AboutKidsHealth.ca, leading online Canadian source for children’s health information, looks into what steps parents of children with chronic conditions can take to help them transition into adulthood taking charge of their own health.
Not long ago, it used to be that most children born with spina bifida would not survive to age 20. The condition, in which the spinal column does not close properly before birth, has several types and can create devastating problems. Over the decades however, surgery has helped improved both survival and the quality of life of these patients. Today, most children born with spina bifida will live full lives.
As the child turns into an adolescent and ultimately an adult, the responsibility of managing their condition, medication and appointments will shift from parent to patient, and these patients may not know how to cope.
As more and more children with chronic conditions, such as spina bifida or congenital heart disease, survive into adulthood, the more the health care team has recognized the need to prepare patients to take responsibility for their health as young adults. Studies showed many were not making it to appointments and the quality of their health was going down. In general, it was a lack of adherence to treatment rather than lack of treatment options that was the impediment. In some cases, these came with devastating consequences for their health.
Preparing children for transition should begin at latest in early adolescence: the tween years. At that time, parents should begin shifting their involvement in their child’s health and care. This may mean getting the child to book his or her own health care appointment and then seeing the health care provider alone. Tweens should start practicing asking doctors questions to increase their comfort level, and parents should encourage them to keep track of appointments and results.
Based on the ‘shared management model’ of health care developed in Seattle a decade ago, the Good 2 Go Transition program is designed to help patients with different chronic conditions take ownership of their own healthcare. It provides evidence-based tools and advice to parents, clinicians, and adolescents on how to gradually shift responsibility and make a successful transition to adult care, as well as aiding with other areas, such as helping teens practice speaking about their condition in a way which is both concise and effective.
While the Good 2 Go program and others like it are comprehensive, research to find best practices for transition to adult care is ongoing. And it’s a two-pronged approach: the professionals involved in this work are also aiding adult health care providers prepare to take care of these patients, creating champions for them on the other side.
Written by Dr. James G. Wright, MD, MPH, FRCSC, Surgeon-in-Chief, Robert B. Salter Chair of Pediatric Surgical Research, and Senior Scientist, Population Health Sciences at The Hospital for Sick Children (SickKids). He is also a professor in the Departments of Surgery, Public Health Sciences, and Health Policy, Management, and Evaluation at the University of Toronto.
Please visit http://www.aboutkidshealth.ca/En/News/Columns/SurgeonsCorner/Pages/Avoid-becoming-a-victim-of-your-own-health-success.aspx to read the original article, or AboutKidsHealth.ca for additional children’s health resources
AboutKidsHealth.ca is the leading Canadian online source for trusted child health information, and has a scope and scale that is unique in the world. Developed by SickKids Learning Institute in collaboration with over 300 paediatric health specialists, the site provides parents, children, and community health care providers with evidence-based information about everyday health and complex medical conditions, from second-hand smoke to spina bifida. AboutKidsHealth.ca adheres to rigorous quality standards for the creation and review of health information.
Visit www.aboutkidshealth.ca to find out more.
For more information, please contact:
Sue Mackay, Communications
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