Appendix E Finding Support

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Appendix E: Pediatric Palliative Care Tips: Finding Support
Children with serious illnesses often experience physical and emotional distress related to their
condition. Emotional distress is also common among their family members. Additional support
can help you improve your family’s quality of life. Although the palliative care team is your best
resource, this sheet can help you think about other supports that might benefit your family.
Support Groups
Support groups can be a source of comfort and connection during difficult experiences. They
are not the same as formal mental health treatments like group therapy. Support groups come
in many forms and there is no rule for picking the right one. Start by using these lists to narrow
down what might be best for you.

Leader

Participants

Format

Focus

•Peer (patient,
survivor, or family
member)
•Professional
(mental health or
other specialist)

•Patients only
•Siblings only
•Parents and other
adult relatives
•Open to entire
families

•In-person
meetings
•Online meetings
•Discussion
boards and blogs

•Targeted (e.g.,
coping with pain)
•Condition-specific
•Caregivers
•General family
support

Respite Care
Respite care provides short-term rest from the daily challenges of caring for someone with
special health needs. It provides time for you to take a break – a key part of being a good
caregiver. Provided in or out of your home, care can range from a few hours to overnight. Use
these questions to start thinking about the best option for you.






What do I need most out of my respite time? (Work or errand time, relaxation, etc.)
Do I want to spend this time inside or outside of my home?
Will my child benefit from time with other kids and new surroundings in an out-of-home
program?
Will transportation to an out-of-home program be challenging?
How often do I need respite care?

Sibling Support
A child’s serious illness affects the whole
family, including siblings who may
experience a range of reactions. It is
common for siblings to feel displaced or
resentful, and potentially guilty about those
feelings. Young siblings may be afraid or
misunderstand what is happening. It is
important that support extend to brothers
and sisters who need to express their
emotions or just take a break. Start by
talking to your children about their concerns
and how they want to be supported.

Art and
Music
Sibling
Camp

Counseling

Sibling
Support

Peer Play

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Support
Group

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School Resources
By law, all students must receive accommodation to continue education in school, in a clinical
setting, or at home. Work with your child’s school to develop a plan:

 Meet with the school counselor and school nurse. They can help with concerns you
have, including what happens in case of emergency.
 Talk to your child’s teachers, who can usually customize work based on your needs. Ask
what materials you can take home to help your child keep up.
 Ask about activities that may help classmates understand your child’s illness.
Local Resources
Even if you have lived in your community for years, it can be hard to know what resources are
available. Here are a few ideas to help you find support in your area.






Ask your child’s health care provider and palliative care team for suggestions.
Check your hospital or clinic bulletin board or website for relevant posts.
Search online for a city, state, or county resource guide.
Contact an organization focused on your child’s illness.

Online Resources
Look for websites that help you connect with friends, relatives, and other families. There are
even sites that allow you to create private online communities.
Social media is another way to find resources. Use key words, such as
your child’s illness, to search for people and groups on sites like
Facebook. Twitter chats, which often have expert guests, may also be
helpful.

Hashtags to Watch
#palliativecare
#palliative
#pedpc

For more information, including a list of specific resources, visit the Palliative Care:
Conversations Matter® campaign at http://ninr.nih.gov/conversationsmatter.

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