|
Palliative Care Publications for Families/Caregivers
Palliative Care in the News
Pediatric Palliative Care
Radio Story
Help for Parents and Ill Children to Deal with
Death
National Public Radio recently aired an eight-minute segment
featuring The Initiative for Pediatric Palliative
Care’s (IIPC) faculty development workshop
held in Boston, MA. in June 2004. Click
here to listen to the segment! (Real Audio Player
software is needed to listen to the story but this is
FREE software and can be downloaded by clicking the link
above to listen.
When
A Child Is Dying - Smallest
patient offers biggest lesson
By Bruce Himelstein and Joanne Hilden 2001, Partnership
for Caring
Parents
Don't Regret Talking About Death
The American Psychological Association (9/15/04)
Fact
Sheets/Brochures
Approaching Grief
Brochure
"There is neither a right nor wrong way to approaching
grief. Each of us must establish our own way of dealing
with it. There is, however, a pattern to resolving grief
and others have suffered losses and experienced intense
grief and survived. As parents/caregivers you realize
you are not alone. Others care, and are willing and able
to help". - Children's Hospice International
This brochure
includes help with understanding:
Stages of Grief
How Children Approach Grief
Ways to Help Your Children Grieve
Ways Resolve Loss
How to Select a Care Provider
Common questions for patients and loved ones facing life-threatening
illnesses. Determining if a hospice is right for you may
best be learned from interviewing different hospices and
talking to those you trust who are familiar with hospice
programs in your area. This Web
site provides information on what services to expect
from a hospice, how hospice begins, what supports are
available to families/caregivers and choosing a palliative
program.
Click
here for a checklist which can be used to evaluate
the different types of care and services a hospice may
provide. Developed by The National Hospice and Palliative
Care Organization
An understanding of age appropriate grief
reactions and conceptions of death are important when
assessing a child’s response to terminal illness
and a loved one’s death. This Fast Fact reviews
key developmental concepts and describes strategies for
addressing children’s grief.
Children grieve differently than adults. They often grieve
in spurts and can re-grieve at new developmental stages
as their understanding of death and perceptions of the
world change. Childhood grief may be expressed as behavioral
changes and/or emotional expression. The two most important
predictive factors of a child’s successful outcome
after suffering a loss are the availability of one significant
adult and the provision of a safe physical and emotional
environment.
This fast facts sheet is currently available on the End
of Life/Palliative Education Resource Center Web site
at: www.eperc.mcw.edu/fastFact/ff_138.htm
An advance directive is your life on your
terms. Whether you're 18 or 80, documenting your wishes
today means your family won't have to make heart-wrenching
decisions later. To help patients, families and the hospitals
that serve them, the American Hospital Association (AHA),
with the cooperation of other organizations, has compiled
key resources to enhance educational efforts and raise
awareness around this important issue. The Association
encourages everyone to talk with their family, their friends,
their doctor. Know the options. Decide what's right for
themselves. And then put it in writing.
The American Hospital Association's
"Put It In Writing" Web site -contains resources
to help people put their wishes about end-of-life care
into advance directives.
Periodicals/Articles
Davies B, Collins JB, Steele R, Pike I, Cook, K. The
impact on families of a Children's Hospice Program. Journal
of Palliative Care. 2003;19:15-26
Steele RG. Experiences of Families in Which a Child Has
a Prolong Terminal Illness: Modifying Factors. International
Journal of Palliative Nursing. 2002; 8:418-434
Sumner, LH. Lighting the Way: Improving the Way Children
Die in America. Caring.
2003;22:14-18
Whittle M, Cutts S. Time to Go Home: Assisting Families
to Take Their Child Home Following a Planned Hospital
or Hospice Death. Pediatric
Nursing. 2002;14:24-28
Publications
Home Care for Seriously Ill Children: A Manual
for Parents
By Stacy Orloff, LCSW, EdD, and Susan M. Huff, RN, MSN
A manual
that serves as a guide and support to parents who, faced
with their child's life-threatening illness, choose to
or must care for their child at home. Order this manual
from Children's Hospice International.
Views from Our Shoes: Growing
Up With a Brother or Sister With Special Needs.
By Donald J. Meyer
This
book shares a collection of 45 brief essays by children
and young adults who have a sibling with special needs,
ranging from mental retardation through a number of rare
syndromes. The writings are arranged in chronological
order, from that of a 4 year old to an 18 year old.
By
Donald J. Meyer
A life limiting illness or condition of
a child impacts a wide community, siblings often find
their world shaken and broken. How to help these children
through the time of their sibling's illness and after
the death? Children's concepts of life/death and
dying are impacted by developmental levels, which are
also impacted by cultural background. Cultural factors
influence communication styles and parental expectations
for children. Cultural background and family experience
influence the amount of information considered appropriate
to share with children and perception of appropriate responses
to difficult situations. Each child and family
is unique, and the children themselves can guide us. Several
young people provide their own reflections on living through
the time of a sibling's illness and after the death, at:
www.nhpco.org/i4a/pages/Index.cfm?pageID=4665
National
Support Groups
Bereaved Parents
Bereaved
Parents is a Web site that offers a forum, chatroom
and helpful information for bereaved parents. Started
as a support network by the parents of a son that died
at the age of three years from a diaphragmatic hernia.
The Compassionate Friends
A national nonprofit, self-help support
organization that offers friendship, understanding,
and hope to bereaved parents, grandparents and siblings.
There is no religious affiliation and there are no membership
dues or fees.}
The
STARBRIGHT 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. STARBRIGHT projects do more than educate or entertain:
they address the core issues that accompany illness –
the pain, fear, loneliness, and depression that can be
as damaging as the sickness itself.
National Center for Grieving Children and Families
The mission of The
Dougy Center for Grieving Children is to provide loving
support in a safe place where children, teens and their
families grieving a death can share their experiences
as they move through their healing process.
For Siblings
Sibshops
are pedal-to-the-metal celebrations of the many contributions
made by brothers and sisters of kids with special needs.
Sibshops acknowledge that being the brother or sister
of a person with special needs is for some a good thing,
others a not-so-good thing, and for many, somewhere in-between.
They reflect a belief that brothers and sisters have much
to offer one another — if they are given a chance.
Sibshops are a spirited mix of new games (designed to
be unique, off-beat, and appealing to a wide ability range),
new friends, and discussion activities. The Sibshop curriculum
is used throughout the United States, Canada, Croatia,
England, Ireland, Iceland, Japan, New Zealand, Guatemala,
Mexico, and Argentina.
The
SibKids Listserv
SibKids is a great place to meet other young brothers
and sisters from around the world. On SibKids, members
talk about their siblings with special needs, favorite
music, friends, local sports teams, school—just
about anything!
Last Updated July 8, 2004
|
