Transition of Care - Parent-child interactions

Long-term follow up programs for children born with a congenital anomaly usually happen alongside the child's key developmental milestones. Indeed, clinicians are to guide patients from the neonatal stage to adulthood. Although it's normal to address the parents during the first years of life, patient involvement and self awareness should be considered from an early stage. Patients should be informed about their own medical condition, so that they can recognize problems in line with their developmental age. This is paramount to obtain intrinsic motivation and to empower the child. From a practical point of view, during outpatient evaluations, questions should be addressed directly to the child, and as he or she grows older, focus should switch from parental to patients and parents' needs. Alongside this, explaining the upcoming treatment plan and expected responsibilities to the patient will help him or her understand the need for follow up and why it is important to seek for medical care if needed. Asking for help can be difficult. Especially when it comes to adolescents coping with problems that can be embarrassing or are considered a taboo, bowel irrigations in patients with colorectal anomalies are a clear example. Clinicians should teach children and adolescents how to ask for help, notwithstanding their need for independence and freedom. The ultimate goal is to lead the patient to become independent in a safe and predictable environment. At the same time, some parents need guidance in when and how to let go, and understanding that their child seeking and reaching independence is a normal part of development, and that progressively taking care of their own morbidities is a natural process, as is learning to brush their teeth or tie their shoelaces. To better guide patients in their journey towards independence, clinicians and parents can encourage them to formulate some questions to ask during their next or upcoming outpatient appointment. By doing so, children will start reflecting on the reasons why they have to go to the hospital and on their inner doubts with reference to their congenital anomaly. Furthermore, this can trigger a conversation between child and parent, concerning the disease itself and past hospital experiences. Dedicated questionnaires such as Ready Steady Go are available for adolescents and serve as a guideline to assess self awareness and readiness for taking care of their own health. An additional step would be to spend some time at the outpatient evaluation alone with the patient. This 1 to 1 approach encourages the patient to have direct contact with the clinician while still being in a friendly and well known environment before being transitioned to the adult department. Additionally, embarrassing topics or aspects that can be difficult to discuss with parents can be addressed. Parents should receive an explanation on why discussing certain topics with the patient alone is important, so that there will be no conflict between parents and the child. At the same time, clinicians must acknowledge the parents' role in the decision making, their knowledge and their role in the patient's life. Taking care of a child with a congenital anomaly can be stressful for a number of reasons, and some parents may become overprotective. At the time of transition, parents need to learn how to transfer their knowledge to their children. And clinicians need to be aware of their role and position. Referral of parents to support groups might be helpful. Lastly, it is extremely important that parents and clinicians are able to identify and meet the patient's needs. however, it is just as important to be able to recognize when help is no longer needed and step back. This helps children to gain their independence and can help them become more confident to do things on their own, like managing their bowel irrigations in order to go out with friends or to go camping. Finding a moment to discuss these social life aspects with both patient and parents might help patients to identify the methods that fit them best and figure out how to best cope with their disease.