Published on in Cardiac Connection
By: Eden Van Alstine, MS, CCLS
As a caregiver, finding ways to implement routine, structure and autonomy for your child can often fluctuate between going smoothly and posing lots of challenges. Although these can be tough to implement, the benefits can be substantial for children over time. When you become the parent or caregiver of a child with a chronic illness or specialized individualized needs, it can be even more challenging to manage these practices with the increased expectations of ongoing medication regiments, appointments, and unexpected healthcare needs.
With all the time management and effort it takes to navigate these important pieces of your child’s care, it can be extremely helpful to encourage your child to begin engaging in these tasks along with you from an early age. With guidance provided at an early age, children can feel empowerment and a sense of pride. When a child is provided with knowledge, age-appropriate choices, and opportunities to actively participate in their care/treatment, it increases their coping, self-worth, and compliance long term.
As a caregiver, finding ways to encourage autonomy might be difficult, especially since it’s quicker to manage care. Maybe it is because you have multiple children all requiring differing styles of parenting or care, or because of different caregiver expectations. We have met lots of parents who feel it is “safer” or “better” for their child if these important needs are fulfilled by them (parents). However, finding creative ways to teach independence and responsibility can be achieved. Here are some creative ways you can help your child be more independent in their care:
- Encourage your child to create a “coping toolkit” to utilize for procedures (e.g., blood draws, IV placements, MRIs, etc.).
- Teach your child how to schedule their own appointments.
- Have your child come prepared to appointments by educating them about the purpose of the appointment. Additionally, encourage them to have three to five questions prepared for the treatment team so they can be an active participant in the appointment.
- Rehearse your child’s medications, allergies and diagnosis with them so they can teach others if they need to.
- Encourage older children to meet with their treatment team alone.
- Encourage your child to meet regularly with a guidance counselor, therapist or psychologist to process real-life and medical experiences.
Over time, these young individuals will be best able to facilitate their own healthcare responsibilities. Our patients often tell us they were able to have crucial conversations, speak up, and better navigate difficult decisions with the support provided by the most important adults in their life. We would love to continue this conversation with you and to hear your success stories!
How Child Life Helps
Child life specialists are often tasked with supporting patients by identifying ways they can learn to cope with new diagnoses, treatments or admissions. One of the most important interventions we provide is to assist caregivers and providers to guarantee that our patients have a developmentally appropriate understanding of their diagnosis and treatment plan. With this foundational understanding, children are better equipped to ask questions, implement strategies that work well for them, and participate in their healthcare.