Pediatric palliative care is a specialized, growing area of medicine that focuses on providing comfort and improving the quality of life of children with serious or life-threatening illnesses. It addresses the emotional and physical symptoms of patients with severe conditions – from the time of diagnosis of the illness and throughout the course of treatment. Pediatric palliative care specialists also provide resources to families to help them cope with the stresses of their child’s condition and treatment.
From Nemours' KidsHealth
- Relaxation Techniques for Children With Serious Illness
- End-of-Life Care for Children With Terminal Illness
- Palliative Care
- How Can Spirituality Affect Your Family's Health?
- Caring for a Seriously Ill Child
- Complementary and Alternative Medicine
- Helping Your Child Deal With Death
- Managing Home Health Care
- Taking Care of You: Support for Caregivers
Caring for a Seriously Ill Child
Taking care of a chronically ill child is one of the most draining and difficult tasks a parent can face. Beyond handling physical challenges and medical needs, you'll have to deal with the emotional needs your child may have and the emotional impact that the prolonged illness can have on the entire family.
Luckily, this tough balancing act doesn't have to be done alone: support groups, social workers, and family friends often can lend a helping hand.
Explaining Long-Term Illness to a Child
Honest communication is crucial to helping a child adjust to a serious medical condition. It's important for a child to know that he or she is sick and will be getting lots of care. The hospital and the medicine may feel frightening, but they're part of helping your child feel better.
As you explain the illness and its treatment, give clear and honest answers to all questions in a way your child can understand. It's also important to accurately explain and prepare your child for any treatments — and possible discomfort that might go with along with those treatments.
Avoid saying "This won't hurt" if the procedure is likely to be painful. Instead, be honest if a procedure may cause some discomfort, pain, pressure, or stinging, but then reassure your child that it will be temporary and that you'll be there to offer support while or after it's done.
Many hospitals give parents the option to speak to their child about a long-term diagnosis alone, or with the doctor or the entire medical team (doctors, social workers, nurses, etc.) present. Your doctor or other medical professional probably can offer advice on how to talk to your child about the illness.
Tackling Tough Emotions
Your child will have many feelings about the changes affecting his or her body, and should be encouraged and given opportunities to express any feelings, concerns, and fears. Ask what your child is experiencing and listen to the answers before bringing up your own feelings or explanations.
This kind of communication doesn't always have to be verbal. Music, drawing, or writing can often help kids living with a life-threatening disease express their emotions and escape through a fantasy world of their own design.
Kids may also need reminders that they're not responsible for the illness. It's common for them to fear that they brought their sickness on by something they thought, said, or did. Reassure your child that this is not the case, and explain in simple terms what caused the illness. (You may also want to reassure your other kids that nothing they said or did caused their sibling's illness.)
For many questions, there won't be easy answers. And you can't always promise that everything is going to be fine. But you can help your child feel better by listening, saying it's OK and completely understandable to have those feelings, and explaining that you and your family will make him or her as comfortable as possible.
If a child asks "why me?" it's OK to offer an honest "I don't know." Explain that even though no one knows why the illness occurred, the doctors do have treatments for it (if that's the case). If your child says "it's not fair that I'm sick," acknowledge that your child is right. It's important for kids to know it's OK to feel angry about the illness.
Your child may ask "am I going to die?" How you answer will depend on your child's age and maturity level. It's important to know, if possible, what specific fears or concerns your child has and to address them specifically.
If it is reassuring to your child, you may refer to your religious, spiritual, and cultural beliefs about death. You might want to stay away from euphemisms for death such as "going to sleep." Saying that may cause children to fear going to bed at night.
Regardless of their age, it's important for kids to know that there are people who love them and will be there for them, and that they'll be kept comfortable.
Just like any adult, a child will need time to adjust to the diagnosis and the physical changes and is likely to feel sad, depressed, angry, afraid, or even to deny that they are sick. Think about getting professional counseling if you see signs that these feelings are interfering with daily function, or your child seems withdrawn, depressed, and shows radical changes in eating and sleeping habits unrelated to the physical illness.
Kids with chronic illnesses certainly require extra "tender loving care", but also need the routines of childhood. The foremost — and perhaps trickiest — task for worried parents is to treat a sick child as normally as possible.
Despite the circumstances, this means setting limits on unacceptable behavior, sticking to normal routines, and avoiding overindulgence. This may seem impossible, particularly if you have feelings of guilt or an intense need to protect your sick child. But spoiling or coddling can only make it harder for a child to return to daily activities. When your child leaves the hospital for home, normalcy is the goal.
Dealing With Siblings
Family dynamics can be severely tested when a child is sick. Clinic visits, surgical procedures, and frequent checkups can throw big kinks into everyone's schedules and take an emotional toll on the entire family.
To ease the pressure, seek help to keep the family routines as close to normal as possible. Friends and family members may be able to help handle errands, carpools, and meals. Siblings should continue to attend school and their usual recreational activities; the family should strive for normalcy and time for everyone to be together.
Flexibility is key. The "old normal" may have been the entire family around the table for a home-cooked meal at 6:00, while the "new normal" may be takeout pizza on clinic nights.
Also, consider talking with your other children's teachers or school counselors and let them know that a sibling in the family is ill. They can keep an eye out for behavioral changes or signs of stress among your kids.
It's common for siblings of a chronically ill child to become angry, sullen, resentful, fearful, or withdrawn. They may pick fights or fall behind in schoolwork. In all cases, parents should pay close attention, so that they don't feel pushed aside by the demands of their sick brother or sister.
It may also help them to be included in the treatment process when possible. Depending on their ages and maturity level, visiting the hospital, meeting the nursing and physician staffs, or accompanying their sick sibling to the clinic for treatments can also help make the situation less frightening and more understandable for the healthy siblings.
What they imagine about the illness and hospital visits are often worse than the reality. When they come to the hospital, they can develop a more realistic picture and see that, while unpleasant things may be part of the treatment, there are people who care about their sibling and do their best to help.
Lightening Your Load
The stress involved in caring for a child with a long-term illness is considerable, but these tips might ease the strain:
- Break problems into manageable parts. If your child's treatment is expected to be given over an extended time, view it in more manageable time blocks. Planning a week or a month at a time may be less overwhelming.
- Attend to your own needs. Get appropriate rest and food. To the extent possible, pay attention to your relationship with your spouse, hobbies, and friendships.
- Depend on friends. Let them carpool siblings to soccer or theater practice. Permit others — relatives, friends — to share responsibilities of caring for your child. Remember that you can't do it all.
- Ask for help in managing the financial aspects of your child's illness.
- Recognize that everyone handles stress differently. If you and your spouse have distinct coping styles, talk about them and try to accommodate them. Don't pretend that they don't exist.
- Develop collaborative working relationships with health care professionals. Realize you are all part of the team. Ask questions and learn all you can about your child's illness.
- Consult other parents in support groups at your care center or hospital. They can offer information and understanding.
- Explore support groups for parents who have children with the same or similar illness.
- Keep a journal.
- Utilize support staff offered at the treating hospital.
Reviewed by: Dale Perkel, LCSW
Date reviewed: January 2012