How Caregivers Can Support Children with Medical Conditions

As a pediatric psychologist working with kids with medical conditions, I have had the privilege of walking through various children’s and caregivers’ journeys through medical care. I have watched children conquer needle stick fears, learn about changes in prognosis with families, teach children how to use nonpharmacological techniques (i.e., non-medication strategies) to help manage pain, families figure out how to make taking medication easier, manage anxiety with wound changes, and so much more. I learn from every family.

The opportunity to join families on their journeys highlighted for me that caregivers aren’t trained to deal with all the emotional reactions that kids have to medical conditions and treatment. While every family may not need the support of a mental health professional, all families who have a child diagnosed with a medical condition or injury can benefit from strategies for how to navigate medical care.

The Tough Stuff Children With Medical Conditions and Their Families Face

Every family, and family member, is different. The parts of medical care that are tough for kids might differ from what is challenging for their caregivers. For example, a caregiver might be focused on how or whether their child will recover, while a child might be worried about taking a horrible tasting medication.

The best way to know what is hard for your child about their medical condition or treatment is to ask them. Letting your child have the space to talk about their thoughts and feelings can help you figure out how to support them as a caregiver. Some examples of questions to consider asking include “Do you have any questions about [insert medical condition or medical appointment],” “How have the doctor’s appointments been going for you?” or “Are you worried about anything?”

Take a minute for siblings. A child’s medical condition can affect all family members. Caregivers often have to jump in to care for a sick child, and siblings’ needs are often understandably put on hold. Siblings may differ in how they react to a new medical condition for their brother or sister. Some siblings might become the perfect child. They may keep everything to themselves, never misbehave, and excel at school. They may be afraid to share their worries with caregivers because caregivers are already worried about their brother or sister.

Other siblings might show their feelings about the tough stuff by acting out and trying to get attention. Some siblings may be able to use existing social supports and coping skills and manage their feelings well. Make time to check in with siblings.

Possible questions to ask are, “Do you have any questions about your brother’s / sister’s medical condition?” “How do you feel about what’s been going on in our family?” or “I know we have been spending a lot of time with your brother/sister. How are things going for you?”

If more than one adult is involved in a child’s medical care, take time to learn what is difficult for each adult. This could be co-parents, spouses, grandparents, uncles, aunts, etc. Anyone who is involved in your child’s care can struggle with it. Have a discussion among adults about what is challenging for each person; this can help you decide how to manage care over time.

Some common challenges to keep an eye and ear out for include difficulties in communication with the medical team, difficulty talking within a family about the child’s medical condition, deciding how much information to sharing with children/siblings, problems taking medications, nervousness about medical appointments, challenges with needle sticks, worries about medical procedures, challenges with peers, and challenges in school.

Why talk about the tough stuff?

Caregivers can make a difference in how their childhood experiences and deals with their medical condition and care. You got this!

How can caregivers help children conquer these challenges?

1. Listen. Sometimes caregivers try to solve the wrong problem. For example, a child might be worried about missing their soccer game and acting out while a caregiver thinks their child is concerned about what the doctor will say that day.
2. Validate. Sometimes it is tempting to try to re-assure children by saying, “That’s no big deal,” or “That won’t hurt.” Instead, try validating your child’s feelings. For example, you could say, “Wow, you are worried about [insert concern],” or “I hear you. That does sound tough.”
3. Come up with solutions together. When your child feels like they are helping solve the problem, they may be more willing to give it a try. Brainstorm ideas together and work together to try a possible strategy.
4. If it didn’t work this time, talk about why it didn’t work and try picking a new strategy next time.

Psychopharmacology Essential Reads

Long-Term Use of Benzodiazepines and Dementia Risk

Does Antipsychotic Medication Work?

The ideas in this blog and resources are not a replacement for mental health care. If you are worried about your child’s behaviors or emotions, reach out to your pediatrician for help.