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Health Information For Parents
Palliative (pronounced pal-lee-AY-tiv or pal-YAH-tiv) care provides physical, emotional, and spiritual support to sick children and their families. A medical care team — including doctors, pain management specialists, nurses, social workers, and therapists — helps prevent and relieve pain and suffering while also easing stress, anxiety, and the fear associated with serious illness.
Palliative care is not to be confused with end-of-life care or hospice care, which provides care for patients who are not expected to recover. The goal of palliative care is to enhance the quality of life for a child and family during a serious illness and to help families make important decisions about their child’s care.
Any child who has a serious, complex, or life-threatening condition — whether he or she is expected to make a full recovery, live with a lifelong chronic illness, or die from the condition — may be a candidate for palliative care.
Palliative care is helpful for children coping with diseases like cancer; neurological conditions; and heart, lung, kidney, or liver disease.
Many people confuse palliative care with end-of-life care, or hospice care. Hospice care and palliative care programs share a similar goal of providing symptom relief and pain management. But they’re not the same:
Palliative care is designed to meet the unique needs of each child and family. Families can tailor their child’s care, and get as much or as little help as they want.
The palliative care teams might include:
Generally, each hospital has its own type of palliative care team. Some teams even include community volunteers who want to help in any way they can.
Most health insurance plans cover all or part of palliative care, and many palliative care services are supported by charitable donations. If the cost of palliative care is a concern, a social worker might be able to help provide guidance on covering the cost.
Deciding whether or not your child needs palliative care is a personal decision that can only be made after you’ve spoken to your health care provider, considered your child’s and your family’s individual needs, and determined what services are available in your area.
To find services, talk to your health care provider or a representative from your local hospital. You also can research local palliative care services through the National Hospice and Palliative Care Organization online or by calling 1-800-658-8898.
If your child would benefit from a palliative care program, remember that those services can help you too. Family members caring for seriously ill children face many challenges, and palliative care programs can help with some of these.
Parents and other caregivers also play an important role in a child’s health. You know your child better than anyone else, so you’re a partner with the palliative care team. You all have the same goal — providing the best care for your child.
When kids need intensive health care after they’re discharged from the hospital, it’s important that family and caregivers learn about the devices, equipment, and support they’ll need.
It’s common to put your own needs last when caring for a child you love. But to be the best you can be, you need to take care of yourself, too. Here are some tips to help you recharge.
Although the emotional price of raising a seriously ill child can be devastating, it’s only part of the picture. Even during this difficult time, you have to consider the financial implications.
Taking care of a chronically ill child is one of the most draining and difficult tasks a parent can face. But support groups, social workers, and family friends often can help.
Note: All information is for educational purposes only. For specific medical advice, diagnoses, and treatment, consult your doctor.
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