Practical Tips for Children’s Palliative Care Advocacy

Advocating for children’s palliative care is crucial to ensuring that children with life-limiting illnesses receive the support and care they need.

The International Children’s Palliative Care Network (ICPCN) is the only global organisation working to improve access to palliative care for the more than 21 million children worldwide who need it annually. Through its network, ICPCN is uniquely placed to advise, educate, and support at a national, regional, and international level on best practices in CPC. As a central repository for information relating to CPC, and with a global perspective of what is happening in the field, ICPCN are in an ideal position to strategically advocate for the development and improvement of services, the creation of palliative care policies, that include children and their families, and the implementation of these policies, thus increasing access to CPC.

ICPCN works towards inclusion of CPC in Universal Health Coverage (UHC) worldwide by carrying out targeted strategic advocacy with world leaders at a global, regional and national level, use of a suite of WHO-approved advocacy resources which are adaptable at country level; and by harnessing the network to use these resources to strategically advocate in their own localities. ICPCN aims to provide a global voice for children’s palliative care and to advocate for the rights of children to receive the palliative care they require.

People across the globe work in different spheres of influence to advocate for children’s palliative care. These efforts take place Internationally, regionally, and locally. Today we share some tips which cut across different spheres and can be applied by people who are engaged at the grassroots movement to advocate for CPC.

Here are some steps you can take to advocate for children’s palliative care:

1. Educate Yourself: Learn about the needs of children with life-limiting illnesses and their families. Understand what palliative care entails and how it differs from other forms of medical care.
2. Raise Awareness: Increase public awareness about the importance of children’s palliative care through social media, community events, and awareness campaigns. Share stories of children who have benefited from palliative care to illustrate its impact.
3. Engage with Legislators: Contact local, regional, and national legislators to advocate for policies that support children’s palliative care. Write letters, make phone calls, and schedule meetings to discuss the importance of funding and resources for children’s palliative care programmes.
4. Collaborate with Organisations: Partner with local hospitals, healthcare providers, nonprofits, and advocacy groups that focus on children’s palliative care. Join forces to advocate for better services, funding, and support for children with life-limiting illnesses and their families.
5. Support Research: Advocate for increased funding for research into children’s palliative care to improve outcomes, develop new treatments, and enhance quality of life for children and families facing life-limiting illnesses.
6. Empower Families: Support families navigating the complexities of caring for a child with a life-limiting illness. Provide resources, guidance, and emotional support to help families make informed decisions and access the care and services they need.
7. Promote Compassionate Care: Advocate for a compassionate and holistic approach to children’s palliative care that addresses the physical, emotional, social, and spiritual needs of children and their families.
8. Share Personal Stories: Share your own experiences or those of others who have been impacted by children’s palliative care. Personal stories can be powerful tools for raising awareness and inspiring action.
9. Address Stigma and Misconceptions: Challenge stigma and misconceptions surrounding children’s palliative care by providing accurate information and dispelling myths. Help others understand that palliative care is about improving quality of life and providing support, not just end-of-life care.
10. Stay Informed and Active: Stay informed about developments in the field of children’s palliative care and remain active in advocating for positive change. By staying engaged, you can continue to make a difference in the lives of children with life-limiting illnesses and their families.