Blog Home > Blog > Caregiving Relationships: How to Care for a Child with a Long-Term Illness or Disability

A long-term illness or injury in a child is life-altering for the entire family. Long-term care needs may arise from all kinds of situations, such as developmental disabilities, genetic diseases, mental illness, chronic ailments, cancer, a physical injury, or something else entirely. Regardless of the cause, caring for a child can put a strain on your relationships. It’s important for all involved in care to find ways to cope with the stress and responsibility that comes with caring for a child. In this article, we’re going to discuss how to prepare for medical appointments, how to help your child cope, and how to manage your own stress.

How to Prepare for a Child’s Medical Appointments

Caring for a child with a long-term diagnosis can be a fulfilling, yet gut-wrenching experience. It can be hard to come to terms with the fact that there’s nothing you can do to make it go away. But something you can do to help your child through this period is to remain calm and organized. To prepare for medical appointments here are some actionable tips:

  • Write down your questions.
    You might be caught up in the moment once you get to the medical appointment, so having your questions written down in advance can be immensely helpful.

    Create a note on your phone or have a pen and paper somewhere accessible between appointments where you can start gathering your questions as they arise.
  • Think in stages.
    See if your doctor/child’s care team can help you compartmentalize and organize the things you’ll need to understand about the different phases or stages of your child’s diagnosis.

    Ask questions that help you set expectations, both now and into the future.

    Questions like: What are their treatment options? What skills will you need moving forward (like administering injections or physical therapy exercises)? Are there any risks or side effects with their prescriptions? Is there a local support group that would be helpful to you?
  • Ask for help.
    Don’t be afraid to ask for help if there’s something your family is struggling with. Even if the doctor doesn’t have the answers, they may be able to point you in the right direction for support.

How to Help Your Child Cope

Even if your child doesn’t understand the details of their diagnosis or treatments, there is still a lot you can do to help put them at ease. Here are some tips for helping your child cope:

  • Make sure to keep discussions about the hospital cheerful. For example, talk about it as a place where doctors and nurses help to make people feel and get better.
  • Read stories and books about hospitals to your child to familiarize them with the concepts and make positive associations with them.
  • Play games where you and your child role-play or pretend to be doctors and nurses. You can create imaginative games based on the experiences they may have. For example, you can create a pretend IV that they can administer to a doll. Let them comfort the doll by saying “this will only hurt for a second and then you’ll feel better!”
  • Reassure your child that you will be there for them as much as possible.
  • Make sure they know how proud you are of them.
  • Visit the hospital beforehand. Showing your child that the hospital is nothing to be afraid of can help them avoid a fear buildup, and may even help them feel excited to visit.
  • Keep explanations simple about the treatments or procedures they need, but tell the truth. Trust is paramount. It’s important that they know what to expect and feel prepared for the experience.


How to Sustain Long-Term Care for Your Child

As a parent, there’s already a lot of weight on your shoulders, and that’s without a chronic and/or debilitating condition you need to help care for. To sustain care for the long term, it’s important that you take care of yourself too. When you’re at the hospital, give yourself space to breathe – it’s perfectly healthy to take a walk outside, step out of the hospital room, get a coffee, take a deep breath, etc. When you’re at home, it’s ok to ask a family member to help so that you can take an afternoon to yourself, or take an exercise class, or a nap.

You can’t sustain the high quality of care your child deserves if you’re burnt out and exhausted. Self-care isn’t selfish, it’s essential.

Closing Thoughts

While most American families will need to care for a loved one at some point, caring for a sick or injured child can be a particularly difficult experience. It’s tough to watch them go through treatments and procedures they don’t fully understand. Through these trying experiences, it’s important to find support. If you are caring for someone over the age of 18, the California Caregiver Resource Centers are here to help you.  

The 11 nonprofit California Caregiver Resource Centers (CRCs), serve family caregivers of those affected by chronic and debilitating health conditions, degenerative diseases, or traumatic brain injury. Click here to find your local center.

If you are a caregiver for your loved one, we recommend you check out our article about getting paid to be a caregiver. Becoming a caregiver is difficult and expensive–out-of-pocket annual costs average in the thousands for a family caregiver. The state of California offers several paths to receiving at least partial compensation or subsidized assistance, so click here to learn more about how to get paid to be a caregiver.

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