Children’s Hospice Palliative Care Resource Repository

In honour of National Children’s Hospice Palliative Care Day 2022, and thanks to the support of GSK Inc. and Purdue Pharma (Canada), CHPCA and the CNPCC compiled a repository of resources on pediatric hospice palliative care for families and for health care workers. The resources touch on topics like what pediatric palliative care entails, anticipatory grief, and supporting siblings of children with a life-threatening illness, among many others.

For Everyone

• National Children’s Hospice Palliative Care Day 2022
  • • Webinar Recording: Family Perspectives on Making Every Day Count with Children’s Palliative Care
      
      This 1 hour webinar, hosted on October 13th, 2022, shines a light on the lived experiences of three families whose children received hospice palliative care. The panel of families shares the impacts that palliative care had on their child’s life and on their family, the care and supportive resources they accessed thanks to palliative care, and how the care they received empowered their children and families to Make Every Day Count.
• About Kids Health
  • What is Palliative Care? – Palliative care includes reducing the physical, psychological, social and spiritual suffering that is associated with serious illness. Learn about the role palliative care providers can have in your child’s care.
• International Children’s Palliative Care Network
  • What is Children’s Palliative Care? – The working definition of children’s palliative care as defined by the International Children’s Palliative Care Network.
  • Little Stars project – Little Stars, a series of videos, tells the surprisingly life-affirming stories of young people around the world living with life-limiting illnesses. Against the odds, these children and young adults are making the most of every moment thanks to the support of their loved ones, working in harmony with passionate ‘pain and palliative care’ teams.
• CHPCA‘s Grief and Bereavement Resource Repository

For Families

• Canadian Virtual Hospice
  • CaringTogether.life – A free platform, developed by families and pediatric healthcare providers, designed to educate, support, and empower parents caring for a seriously ill child and those who are experiencing pregnancy or infant loss.
  • Me and My Illness – An activity book developed for kids aged 6-12 years living with a life-limiting illness, to help them think about and respond to their thoughts, feelings and questions.
  • KidsGrief.ca – A resource that can help parents support their children when someone in their life is dying or has died. It equips parents with the words and confidence needed to help children grieve losses in healthy ways.
  • My Life, Their Illness – An activity book to help kids think about how someone’s illness is affecting their life.
• Roger Neilson House
  • Sibling Bereavement Video Series – A resource for children/youth to watch and listen to when they were feeling alone in their grief after a death. From this content we were able to create six short documentary videos for two age groups of children/youth to be used as a tool at Roger Neilson House and in our greater community.
• About Kids Health
  • Talking to Kids About Serious Illness – Learn about how to talk to your child about serious illness and how to answer some of the common questions and concerns they may have.
  • What is Palliative Care? – Palliative care includes reducing the physical, psychological, social and spiritual suffering that is associated with serious illness. Learn about the role palliative care providers can have in your child’s care.

• Hospice Palliative Care Ontario
  • Caregiver Support Education – Online modules on a variety of topics to assist caregivers in finding the support they need, exactly when they need it. Includes modules in English and French, as well as modules tailored for First Nations caregivers.

• Courageous Parents Network [US Based]
  • Core Concepts Definitions – As you navigate the medical “system” and your family’s wishes, goals and values, you will likely come across some or all of these concepts: Anticipatory Grief, Baseline, Palliative Care, Shared Decision Making, and Advance Care Planning. Understanding them will help you be the best possible advocate for your child.
  • How Palliative Care Helps
  • Guides – Resources on a variety of topics, professionally reviewed by medical providers, are here as a learning source for you—and to share with others helping you care for your child.
    • Introduction to Pediatric Palliative Care [also available in Spanish]
    • What is Anticipatory Grief [also available in Spanish]
    • Parenting the Surviving Children
    • For Grandparents and Extended Family of Children with Serious Illness [also available in Spanish]
    • And many more!
• Together for Short Lives [UK Based]
  • Family Resources – Family resources created to support anyone who is caring for, or has cared for, a child with a life-limiting or life-threatening condition.
    • Caring for your Child at End of Life – Family Guide
    • Spiritual, Religious and Cultural Wishes
    • Looking After Yourself
    • And many more!

For Health Care Workers

• Canadian Virtual Hospice
  • Resource Repository for Professionals on Pediatric Palliative Care – Compiled in 2018, this comprehensive resource repository was developed in partnership with pediatric palliative care professionals.
• Canadian Paediatric Society
  • Supporting and communicating with families experiencing a perinatal loss – Principal authors: Leonora Hendson, Dawn Davies; Canadian Paediatric Society, Fetus and Newborn Committee
• Le Phare, Enfants et Familles – Centre d’éducation pour professionels [Education Centre for professionals] – Multiple learning modules offered either in French or English for health care professionals.

Pediatric Hospices in Canada

• Canuck Place Children’s Hospice – Vancouver, BC and David Lede House – Abbotsford, BC
• Rotary Flames House – Calgary, AB
• Emily’s House – Toronto, ON
• Darling Home for Kids – Milton, ON
• Roger Neilson House – Ottawa, ON
• Le Phare – Montreal, QC
• Maison Lémerveil Suzanne Vachon – Québec, QC

Pediatric Palliative Care Programs in Canada

• BC Children’s Hospital – Vancouver, BC
• Alberta Children’s Hospital – Calgary, AB
• Stollery Children’s Hospital – Edmonton, AB
• Royal University Hospital – Saskatoon, SK
• Winnipeg Health Sciences Centre – Winnipeg, MB
• SickKids – Toronto, ON
• Trillium Health Partners – Mississauga, ON
  Gurjit Sangha RN BSc MN CHPCN(C)
  Paediatric Palliative Care Facilitator – Women’s & Children’s Program
  P: (905) 813-1100 ext. 6573
• McMaster Children’s Hospital – Hamilton, ON
• Children’s Hospital, London Health Sciences Centre – London, ON
• Children’s Hospital of Eastern Ontario – Ottawa, ON
• Montreal Children’s Hospital – Montreal, QC
• Sainte Justine Hospital – Montreal, QC
• IWK Health Centre – Halifax, NS