As a parent or caregiver of a child, you may have questions or need support. Here are 5 of the best tips for managing your child’s chronic disease or illness.
Navigating our disjointed healthcare system is hard enough. But when you are caring for a child who has a chronic disease or condition, it can get overwhelming really fast. The following tips can help.
You will soon find that you have to become the CEO of your child’s care when you are managing your child's chronic disease or illness. Embrace it. No one will be a bigger advocate for your child’s healthcare than you. But just like the CEO of a company, apply your strengths where they’re needed most, rally those around you to support your mission, and delegate wherever you can.
When you’re seeing multiple doctors or specialists, lack of information is an enemy. Use software to consolidate and mobilize your child’s medical records. No matter where you are, you’ll be able to share a complete picture of your child’s health and help everyone involved in their care get and stay on the same page. Having this information at hand can also help you avoid duplicate tests, medication interactions, and more.
Have a Plan
There are free care planning software solutions that can help you create a care plan for your child, complete with medical history, healthcare goals, and lists of medications, health conditions, and allergies. Using software that makes healthcare records shareable electronically can help you provide your child’s doctors and any other caregivers or family members you choose with access to important healthcare information when and where they need it.
If someone else has to take your child to the doctor in your absence, they can view vital medical information as well as any new health measurements, like blood sugar levels, episodes of fatigue, changes in weight, or changes in appetite, that you’ve documented since the last visit.
Additionally if your child has seen other healthcare professionals since visiting the doctor who is primarily managing their overall health, you can get those new medical records added quickly so everyone providing care is working from the very latest information.
With healthcare information shared online, you have an opportunity to provide doctors with fast access to actionable information. For example, if you track important biological measurements or keep an electronic journal of how your child feels in relation to what they eat or do throughout the day, doctors can use the information to spot trends over time and potentially get vital clues to symptom triggers.
With the right knowledge and tools at your fingertips, you’ll be better prepared to have proactive, meaningful discussions with your child’s doctors. Share information and goals so everyone can work together as part of a larger care team in managing your child's chronic disease for the maximum benefit of your child.
More Tips for Managing Your Child’s Chronic Disease
For additional support and articles that may help you as a caregiver or parent managing your child's chronic disease or illness needs, consider checking out the following:
- Family Voices aims to achieve family-centered care for all children and youth with special healthcare needs and/or disabilities.
- CancerCare.org article: Caring for Yourself When Your Child Has Cancer
- Parenting.com article: 10 Ways to Cope With a Child’s Chronic Illness
- Easterseals article: Finding a Caregiver for a Child With Special Needs
- GoodTherapy.org article: Knowing Your Limits When Parenting Children With Chronic Illness
- A family’s story: 6 Years After Diagnosis: Lessons Learned
- A family’s story: Changing Lives for the Better.