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Your child’s team, including their primary physician and specialists, can connect you to their adult medicine counterparts to initiate and guide the transition of care. A social worker or palliative care clinician is also a good resource for guidance.
Adult Medical Care
ESP Share
During the course of your child’s life, you and they may have developed close relationships with pediatric clinicians. Now, as your child matures, you will likely need to identify clinicians who care for adolescents and adults. Transitioning your child’s care and building a new team is a process that may take some time and planning. If your clinicians don’t immediately raise this topic, you may wish to ask and to request their ideas and support.
ESP New Challenges
Parenting is a lifelong process, particularly for parents whose child’s chronological age may not correspond to their developmental age. New challenges emerge as your child matures, growing older and physically bigger. You may find that some clinicians are not prepared to handle their medical needs exhibited as a result of complex pediatric-onset conditions. There will likely be fewer integrative therapies (music, massage, play) and limited community resources and psychosocial support in adult care compared to pediatric care. Pediatric clinicians may also raise concerns about their ability to continue caring for your child, or you may have your own questions.
Planning for Transition
Most experts recommend starting discussions with your child’s primary team when your child is between 14 and 16 years old. Some of the issues to explore with your child’s current clinicians as you are making the transition are:
- Is there an upper age limit for your child to be cared for by the pediatric medical practice?
- Is the clinician willing to continue treating your child beyond the normal age limit? Is that a good idea?
- Does your pediatric hospital or clinic continue to provide visits for adult patients, and does this practice differ from specialist to specialist? Are there rules limiting the age an adult is accepted for specific treatments and procedures?
- Who are the adult providers who may have the expertise in the multiple conditions, or comorbidities, your child experiences, but not necessarily the expertise in the underlying disease?
- What assistance does the pediatric medical office provide for the transition? Will your child’s pediatrician or specialists recommend clinicians, perhaps stay involved for a time after transfer of care, and answer questions or confer with the new clinicians?
- Can there be overlap between pediatric and adult clinicians for any period of time?
- Will the new clinician help you keep your adult/child front and center for research opportunities and/or new treatments that might become available?
Also, investigate medical transition resources; for example, a transition to adulthood program at a local children’s hospital that is inclusive of the needs of fully dependent adult-child.
Ask your child’s pediatrician to prepare a portable health summary and emergency care plan that can be shared with new clinicians. The process of transitioning may happen one clinician at a time, or it may be accelerated by events like a referral to a new specialist at a different hospital leading to many new connections at once. You will want to be prepared for these transitions to occur as smoothly as possible.
ESP You will likely experience both logistical and emotional challenges as your child ages out of the pediatric health system. Take time and have conversations with your child’s care team, and with new potential clinicians, to decide what is in your child’s and family’s best interest. Discussions about what you value in caregiving, your child’s health trajectory and quality of life, and any hopes and concerns you have as you acknowledge that this life change will impact your entire family, can help you clarify and express your goals.
It will take time to establish mutual trust and understanding with the new clinicians. You may experience grief at the loss of services, a great deal of frustration, and even anger. This is understandable and normal. In time, though, you may also begin to understand some of the benefits of transition to adult clinicians. These may include facilities and equipment designed for adult-sized patients, teams with expertise in recognizing and addressing adult-onset health and hygiene issues, and new perspectives on your child’s condition and treatment options.
ESP There are positive aspects to transitioning to adult health care:
Age-Appropriate Interventions
There are medical and logistical risks of having an adult patient stay in a pediatric setting. For example, there can be adult-onset health and hygiene issues that may not be recognized or addressed by a pediatric clinician.
New Perspectives
Establishing a relationship with new clinicians can offer a different perspective on your child’s condition and therapeutic options.
Treatment Options
There are treatment options for adults that are not offered in pediatrics, and clinicians who treat adults are experts in adult health and relevant treatments and interventions.
