Every child will experience many health problems during infancy and childhood. Most of these health problems are mild, transient and acute. These illnesses will not interfere with daily life or child development.
For some children and families, chronic health conditions affect every day life and all aspects of childhood. Families are often under an extreme amount of stress while managing to care for a child with a chronic illness.
Coping as a Family with a Chronic Pediatric Illness:
Stay organized to lower the overall family stress. Find a care notebook or file folder to keep important documents together in one place.
Write everything down.
Keep a running tally of questions for doctor's visits.
Learn what you can about your child's illness. Stay informed and on top of the latest research.
Be an advocate for your child. You are their voice. Use it.
Stay involved and tell your child what is going on, according to their age level. If you don't tell them what to expect, children often imagine the worst.
Offer choices so that they feel more involved in their treatment. Some tasks and treatments are unavoidable, but others may have room for choices. Give them options whenever possible so the child feels as though he has some control over his environment.
Plan out procedures because unexpected stress is more difficult to handle than anticipated stress. Some chronically ill children do better with days to prepare while others worry themselves sick. Know your child and maintain flexibility.
Support your child's activities and friendships as much as possible. It's devastating for children to learn that they are, in fact, different, and even more so when the ill child begins to lose friends due to their illness.
Listen and be available to talk with your child about the problems they're facing. Ask them how they feel and listen to their answers. Help them find solutions to their problems.
Recognize the warning signs of depression and suicide in children and yourself. Take those feelings seriously.
Validate your child's feelings, allowing them to express their fears.
It is so important to be hopeful. For you and your child both. Coping with a chronic illness can be discouraging and scary.
Remain flexible and recognize the limitations of yourself and of your child.
Coordinate with your child's school.
Make time to have fun together as a family without focusing upon the illness. You may need to schedule this time in advance, but it will be important to do so to keep the family unit functioning.
Involve the entire family in every way they are able.
Keep private conversations private. Kids hear more than one might think. Make sure anything they overhear isn't something that may devastate them.
Develop - and use - an extended support network of people outside of your immediately family. Perhaps those from your church, school, community or children's hospital. People generally love to help one another, even if it's just bringing over a hot meal. You may have to tell them precisely what you'd like them to do, so be prepared to ask for something specific.
Teach all children in the family new ways to cope with the challenges that go along with a chronic condition.
Find other families and children who are experiencing the same thing. As Band Back Together proves, knowing you're not alone is a huge relief.
Taking Care of Yourself While Caring for a Chronically Ill Child:
Know your limits. You're not super-caregiver and you don't have to be. Take care of the essentials and don't be hard on yourself if you can't take care of everything else.
Be willing to take a time out and take a break for yourself. Caregiver burnout puts an added stress on everyone in the family and will do you no good in the end.
Ask for help when you need it.
Take advantage of others who offer to help.
How You Know You Might be Suffering Caregiver Burnout:
Every day is a bad day.
You no longer have the energy to care about anything.
You're exhausted.
You feel like nothing you do makes a difference or is appreciated.
Dealing with Caregiver Burnout:
- Recognize the signs of burnout
- Reverse by managing stress and seeking support.
- Build Resilience by taking care of yourself.
Additional Resources for Pediatric Caregivers:
The National Easter Seal Society offers services for people with disabilities and special needs and their families. They have local chapters.
PACER (Parent Advocacy Coalition for Educational Rights) works for better opportunities and quality of life for kids and teens with disabilities and their families through parents helping parents.
Brave Kids has message boards and a searchable resources directory that contains camps, respite care, adapted sports, transportation and much more.
The Starlight Foundation is dedicated to the development of projects that empower seriously ill children to combat the medical and emotional challenges they face on a daily basis. They have developed free CD-ROMs for kids with diabetes, asthma, and cystic fibrosis and other conditions, and their families. They also run a social networking site for teens with chronic and life-threatening illnesses and their siblings.
