Links
Perinatal Hospice and Palliative Care
Perinatal hospice/palliative care programs and support
As prenatal testing becomes increasingly routine, more parents are learning devastating news before their babies are born. In too many places, the ability to diagnose has raced ahead of the ability to care for these families and their babies. But in a beautiful and practical response, more than 100 pioneering hospitals and hospices in the U.S. and other countries have started providing perinatal hospice/palliative care for families who wish to continue their pregnancies with babies who likely will die before or shortly after birth.A perinatal hospice approach walks with these families on their journey through pregnancy, birth and death, honoring the baby as well as the baby’s family. Perinatal hospice is not a place; it is more a frame of mind. Even in areas without a formal program, parents can create a loving experience for themselves and their baby, and health professionals and family and friends can offer support in the spirit of hospice (see A Gift of Time and the resources for parents and caregivers on this site).
Because the concept of perinatal hospice is relatively new, programs and groups listed below may vary in their scope of support and services. Many of the programs listed below are hospital- or clinic-based, some are hospice-based, and a few are faith-based or independent.The Shooting Star Children’s Hospice/Chase Hospice Care For Children
Camp Erin, created and funded by The Moyer Foundation, is the largest nationwide network of free bereavement camps for children and teens ages 6-17 who have experienced the death of someone close to them
It is a weekend-long experience filled with traditional, fun, camp activities combined with grief education and emotional support—facilitated by grief professionals and trained volunteers.At Camp Erin, children are comforted knowing that there are other children who have experienced similar situations and understand exactly what they are feeling. At Camp Erin, children have an opportunity to address their feelings and memorialize their loved ones. They are provided with the tools and resources needed during and after camp, including memories and friendships that last long after camp is complete.
Palliative Care Network provides a platform for palliative care professionals to teach, interact, and exchange ideas with fellow colleagues in places around the world where the knowledge gap is wider than the technology gap.
The Young Careres Program of Hospice Toronto is an age appropriate, child and youth support program for those who have assumed a significant caregiving role for a sibling or other family member with a chronic or life threatening illness or a physical or developmental disabillity.
IPad Apps for People with Special Needs
This website provides a list of applications for the Iphone which are helpfult to families of children with special needs.
A network of love and support for infant loss.
Wellspring is a network of cancer support centres.
Is a support centre where cancer patients and their families can come and share their experiences, find resources and discover new ways to care for themselves and each other.
Gilda’s Club Greater Toronto is a community of free support where men, women, teens and children with cancer – along with their families and friends – can join with others to build social and emotional support as a supplement to medical care. Gilda’s Club also welcomes long-term cancer survivors and those who have lost someone to cancer.
b.r.a.i.n.child is a group of parents, family, and friends who have the common experience of caring for a child with a brain tumour or who are survivors. We are a volunteer organization providing support, education, and research funding.
Ontario Parent’s Advocating for Children with Cancer (OPACC)
Educates, Advocates, Supports and Enables families of children with cancer. Members of OPACC consist of parents, guardians, survivors or close relatives of a child/teen diagnosed with childhood cancer. OPACC has programs and supports in place to meet the needs of families of children with cancer.
A place where parents and families facing the serious illness or death of a child can retreat to reflect on the past, renew strength for the present, and build hope for the future.
Palliative Care Network provides a platform for palliative care professionals to teach, interact, and exchange ideas with fellow colleagues in places around the world where the knowledge gap is wider than the technology gap.
Palliative Care Network’s directory gives palliative care professionals worldwide access to colleagues to provide educational support.
The Mesothelioma Center is an up-to-date resource for all mesothelioma issues ranging from mesothelioma disease to diagnosis options.
http://www.asbestos.com/For female caregivers of SickKids patients (Body Blitz)
SickKids has partnered with Body Blitz Spa ( a women’s only spa). The program offers complimentary passes to mothers or other female caregivers ie. grandmothers of inpatients an opportunity to take a break from the hospital and/or to help relieve some stress by using the spa’s therapeutic water facilities.
Please visit their website http://www.bodyblitzspa.com for further information. Body Blitz is located at 471 Adelaide St West (Between Spadina and Bathurst).
To inquire about receiving a pass, contact Eva Tassis at (416)813-5758.
Perinatal hospice/palliative care programs and support
Some pioneering hospitals and hospices are starting perinatal hospice or perinatal palliative care programs for families who wish to continue their pregnancies with babies who likely will die before or shortly after birth. A perinatal hospice approach walks with these families on their journey through pregnancy, birth and death, honoring the baby as well as the baby’s family.
Pediatric Resource Commons (CHPCA)
The Pediatric Resource Commons has been created as a repository for resources related to pediatric hospice palliative and end-of-life care. Here you will find resources on a number of topics of interest to those caring for children at the end of life.