GENETIC ALLIANCE
BY CAROLINE SPARTIN
In addition to the myriad of new experiences associated with living independently, those with complex care needs have the added burden of taking over the responsibility of their own care.
Transitioning from a dependent adolescent to an independent adult can be a significant change for most young adults. This journey challenges individuals as they struggle to gain autonomy over their lives. Many move away from home, learning the challenges of daily decision making and independence. In addition to the myriad of new experiences associated with living independently, those with complex care needs have the added burden of taking over the responsibility of their own care. As they shift from pediatrician to adult care providers, they must now manage insurance claims, maintain prescriptions, and schedule appointments for themselves. Already facing the challenge to maintain their health, these added responsibilities can add enormous weight to the difficulties inherent in gaining independence and control over their own lives.
Why is the Transition Especially Important with Complex Care Needs?
Complex care needs include any history of chronic conditions and special needs that require supplementary medical attention and treatment. Complex care patients typically use numerous types of health services and seek care from a greater number of doctors than individuals without these conditions. In addition, an individual with complex care needs may also suffer from functional limitations and require supplemental assistance for activities of daily living (ADL) such as eating, bathing, dressing, toiling, walking, and continence. While navigating around a new city or college campus and building a newfound community, young adults with complex care needs also need to transition from the familiarity of a family pediatrician to an adult-centered practitioner. Although everybody’s transition looks different, young adults with complex care needs must face this transition with the challenge of advocating for themselves, to ensure they receive proper support and accommodations.
What Makes the Transition Hard?
Adult-centered healthcare can be a stark contrast to the personalized care of a pediatrician. Pediatricians are trained to treat and diagnose many conditions that start at birth, or manifest themselves during childhood. Their vast knowledge of the individual’s personal condition can prove to be extremely valuable for a child requiring complex care, and can help boost the confidence of the child and their parents, making them feel as though they are receiving appropriate medical attention. In addition, pediatricians often spend 18 years with the patient and often know them beyond their medical history. Pediatricians are cognizant of their family background and history and are familiar with the individuals aside from their conditions. These factors can help pediatricians to excel in helping their young patients to thrive.
Often, this intimate doctor-patient relationship comes to a halt upon transition. Adults often receive less time with their doctors and express discomfort in having less personalized meetings with their practitioners (Reiss et al. 2005). After spending 18 years building up a relationship with a former pediatrician, this potentially stark difference can be daunting for a young adult with significant healthcare needs. In addition to the loss of the personal connection, they need to deal with the loss of the medical connection as well, as they educate their new doctor about 18+ years of medical history and procedures. This loss of support and familiarity has the ability to pose roadblocks for many young adults with complex care needs.
Working Through the Transition
Mallory Cyr, from the Colorado Department of Health Care Policy & Financing, who has additionally been a longtime advocate for health care transition, says that while the transition to adult centered complex care may be difficult, there are different ways for a parent or guardian to help ease the transition:
1.Start the transition from a young age. More time devoted to easing into the transition will minimize the surprises once the big day arrives. Start early, making sure your child knows the medical terms for their condition and their medications, as well as what their health care needs are. Slowly offer more control and responsibility over their own health as your child matures. Give your child the option to be involved from an early age, but don’t push it if they aren’t ready.
2.Strive for positivity; have confidence in your child. In the world of complex care conditions, negativity often pervades the descriptions of your child’s limitations. Strive to maintain a positive outlook with your child so that they may conquer their future with confidence. Help your child to become autonomous and independent, and trust that they are capable. Even small acts, such as allowing them to be responsible for keeping their own insurance card, will help them to learn and grow.
3.Help your child be their own biggest advocate. Teach your child to be resilient and to ask questions. Encourage them to be their own biggest advocate. Teaching them to advocate for themselves is one of the most useful gifts you can provide your child.
4.Transition your child when the time is right. Know that there is not one age in which this transition is supposed to occur. Children hit milestones at different times. Do not base the “right” time for your child to transition based on chronological age.
5.Break down the barrier that your child must be completely independent post-transition. Let your child know that it is always okay to seek out support, even after they have gone through the health care transition. Becoming independent and having a parent as a trusted partner do not need to be mutually exclusive.
6.Open the lines of communication. Start a dialogue with your child’s pediatrician early about transferring medical records. Ask all trusted sources for recommendations of adult-care providers in the area.
7.Reach out for help when needed. Every family’s transition is different, but parents may learn or get support from other families who have gone through similar experiences.
With the help of her parents giving her the space to grow and be independent, and Mallory’s constant efforts to improve and gain a better grasp over her condition, she was able to move to a different city for college, while restarting her medical process with new doctors and new sources of support. Although Mallory’s story serves as a ray of hope, many individuals struggle to find proper care as they transition from child-centered to adult-centered care for their complex medical conditions. Encouraging a dialogue on changing this dynamic may bring about future progress toward the goal of a seamless transition to adult-centered care for young adults with complex health needs. •
Special thanks to: Mallory Cyr, MPH
Health Policy, Contract, and Disability
Liaison for the Colorado Department of
Health Care Policy & Financing, (207) 576-1980
and Dr. Moire Stevenson, Ph.D.,
Clinical Psychologist, Mackay Rehabilitation
Centre, 1 (514) 488-5552
ABOUT THE AUTHOR:
Caroline Spartin is a rising junior at the University of Michigan studying public health. She is interested in environmental health, genetics, and disease prevention.
