Canada’s Paediatric Palliative Care Alliance is a new coming together of healthcare professionals, organisations, and families with lived experiences, united by a shared commitment to enhancing paediatric palliative care across the country. Supported by Roger Neilson Children’s Hospice and funded by a Health Canada grant of up to $1 million over 24 months, the Alliance aims to ensure that every Canadian family and child facing a life-limiting illness can access high-quality paediatric palliative care in their preferred setting.
Project Director Kira Goodman reflects on the journey so far:
“Since we began our work in January of this year, I’ve had the privilege of listening to families and caregivers of children with life-limiting illnesses across Canada. They’ve shared how quality paediatric palliative care has positively impacted their journeys—and highlighted areas where we still have work to do.”
The Alliance’s approach is deeply informed by the narratives of parents and caregivers across the country. Emphasising genuine collaboration, the initiative brings together healthcare professionals, individuals with lived experiences, and organisations dedicated to this cause.
Why are we creating this Alliance?
In order to shape the future landscape of paediatric palliative care in Canada, we created the Alliance to dig in and fully understand the Canadian landscape for accessing and delivering paediatric palliative care. This has allowed us to glean what the top issues and opportunities are in this field right now. Evidenced through literature and validated through consultations, we’ve identified the following:
- Children and families requiring palliative care in Canada are distributed in fewer numbers across a large geography, while specialty paediatric palliative care services are centralised in a few urban settings.
- The specialty care that does exist across Canada varies in terms of team size and composition, funding, resources, and access to hospice or respite care.
- We are truly dealing with an issue of scale. While it is difficult to estimate the precise need for care due to a lack of data sources, we know that many children needing palliative care are unable to access services.
- Newborns, children and youth facing a life-limiting illness, along with their families, have unique needs that require different skills, resources and approaches than adults.
- Many healthcare providers report feeling unprepared and lacking the skills and knowledge to have difficult conversations with children and families with complex healthcare needs.
- Paediatric palliative care is still poorly understood by patients, families, providers and the general public.
These insights drive the Alliance’s aspiration: to ensure all children and families in Canada have equitable access to high-quality paediatric palliative care throughout their journeys, and in their chosen location.
How will the Alliance turn these challenges into opportunities?
The core strategy of the Alliance is to begin with a three-fold approach to improving access to care:
- Develop a comprehensive, evidence-based online resource hub where care providers can access existing and new resources to facilitate the efficient implementation and delivery of paediatric palliative care services.
- Establish a formal network to support care providers, build capacity, offer ongoing mentorship, and ensure sustainability.
- Align stakeholders on a unified vision of high-quality paediatric palliative care in Canada, with a commitment to addressing the unique needs of equity-deserving groups.
Commitment to Inclusivity:
The Alliance is dedicated to fostering an inclusive and equitable approach to paediatric palliative care, respecting the diverse traditions, values, and beliefs of the families served. Children with life-limiting illnesses have often been considered a ‘special population,’ limiting exploration into the experiences of Indigenous, Francophone, LGBTQ2+, and other equity-deserving communities. The Alliance is committed to engaging with these groups and amplifying their voices.
Looking Ahead:
Paediatric palliative care requires a unified voice, supported by a dedicated team focused on advancing this work. Historically, under-resourced teams have been tasked with both delivering care and promoting this agenda. The Alliance has initiated discussions with Health Canada about the continuation of this work. With future support, efforts can enhance efficiency and quality by concentrating on strategic visioning, innovation, research, education, data collection, and advocacy.
Together, the Alliance is working towards a shared goal of improving access and quality of care for children with life-limiting illnesses and their families.
Healthcare providers and individuals with lived experiences interested in learning more are encouraged to visit the Alliance’s website to sign up for project updates and to share their voice: www.pediatricpalliativecare.ca or www.soinspalliatifspediatriques.ca
For further information, please contact:
Kira Goodman
Project Director, Canada’s Paediatric Palliative Care Alliance
kira@pediatricpalliativecare.ca
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