Caring for chronically ill children

How to make a smooth transition from pediatric to adult care

Over the last two decades, the number of children in the United States with chronic illnesses has dramatically increased.  According to one study, chronic health conditions in children rose from 12.8 Percent in 1994 to 26.6 percent in 2006.  New advances in technology and medicine have allowed these children to lead longer, more fulfilling, and independent lives than in the past.  There are constantly new medications, treatments, and equipment being developed that can help children with disabilities in their day to day lives.  With this extended length and quality of life, many emerging adults with chronic illness must face the difficult undertaking of transferring to adult health care.  The teenage years are already a trying time for all children and this extra task can be very stressful if it is approached suddenly.  These children will have a much easier time transitioning if they are provided guidance and preparation from their parents and health care providers.  A smooth transition requires planning ahead, multi-disciplinary collaboration, and the active involvement of children in their own care.

Planning should begin by taking steps to promote the child’s cognitive, physical, and psychosocial developmental potential during middle childhood, or 4 to 10 years of age. Simple steps such as encouraging independence, responsibility, and social interaction can be very beneficial.  Although the child may have health issues that limit certain aspects of their life, it is important not to treat them as “special” or different from other children. Research has shown that children with special needs who are given responsibilities, such as household chores, are more likely to be self-sufficient and gainfully employed.  It is also crucial to promote their participation in their own care, even if it is something as simple as brushing their own teeth or administering their own medication.  Parents should encourage these activities and oversee them so that they can provide guidance and make sure that the child is performing the task properly.    

The next step that can be taken to promote the development of children with disabilities is to encourage them to make their own decisions and to be proactive about their own safety and well-being.  The ideal time to employ this strategy is during early adolescence, when the child is 11 to 14 years old.  Although it may be difficult at times, parents should try to minimize over-protectiveness and to support, rather than fight their child’s efforts to be more independent and self-reliant.  At this time, it is also helpful for the child and their parents to collaborate with their pediatric care providers to develop a transition plan with specific goals, including health care related tasks and activities.  The plan should also include an estimation of when the child is intended to begin the transition to adult care.  The child’s chronological age, developmental age, and the age that their pediatric providers discontinue care should be taken into account when deciding the time to transfer them to adult care. 

Once the child has reached 15 to 17 year of age, they should be encouraged to spend more time alone with their health care providers.   At this age, it is important to help them to gain confidence, health awareness and knowledge, the ability to self-advocate, and to act independently.  They should be encouraged to spend time alone with their care providers without parental supervision.  Working more closely with their health care provider will allow them the opportunity to ask questions in privacy and to become more skilled in their own care.  This is also a good time to discuss the child’s goals and expectations for their future so that parents can work with their health care providers to assist them in achieving them.  Planning should also include options for health insurance and how age, school, and employment may affect the child’s eligibility. 

It is extremely important to remember that all children are at different developmental stages, regardless of how old they are.  Depending on the nature and severity of their chronic illness, some of these steps may not be practical to use.  Not all children will be able to independently care for themselves and each child and their capabilities should be taken into account individually.  In these situations, it is helpful to address other issues with the health care team such as who will be the child’s legal guardian, what kind of care they may require, expectations for the child in the future, and if necessary, legal support.  Ideally, these issues should be settled before the child turns 18 in order to prevent any interruptions in their care.

Once the child has reached the age of 18, they may be ready to actively transfer to adult care.  This may be done sooner or later depending on the policy of their providers and the child’s independence level.  The actual process of transitioning may take time and several trials with different adult providers may be necessary.  It is likely that the child and their family have become very close with their pediatric practitioners after working with them over the years and it may be difficult for them to even think about continuing care without them.  It is important to remember that a transition to adult care does not necessarily mean that they have to cut ties with their pediatricians altogether.  In fact, their pediatric specialists may still provide care even though they have decided to progress to an adult primary care practitioner (PCP). 

To ease the process, once the child is ready to begin transitioning to adult care, their pediatric providers should be asked to make a referral to an adult PCP.  They may be able to make valuable suggestions for other providers who are experienced at managing any illnesses that the child may have.  The pediatric health team should also be asked to transfer the child’s health records and to develop a summary report of their health history so that their new PCP can get to know them and what measure of care they will require.  It is acceptable for the child or their parents to feel that a PCP is not a good fit and to “shop around” until they find one they are comfortable with.    This is very important because adolescents will be more likely to continue regular health care visits if they are satisfied with their adult PCP.  The parents and child should try to remember that transitioning from pediatric to adult care is a process that will take planning, time, support, and resources.  One helpful organization that they may want to refer to is “Got Transition” (www.GotTransition.org).  They provide information and education about what to expect, what questions to ask, and what parents can do to ease the transition for their child.  

Ideally, the child’s pediatric team will have a protocol in place to help with the transition and be prepared to offer resources along the way.  Unfortunately, every hospital and health care practice is different and such resources may not exist.  At this time, there is no universal policy or widely accepted transition process that health care providers use.  As more and more chronically ill children are reaching adulthood, it is likely that more support services and practice guidelines backed by research will emerge.  Until these important practice guidelines are developed, the previously mentioned strategies can be used to help guide the child and their family through the process of progressing to adulthood and managing their own health care.

Amber Grinnell BS, BSN, RN, CCRN  is currently a pediatric critical care nurse at Children's Hospital of Pittsburgh and pursuing a masters degree as a family nurse practitioner at Carlow University.

References

• Harris, M. A., Freeman, K. A. & Duke, D. C. (2011). Transitioning from pediatric to adult health care.American Journal of Lifestyle Medicine, 5(1), 85-91. Retrieved from http://www.medscape.com/viewarticle/738852_print
• Lowry, F. (2010, February 16). Prevalence of chronic illness in us kids has increased. Retrieved from http://www.medscape.com/viewarticle/717030
• Reiss, J. (2012). Health care transition for emerging adults with chronic health conditions and disabilities. Pediatric Annals, 41(10), 429-435.