 months predicts individual differences in joint attention at 9 months. Developmental Science.
    • Wassink, T. H., Vieland, V. J., Sheffield, V. C., Bartlett, C. W., Goedken, R., Childress, D. & Piven, J. (2008). Posterior probability of linkage analysis of autism dataset identifies linkage to chromosome 16. Psychiatric Genetics,18(2),85-91.
    • Losh, M., Childress, D., Lam K. & Piven, J. (2008). Defining key features of the broad autism phenotype: A comparison across parents of multiple- and single-incidence autism families. American Journal of Medical Genetics (Neuropsychiatric Genetics), 147B(4):424-33.
    • Wassink, T. H., Piven, J., Vieland, V. J., Jenkins, L., Frantz R., Bartlett, C. W., Goedken, R., … Sheffield, V.C. (2005). Evaluation of the chromosome 2q37.3 gene CENTG2 as an autism susceptibility gene. American Journal of Medical Genetics (Neuropsychiatric Genetics), 136, 36-44.
    • Barrett, S., Beck, J., Bernier, R., Bisson, E., Braun, T., Casavant, T., Childress, D., … Vieland, V. (1999). An autosomal genomic screen for autism. American Journal of Medical Genetics (Neuropsychiatric Genetics), 88, 609-615. doi: 10.1002/(SICI)1096-8628(19991215)88:63.0.CO;2-L
    • Piven, J., Palmer, P., Landa, R., Santangelo, S., Jacobi, D. & Childress, D. (1997). Personality and language characteristics in parents from multiple-incidence autism families. American Journal of Medical Genetics (Neuropsychiatric Genetics), 74, 398-411.
    • Piven, J., Palmer, P., Jacobi, D., Childress, D. & Arndt, S. (1997). Broader autism phenotype: Evidence from a family history study of multiple-incidence autism families. American Journal of Psychiatry, 154, 185-190.