Care for Children with Serious Illnesses


Pediatric palliative care
is a unique type of care that addresses the symptoms and
stresses of serious illness, while focusing on
quality of life for children and their families. It’s available at
any age of childhood, ranging from newborns
to young adults, and at any stage of an illness. A child’s illness affects
the entire family, so palliative care
supports parents, siblings, grandparents, and
other family members as well as the patients. The added layer of
care it provides can reduce stress
during a difficult time and provide comfort
in a variety of ways. Palliative care
providers can ease pain, offer emotional support,
address family concerns, communicate with
other providers, explain terms and care
options, coordinate care and appointments, and
locate important resources for the whole family. Palliative care is
different from hospice care because it’s
available at any time during a serious illness
and regardless of prognosis. In fact, care can begin
as soon as a family learns about the illness. And care can be provided at the
same time as other treatments, working alongside a child’s
primary medical care team. Health care providers
will often refer patients to palliative
services, but families can request them as well. Every palliative care
team is different and may include doctors,
nurses, child life specialists, respite providers, art and
music therapists, chaplains, counselors, nutritionists,
and pharmacists. And care can be provided
wherever the patient needs it– in a hospital, a
clinic, or at home. The palliative
care team can even help facilitate smooth
transitions between settings. Care is customized
to meet the needs of each patient and
family and offer support based on their beliefs,
culture, and preferences. Parents say that palliative
care benefits families because it provides the
comfort and support they need, while focusing
on quality of life. This emphasis on living
life to the fullest is one of many things that makes
palliative care so special. Talk to your loved ones
and health care providers about the benefits
of palliative care. Conversations matter. Start one today. For more information and
free resources for families, providers, and organizations,
visit the National Institute of Nursing Research, part of the
National Institutes of Health, at ninr.nih.gov/con
versationsmatter.


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