Children’s palliative care is a field that demands compassionate and dedicated leaders capable of driving transformative change.
According to research findings by the International Children’s Palliative Care Network (ICPCN), at least 21 million children and young people need palliative care services annually. Out of the 21 million, there are more than 8 million children worldwide experiencing serious health-related suffering due to conditions like cancer, HIV, and other serious illnesses each year. This suffering can be relieved by children’s palliative care, which addresses physical as well as psychosocial and spiritual distress for children and their families. The urgent need for effective and sustainable care models is more pressing than ever.
In this article, I am excited to highlight three remarkable case studies from India, Kenya, and the United States. Each showcases how leadership in children’s palliative care is profoundly impacting the lives of children and their families.
The CPC Leadership Institute: A ‘Bootcamp’ Transforming Care in India and Beyond
The Children’s Palliative Care (CPC) Leadership Institute is a novel innovation, transforming children’s palliative care in South Asia. The programme engages a diverse cohort of emerging healthcare leaders from nursing, medicine, and allied health fields, equipping them with the skills and knowledge needed to champion innovations in children’s palliative care. The programme is an initiative led by Two Worlds Cancer Collaboration and the Hyderabad Centre for Palliative Care.
Participants receive training and mentorship from a team of experts, through in-person workshops, online learning, mentorship, and real-world project implementation. Participants gain practical insights into applying their learning to improve patient outcomes that rely on complex, interrelated systems and adaptive thinking. This dynamic model exemplifies effective, sustainable, and impactful approaches to increasing health system capacity to deliver palliative care in resource-constrained settings.
The programme is now launching a call for applications for its second year. Aspiring leaders can find the eligibility criteria and application here.
Leadership in Palliative Care in Kenya highlighted in the New Humanitarian
The New Humanitarian recently featured an in-depth profile on Kenya’s advancements, emphasising the importance of investing in palliative care at both individual and societal levels. Leaders like Dr. Esther Muinga from the Kenya Hospices and Palliative Care Association (KEHPCA) are crucial in this movement. “Although palliative care is a relatively new medical field, a handful of countries in Africa are recognised to have made strides. Among them are Kenya, Malawi, Rwanda, Uganda, and South Africa, scaling up from what typically began as missionary-run hospices to integrated nationwide public services.”
Read past the headline to this nuanced article, highlighting tremendous work in Kenya, where leaders bring communities, clinicians, and government policies together to expand responsive palliative care systems.
The Coalition of ‘Like Houses’ in the USA: Community-Based Care Models
In the USA, a grassroots movement led by Jonathan Cottor is revolutionising community-based paediatric palliative care. Jonathan’s expertise and dedication have brought together a coalition of “Like House” models — community-based paediatric palliative care homes that provide respite, palliative, and hospice care. Together, these leaders support each other to maximise their impact individually and collectively for the families they serve, focusing on topics such as licensing, business models, and reimbursement methods.
The coalition recently contributed to the May 2024 edition of the National Hospice and Palliative Care Organization’s Paediatric e-Journal. This piece highlights the practical needs and solutions for scaling, strengthening, and sustaining community-based paediatric palliative care programmes in the USA. By reading the e-Journal, you will gain valuable insights into these models and explore how they might be implemented in their own communities.
Conclusion
As the CEO of Global Treehouse Foundation, I am inspired by the leadership showcased in these case studies, which exemplifies the transformative potential of dedicated individuals. These case studies bring to life one of the nine features identified in our recent report on the future of children’s palliative care. In a field that is still maturing and striving for widespread acceptance as an essential service, it is great to see that leadership in action.
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