Having a child, teenager or parent with a rare disease presents the same unique challenges for those that love and care for them, as it can for adult patients with rare diseases. The five principles of Standing Up for Your Health also apply to caregivers who are managing the care of a loved one. We have added some specific suggestions to empower parents and adult children of patients with rare diseases.
Standing Up for Your Child’s Health
There is nothing more devastating to a parent than to see your child suffer from a serious disease. For every parent who has heard these words, "Your child has rare disease", it is a moment frozen in time and a life changing event.
Whether you've just learned your child has a rare disease, or you have been managing your child's disease for many years, the Parents of Pediatric Patients page provides tips, information, and resources that can help. We will continue to include additional information, so check back regularly.
Is your child recently diagnosed? If your child was recently diagnosed, it's likely your days have suddenly become filled with medical tests, doctor visits and, no doubt, worrying. This process can be confusing and overwhelming. You might feel depressed or even angry, and ask "Why did this happen to us?" While those feelings are normal, it's important to know that you're not alone. The first five principles in this guide can all be used to help you be a strong parent advocate to stand up for your child’s health, to ensure that they, and you, get the support you need. Below are a few other thoughts for parents of a child with a rare disease.
Supporting students with rare diseases. Sending your child back to school after treatment for any disease can be scary and overwhelming. Speak with your child’s teacher, doctors and school nurse. Explain any limitations or precautions that might be necessary to have your child safely return to his or her classroom.
Take Care of Yourself. As any parent of a sick child knows, this is a very real dilemma. On the one hand, your focus needs to be on your child and helping him or her get healthy. On the other hand, your child needs you to be healthy, strong and in control. And you can only be this kind of model for your child if you take care of yourself by eating right, exercising and getting plenty of sleep. If you feel you don't have time to do this, eliminate other things from your life and make the time. Your mental, physical and spiritual health is critical to your child's health. Learn more about resources for caregivers.
Find Time to Have Fun. Your child's illness is serious. Sometimes, you may feel like every second of your life revolves around medication schedules and trips to the doctor. That's why it's vital for you to find relief by not taking every moment of the day too seriously. Make time to do things you enjoy – even if you need to sandwich fun times between appointments. This could be as simple as taking a walk, playing cards with a friend, doing a craft project or going to the park. Take a minute now to make a list of 5 things you have fun doing – and commit to doing one this week. You will find you feel more refreshed when you do.
From Adolescent to Young Adult—Helping Teens Stand Up for Their Health
As parents, we do our best to prepare our children for the adult world. We teach them right from wrong, social sills, how to do their laundry and how to drive a car, but do we prepare them to transition from pediatric medical care to adult medical care?
“Transition” in the patient care field is defined as the process of moving from pediatric health care to adult health care. The process can often present challenges for youth with a rare disease and their families. The transition generally begins once your child is a teenager, but don’t wait to get your child involved. The sooner your child learns about their illness, the better prepared they are to begin taking charge and stand up for their health.
How do parents begin the process of preparing their children to assume responsibility for their own medical care and make the best choices? Below are some suggestions on how to begin the process.
- Identify a transition team. These are the key people who will help your child with transitioning from pediatric care to adult care
- Establish a transition plan to identify your child’s specific needs
- Create a transition record, including a notebook summarizing medical information, including the patient’s medical insurance and history of hospitalizations, procedures and tests.
- Complete this skills assessment check list. This will help you and your child identify their strengths and in what areas they need assistance.
- Seek recommendations from your child’s pediatrician for adult care physicians. Schedule an appointment to meet the physicians so you can help your child in the selection process.
Pediatric to adult healthcare transition can be a scary process for parents, especially when your child has a chronic illness. There are resources that can help with making the move from pediatric care to adult care successful.
Changing Roles for Families and Youth check lists. These check lists identify key tasks that young adults should be able to do as they make the transition out of pediatric healthcare and learn to stand up for their health. How comfortable are you as a parent or your child as a patient, with these changes? Checklists are in English and Spanish.
Standing Up for Your Parent’s Health
Standing up for your health is important for every patient with a rare disease. It becomes more important, and more complicated as parents age. They may have other illnesses or disabilities that must also be considered when being a strong advocate for their health. You and/or your parent may need to be more proactive with his or her healthcare providers.
These first five principles to standing up for your health may be new to your parent and might take some coaching or assistance from you. The goal is to empower your parent to be stand up for their health. That includes encouraging them to do all that they are capable of doing. If you want them to be more engaged in their healthcare decisions, it is important that you not assume the role of primary advocate for them unless it is clear that they cannot adequately stand up for themselves. Many adult children step in prematurely to "help" their parent without first assessing the parent's true capabilities.
How you answer the questions below will help determine to what degree, if any, you should partner with your parent as their health advocate. Regardless of whether your parent is a strong self-advocate or does so with your assistance, the five principles of Standing Up for Your Health suggest practical ways to ensure that your parent gets the quality healthcare he or she deserves.
Here are several important questions you can ask yourself to better assess whether your parent needs for you to be his or her health advocate, if they just need a little support to be able to stand up for their own health:
- What is your parents overall health status? Are there vision or hearing impairments that would make communication with healthcare providers difficult or confusing? Does your parent exhibit any cognitive difficulties such as memory loss or confusion?
- Is your parent expressing a desire for help?
- Is she easily overwhelmed by details about her rare condition or other health issues? Does she typically ask pointed questions of healthcare providers to get the necessary information? Is the information she provides about her symptoms, medical history or other details of her rare disease and overall health, accurate and thorough?