Authors: Anu Savio Thelly, Nurse Consultant, Mahatma Gandhi Medical College and Research Institute, Pondicherry, Volunteer at Two Worlds Cancer Collaboration

Dr Tara Devi Laabar, Registered Nurse, Bethanie Aged Care Group & Rosewood Aged Care Group – Perth, WA, Volunteer at Two Worlds Cancer Collaboration

 

We are thrilled to announce the launch of the Introductory Course for Pediatric Palliative Care Nurses in low and middle-income countries – a specialised, nurse-led training program thoughtfully designed by experienced professionals who understand the unique challenges of caring for children with life-limiting conditions.

This course marks a significant milestone in pediatric palliative care education, born from the collective wisdom and frontline experience of nurses who walk this path.

Pediatric palliative care requires a delicate balance of clinical expertise, emotional resilience, and profound compassion. Recognising that nurses are the backbone of quality palliative care, this program aims to equip them with essential competencies, evidence-based practices, and practical strategies to deliver holistic, family-centred support during life’s most challenging moments.

What makes this initiative unique is its nursing perspective — every session reflects real-world experiences, challenges, and the moments of grace and meaning that define pediatric palliative practice. It is for nurses, designed and delivered by nurses, — grounded in empathy, experience, and evidence. Together, we are building a community of compassionate, skilled nurses dedicated to ensuring every child receives dignified and loving care wherever they are.

 

Programme Overview

The Introductory Course in Pediatric Palliative Care Nursing (ECHO Series) is organised by the Sunflower Children’s Network, Two Worlds Cancer Collaboration (TWCC), in partnership with the International Children’s Palliative Care Network (ICPCN) and the Global Palliative Nursing Network (GPNN).

The course is led by Anu Savio Thelly and Dr Tara Devi Laabar, both volunteering for Two Worlds Cancer Collaboration, bringing deep expertise in clinical leadership, education, and international nursing collaboration.

This first-of-its-kind, nurse-led ECHO programme is designed to empower nurses in resource-limited settings through context-relevant, collaborative, and compassionate learning. Sessions are held every Monday from October 20 to December 8, 2025 (7:00 – 8:15 pm IST), connecting participants with global experts through the Project ECHO tele-mentoring model.

 

Inaugural Session

The course was inaugurated on October 20, 2025, with exceptional participation, with more than 100 nurses representing Asia, Africa, and South America, reflecting the programme’s global inclusivity and reach.

The inaugural ceremony featured inspiring messages from:

• Camara Van Breemen, Two Worlds Cancer Collaboration, Canada
• Marie Cooper, Global Palliative Nursing Network, St Christopher’s Hospice, UK
• Prof. Julia Downing and Alex Daniels, International Children’s Palliative Care Network (ICPCN, UK)

Their words celebrated the growing leadership of nurses in pediatric palliative care and emphasised the importance of global mentorship and solidarity.

 

Course Structure and Content

The eight-week series combined didactic lectures, interactive case presentations, and reflective dialogue, fostering learning, confidence, and community among participants. Didactic speakers and case presenters are expert faculties around the world. Each week, the didactic session is followed by a case discussion on the same topic, enabling participants to bridge theoretical understanding with real-world nursing practice. These cases brought global diversity to the discussions, enriching learning through shared experiences from varied cultural, social, and clinical contexts.

Date	Session Topic
October 20	Foundations of Pediatric Palliative Care
October 27	Pain in Pediatric Palliative Care
November 3	Holistic and Specialised Pediatric Palliative Care
November 10	Symptom Management Beyond Pain
November 17	Communication and Family Support
November 24	End-of-Life Care for Children
December 1	Grief, Loss, and Bereavement Support
December 8	Ethical Considerations in Pediatric Palliative Care

 

Acknowledgements and Future Directions

Special thanks to all the faculty who have kindly agreed to be part of the program from various time zones.

 

 

By Maria Liza T. Naranjo, M.D. and Rhea Angelica Jayma, M.D.

 

After three years of persistence and collaboration, the Philippines has taken a major step toward establishing its first Pediatric Palliative Care (PPC) Fellowship Training Program for pediatricians. On August 28, 2025, the Philippine Pediatric Society (PPS) met with the National Children’s Hospital (NCH) Pediatric Palliative Care Center to review the proposed two-year fellowship—marking a milestone in the country’s effort to develop pediatric palliative care as a recognized field of practice. The meeting brought together members of the PPS Executive Committee and Hospital Accreditation Board with the NCH PPC team, reflecting a shared recognition that Filipino children with life-limiting and life-threatening conditions deserve access to pediatric specialists trained in palliative care.

 

From Early Challenges to a Collaborative Breakthrough

This renewed engagement followed an initial pitch in 2022, which provided valuable lessons and recommendations. The PPC team took this feedback seriously, turning early challenges into opportunities for growth. To strengthen academic foundations, faculty completed the University of Ottawa’s Collaborative Online Medical Education Training (COMET) and later the Two Worlds Cancer Collaboration (TWCC) Pediatric Palliative Care Leadership Training, deepening expertise in curriculum design, mentorship, and program development.

At the same time, the NCH PPC service expanded from a ward-based program for children with cancer at the end of life into a comprehensive service spanning inpatient, outpatient, and home-based care. With dedicated PPC nurses, social workers, and physicians ensuring continuity of care, the team cultivated a strong culture of interprofessional collaboration. As the service matured, it also evolved into a rich learning environment, offering the clinical breadth, teamwork, and community engagement essential for a fellowship program to grow and thrive.

By 2025, this growth had been translated into a structured, outcome-based fellowship curriculum organized around defined learning domains and measurable competencies. During the August 28 meeting, PPS received the proposal with receptiveness and encouragement, acknowledging its maturity and national relevance. For the PPC team, the meeting felt like a partnership—a sign that dialogue had evolved from advocacy to collaboration.

 

Momentum and Milestones

The August presentation built on the success of the 2nd Pediatric Palliative Care Symposium in July 2025, where PPS expressed public support for developing PPC as a dedicated training pathway. It also precedes the International Children’s Palliative Care Network (ICPCN) Congress in November 2025, where Philippine stakeholders will participate in global discussions on PPC education.

As of this time, the PPS Hospital Accreditation Board is reviewing the PPC Training Manual submitted on October 1, 2025, and the NCH team is awaiting their recommendations.

 

Sustaining the Vision

The NCH Executive Committee, led by Medical Director Dr. Philip Morales, has affirmed institutional support for creating fellowship positions and administrative structures to sustain the program. This alignment of academic, service, and institutional efforts underscores that developing a fellowship is not merely an educational initiative—it is a step toward health-system strengthening.

With PPS, DOH, WHO, TWCC, and the Philippine Society of Hospice and Palliative Medicine (PSHPM) now working together, the establishment of a national Pediatric Palliative Care Fellowship Training Program is no longer an aspiration but an emerging reality.

 

 

August 28, 2025 NCH PPC Team meeting with the Philippine Pediatric Society

 

Pitching the PPC Fellowship Program to the National Children’s Hospital Executive Committee

 

Multiple brainstorming meetings with the NCH PPC Team on PPC Training Manual Development

By Maria Liza T. Naranjo, M.D, Adelina Uyvico, M.D. and Rhea Angelica P. Jayma, M.D.

 

On July 8–9, 2025, the National Children’s Hospital (NCH) Paediatric Palliative Care (PPC) Centre hosted the 2nd Paediatric Palliative Care Symposium and the country’s first Stakeholders’ Meeting for the Paediatric Palliative Care Fellowship Training Program at the Unilab Bayanihan Centre in Pasig City.

The two-day event gathered 168 participants, including paediatricians, nurses, social workers, educators, and NGO representatives, in a national exchange of ideas under the symposium theme “Building Resilience, Inclusivity, Dignity, Growth, and Empathy (BRIDGE) in Paediatric Palliative Care.”

Plenary sessions and workshops explored the psychology of suffering, cultural anthropology of illness, symptom management, advance care planning, and grief mapping, while Filipino paediatricians participated in an interactive Values Discovery Workshop to reflect on compassion and professionalism in clinical practice.

 

A Milestone Stakeholders’ Meeting

The highlight of the symposium was the Stakeholders’ Meeting on July 8, 2025, which set the stage for the proposed Paediatric Palliative Care Fellowship Training Program—the first of its kind in the Philippines.

Representatives from the Department of Health, Philippine Cancer Centre, Philippine Society of Hospice and Palliative Medicine (PSHPM), and Kythe Foundation joined the NCH PPC team, while the Philippine Paediatric Society (PPS) submitted written recommendations. International partners, including the Two Worlds Cancer Collaboration (TWCC) and the Brisbane PPC Team, also participated, lending expertise and global perspective.

During the meeting, the NCH PPC team presented the milestones of the NCH PPC Centre, charting its progress from service development to education and research. These achievements provided the foundation for the forthcoming PPC Fellowship Training Program, to be based at NCH.

The team also announced the development of a Training Manual to guide the fellowship’s structure, competencies, and learning outcomes to be submitted to the PPS Hospital Accreditation Board for review.

 

Commitments and Collaboration

Using the World Health Organization (WHO) Palliative Care Framework as a guide, participants mapped out their respective roles in strengthening PPC in the country. Each stakeholder identified focus areas that would support both service delivery and training capacity.

The meeting concluded with strong expressions of support, highlighted by the PSHPM’s commitment to endorse and collaborate in establishing the PPC Fellowship Program. The gathering also reaffirmed the importance of multi-sectoral partnerships in ensuring that PPC services and training are integrated into national health priorities.

 

A Collective Step Forward

Beyond strategic planning, the symposium also nurtured the spirit of empathy and collaboration among participants. Courtesy of TWCC, each attendee received a copy of the WHO Handbook for Paediatric Palliative Care, symbolizing shared ownership of the mission to advance PPC in the Philippines.

Positive feedback from participants underscored the event’s success—not only as a scientific meeting but as a unifying moment for the PPC community.

As the Philippines moves closer to launching its first Paediatric Palliative Care Fellowship Program, this landmark meeting stands as a testament to what can be achieved when vision, compassion, and collaboration converge.

 

By Adelina Uyvico, M.D., Rhea Angelica Jayma, M.D. and Maria Liza Naranjo, M.D.

 

The National Children’s Hospital (NCH) Paediatric Palliative Care (PPC) Centre in Quezon City, Philippines, stands as a testament to how national policy, visionary leadership, and global collaboration can translate compassion into sustainable care for children with life-limiting illnesses.

In 2019, two landmark laws—the National Integrated Cancer Control Act  and the Universal Health Care Act —recognized palliative care as an essential component of health services. These policies provided the foundation for NCH to formalize paediatric palliative care within its systems. Under the leadership of Medical Director Dr. Epifania Simbul, and advocates Dr. Yasmin Sulit and Dr. Maria Liza Naranjo, the hospital convened its first interprofessional stakeholders’ meeting together with Dr Agnes Bausa, becoming the impetus that would lead to the formation of the NCH PPC Team. Thereafter, Dr. Rhea P. Jayma was appointed the inaugural Chair of the Paediatric Palliative Care Centre, ensuring that the emerging service was grounded in family-centred principles.

 

Capacity Building and Global Collaboration

The centre’s evolution was propelled by a strong capacity-building trajectory that began with the training of three paediatricians at the WHO Collaborating Centre for Community Participation in Palliative Care and Long-Term Care at the Institute of Palliative Medicine in Kerala, India. This experience inspired Dr. Xiohara Gentica to pursue a transformative partnership between NCH and the Two Worlds Cancer Collaboration (TWCC), linking the Philippines with a global network of paediatric palliative care educators.

Under the mentorship of Dr. Megan Doherty and Dr. Gayatri Palat, TWCC provided structured one-year fellowship training for NCH pediatricians Dr. Gentica, Dr. Lannie Fofue, Dr. Adelina Uyvico, and Dr. Leicel Goyena. The program included rotations at the MNJ Institute of Oncology and Regional Cancer Centre and the Kumudini and Mandara Hospices in Hyderabad, complemented by academic sessions with TWCC faculty Dr. Stuart Brown, Dr. Spandana Rayala, Dr. Ross Pinkerton, and Prof. Camara van Breemen.

What made this model unique was its dual mentorship approach: while TWCC faculty delivered structured global training, Dr. Rhea Jayma guided local bedside mentorship, contextualizing lessons within Philippine culture and health-system realities. This synthesis of global standards and local wisdom produced the country’s first formally trained cohort of paediatric palliative care specialists—creating a ripple effect of education, advocacy, and clinical excellence.

 

(Pictured: The early days: A Stakeholder’s meeting)

 

Integration and Sustainability

Parallel to training, NCH institutionalized PPC by developing a Manual of Operations aligned with Department of Health (DOH) standards. In 2024, the DOH designated NCH as a pilot site for the national roll-out of the Manual of Operations, Procedures, and Standards for Palliative and Hospice Care. The hospital also became the Philippine iECHO Hub for Paediatric Palliative Care, extending mentorship and education nationwide. Sustainability is anchored on interprofessional staffing—dedicated PPC nurses and social workers ensure continuity of care across hospital and home.

Key Lessons Learned

The NCH experience shows that investing in people, creating spaces for mentorship, and embedding palliative care within policy frameworks transform advocacy into action. From Kerala to Hyderabad and back home to Quezon City, the NCH PPC story illustrates how compassion, collaboration, and courage can build a national model of hope and healing for every Filipino child.

 

 

 

 

 

 

 

 

 

(2^nd PPC Symposium (July 8-9, 2025)

 

Author: Dr Veena Anand, MD Paediatrics, M Phil clinical epidemiology, GFPM. Associate professor, Paediatrics, SAT, Govt. Medical college Thiruvananthapuram, Kerala, India.

 

Procedural pain in children remains one of the most difficult aspects of care for both kids and parents (1). I have seen how repeated painful procedure, even though medically necessary, can lead to lasting imprints of fear and suffering. I have come to understand the importance of both pharmacological and non-pharmacological strategies to lessen procedural pain for children and the need of holistic, family centred and team approach to ensure comfort for every child.

 

Introduction

In my early years of career as a paediatrician, I felt proud when I could do procedures with technical precision, inserting lines, catheters performing lumbar punctures, and performing procedures like bone marrow aspirations, fluid tapping, biopsies etc. But later when I came to palliative care, I realised that the procedure was not the only story. The kid’s anticipatory fear, the parent’s helpless gaze and shadow of previous painful procedures often defined the experience more than the needle itself.

Now as a paediatrician focused on paediatric palliative care, I see procedural pain management not just as a clinical task but as a responsibility. Every intervention we have to focus to maintain compassion, trust and dignity.

 

Understanding procedural pain

Procedural pain is mostly predictable, time bound but aggravated by anxiety. A child who remembers a painful iv cannulation in the past may resist even

before the alcohol swab touches their skin or even entering the place where it was given previously. Parents also anxiously recall these moments, often asking, “Can it be done more gently this time?”

Pain in this context also is multidimensional having physical, psychological, and social dimensions (1). Ignoring this increases the child and parent’s distress.

 

Pharmacological approaches

Paediatricians are rightly cautious with drugs, but caution must not become the reason for undertreatment. Practical measures include (1,2)

Topical anaesthetics (lidocaine prilocaine cream) for venous access.

Short acting opioids or benzodiazepines titrated for invasive procedures.

Proportional sedation, maintaining interaction and comfort, and not simply suppressing distress.

Protocols matter. Clear, anticipatory planning reduces distress, and it assures that comfort is not an afterthought.

 

Nonpharmacological measures

One of my most practical lessons from palliative care is that children often respond as much to their environment as to medication.

Distraction– blowing bubbles, music or tablets can shift attention

Comfort positioning– allowing parent to hold the child transforms restraint into reassurance.

Preparation-explaining the procedure in age-appropriate language, often with play therapy, reduces anticipatory fear.

These interventions do not replace analgesia, but they complement and dignify it.

 

Team dynamics and family involvement

No single professional can own this process. Nurses anticipate distress and suggest timing; psychologists and play therapists empower children; doctors balance necessity with gentleness. Families are not passive bystanders—they are active partners.

One mother told me, “It wasn’t the injection that mattered—it was that my kid felt respected and safe.”

This sentence remains etched in my clinical practice philosophy.

 

Common hurdles and overcoming them

Despite availability of procedural pain management protocols and growing awareness, several hurdles persist. Limited time in busy settings often leads to shortcuts, where analgesia or preparation is sacrificed for lack of time/staff shortage. Also, resource constraints such as unavailability of topical anesthetics or trained team can further limit options. Some professionals, under the pressure of workload, may underestimate or ignore the psychological dimensions of pain, focusing only on technical completion. Many a times, parents too aggravate stress by transmitting their own anxiety to the child. Overcoming these barriers requires proper planning: integrating pain management as a non-negotiable part of the procedure, ensuring that even small measures like comfort positioning or distraction are meticulously applied, and advocating for institutional policy in essential supplies and training. Building a culture where every team member feels responsible for the child’s comfort transforms pain management from an optional add on into a mandatory standard of care.

 

Reflections and Conclusion

My journey from paediatrics to palliative care has taught me that procedural pain management is less about avoiding pain sensation and more about cultivating an environment where the child feels safe, supported and respected.

As palliative care physicians, our goal is not only to relieve pain but also to preserve dignity in all the encounter; whether inserting a cannula or changing a dressing. Each procedure, when done with compassion and coordinated teamwork, becomes an act of care that extends beyond medicine to the very heart of human connection.

 

 

 

 

 

 

 

References: –

1. https://childkindinternational.org/childrens-pain-matters/last accesed on 03.10.2025
2. Olsen K, Weinberg E. Pain-Less Practice: Techniques to Reduce Procedural Pain and Anxiety in Pediatric Acute Care. Clin Pediatr Emerg Med. 2017.

 

 

By: Eddie Day, Parent Champion, on behalf of Courageous Parents Network.

 

When my daughter was diagnosed with a rare and life-limiting condition, my world changed in an instant. I was thrown into an unfamiliar place that I did not recognize—a world of uncertainty, fear, grief, and helplessness. As a father, I felt an overwhelming urge to fix it. That is what we do, right? We solve problems. We protect. We provide.

But what happens when the problem is your child’s illness—and it can’t be fixed?

I learned, painfully and gradually, that many fathers face this same moment. A child receives a devastating diagnosis, and suddenly everything you thought you were supposed to be—strong, stoic, solution-oriented—no longer fits. You are left standing in the middle of a storm with no map and no tools. Just love. And fear. And questions you cannot answer.

Paediatric palliative care helped me find my footing in that storm. No, it did not offer a cure. But it offered something else: a way forward. A way to be a father in the face of the unimaginable.

I was raised in a culture where men are expected to be fixers. When that instinct meets an illness that has no fix, it can shatter your sense of identity. I asked myself, “What did I miss?” “Did I do something wrong?” “Am I strong enough for my family?” These questions haunted me. And like so many fathers, I tried to hold it all in—to be “the rock” for everyone else. But that silence was not strength. It was suffering.

And that’s where palliative care came in.

Paediatric palliative care is not just for the end of life, it is whole-family support that starts at diagnosis. It is a team approach, with doctors, nurses, social workers, chaplains, and psychologists who are not just treating the child, walking alongside the entire family. They helped me make sense of what we were going through and gave me permission to feel what I was feeling.

They also helped me redefine what it meant to be a father during that time. I did not need to have the answers. I did not need to be strong in the traditional sense. I just needed to be there. Holding my daughter’s hand. Reading her a book. Sitting in the quiet moments. Advocating for her comfort. Loving her with everything I had.

That shift—from fixing to being—was the most profound transformation of my life.

Palliative care also helped ease the isolation I felt. As a father, I did not always have the same kind of built-in support network that my partner did. I did not know where to turn, or who would understand. But through counselling, peer support, and simply being invited into conversations I might have otherwise been left out of, I began to feel seen. Heard. Connected. Hearing another dad say, “I feel that way too,” changed everything.

My daughter passed away when she was four years old. That pain will never go away. But I will always be grateful for the support we received through palliative care. It did not remove the grief—but it gave me purpose. It helped me understand that love is not about fixing; it is about showing up every day, fully present.

Paediatric palliative care is not a cure—but it is a lifeline. For fathers especially, it provides a space to feel, to connect, and to redefine what strength looks like. We may not be able to fix everything—but sometimes, the most powerful thing we can do is simply be there. And in the end, that is more than enough.

 

Please also take a moment to read the previous Parent Champion story by Cathy Burk, on behalf of Courageous Parents Network.

icpcn.org/news/a-care-conference-is-not-just-a-meeting/

On this special day for children’s palliative care around the world – the annual #HatsOn4CPC campaign – we celebrate the amazing partnership between ICPCN and World Child Cancer and some of the impact that our joint project is already having in Ghana through the eyes of participants in the training programme and a parent with first-hand experience of the difference that good palliative care can make.

 

Even the smallest heads deserve hats-on care

Wearing a hat today means a lot to me as a midwife. I am wearing it in solidarity with all neonates receiving or in need of palliative care either in Ghana or abroad. On this special day, I would like to emphasize that neonates deserve comfort, dignity, and love because neonates have feelings too. Some babies are born with conditions that cannot be cured, or that require complex treatment from their very first days. Neonatal palliative care helps these babies live with as little pain and distress as possible, while supporting their parents through difficult decisions and emotional challenges. It’s not about giving up – it’s about giving the best care possible from the very beginning. To all the midwives out there, we have a role to play in ensuring that chronically ill babies are surrounded by warmth, compassion, and peace.

Evert Kersewa Adjei, Midwife, St. John of God Hospital, Sefwi Asafo-Ghana

 

 

From training to transformation: a story of how one idea sparked a play therapy clinic in the upper east region of Ghana

It’s just about a year ago when I had the privilege of attending a training on Children’s Palliative Care (CPC) organized by the International Children’s Palliative Care Network in collaboration with World Child Cancer. That experience opened my eyes to something deeply powerful – that every child living with a serious illness deserves not just medical care, but also comfort, play, and emotional support.

 After the training, I returned to my facility, the Upper East Regional Hospital with a renewed sense of purpose. I shared what I had learned with my team, and together, we began dreaming of creating a safe, joyful space where children receiving treatment could still be children.

 With support from the hospital management and the kind donation of Eastwood Anaba Ministries, that dream became a reality. We have established a Children’s Play Therapy Clinic – a place filled with colour, laughter, and healing moments for children and their families. To heighten the impact, we reached out to the Ghana Education Service, and they have nominated two professional teachers who volunteer alongside the healthcare professionals and psychologists. The teachers visit on a schedule and engage the children in creative arts and some therapeutic academic work.

Today, when I see a child smile during a play session or a parent breathe a little easier, I’m reminded why palliative care matters for children. It’s about life, love, and dignity – no matter how short or long that life may be. 

As we celebrate Hats on for Children’s Palliative Care 2025, I wear my hat with pride- for every child whose courage inspires us to care better, play harder, and hope stronger because truly every child deserves comfort, care, and a reason to smile.

Richard Addah,  Neonatal Nurse, Upper East Regional Hospital, Bolgatanga-Ghana

 

 

Teamwork Makes the Dream Work

Our hats are on today in recognition of the essence of teamwork in children’s palliative care (CPC).

CPC is never the work of one person- it is the harmony of many hearts and hands. Behind every child’s comfort is a team that works together with one shared goal: to bring relief, hope, and dignity to the child and family. Doctors manage symptoms, nurses provide comfort, psychologists offer emotional support, social workers guide families through difficult moments, and play therapists bring joy back into hospital rooms. When these professionals communicate and collaborate, care becomes more complete- meeting not just medical needs, but emotional, spiritual, and social ones too.

Teamwork in children’s palliative care also includes a workable partnership between the healthcare professionals and the child’s family. Families are not just recipients of support- they are partners in care. They know their child best: every smile, every signal, every change. Their insights guide healthcare teams to provide comfort that truly meets the child’s needs. When families are involved, care becomes more personal and meaningful. They help shape decisions, celebrate small victories, and find strength even in uncertainty.

We believe that on this special day, every healthcare professional should know that teamwork transforms care from a task into a community of compassion. It assures families that they are not alone, and helps each child live fully, surrounded by love and understanding regardless of their illness.

 

(Pictured: Paedics & Palliative Team, Tetteh Quarshie Memorial Hospital, Akuapem Mampong, Ghana)

 

 

On this special day of “Hats on for CPC,” I am deeply grateful for the extraordinary care and compassion my child now experiences.

I am a parent of a child with a life-limiting condition being cared for at Komfo Anokye Teaching Hospital. The support and care we receive there is truly remarkable. The staff communicate with me clearly in a way that I easily understand; they take time to counsel me, explain my child’s condition thoroughly, and ensure that I am fully informed. During difficult conversations, they respect our privacy and provide a quiet, comfortable space for us to talk.

What touches me the most is how they treat my child, with immense respect and dignity. They listen attentively to my concerns, show genuine empathy, and guide me in making informed decisions about my child’s care. Thanks to their unwavering support, I no longer feel alone on this journey.

I once asked one of the nurses how they manage to care for children with such challenging conditions without losing hope. She explained that they benefit from specialized training in children’s palliative care, which equips them with the skills and emotional resilience needed to provide such compassionate care. The healthcare professionals keep me informed and involved every step of the way. They understand my fears, support me emotionally, and work tirelessly to ensure my child receives the best possible care.

A parent caregiver at Komfo Anokye Teaching Hospital

 

 

Happy #HatsOn4CPC 2025 from all of us at World Child Cancer!

 

 

 

 

ICPCN has supported the strategic development of children’s palliative care in many countries during its 20-year history, providing a programme of focussed ‘in country’ support and working with partners on the ground to grow awareness of,  and build capacity for, children’s palliative care.  This ‘Anniversary’ article looks at one such project.

 

In October 2010, the UK Department for International Development (DfID) awarded a 5-year grant to Help the Hospices and ICPCN to improve access to palliative care for children in Malawi and the Maharashtra district of India, based on model programmes in each country.   ICPCN designed the project working together with Help the Hospices.

Project partners included the Palliative Care Association of Malawi (PCAM) and the Indian Association of Palliative Care (IAPC), The Umodzi CPC team at Queen Elizabeth Central Hospital (Malawi) and the Department of Palliative Care at Tata Memorial Hospital (India).  The overarching objective of the project was to improve the quality of life of children facing HIV and other life-limiting conditions and life-threatening illnesses.

In Malawi the development was based on the Umodzi model developed by the Department of Paediatrics at Queen Elizabeth ll Central Hospital, and now part of the Palliative Care Support Trust. The three development sites selected were the three other Central Hospitals in Malawi- Kamuzu in Lilongwe, Mazuzu in the northern region, and Zomba in the southern region.

In Maharashtra the model selected was the Tata Memorial Hospital’s Palliative Medicine Department‘s CPC programme. Three very different hospital programmes were selected: one was in Lokmanya Tilak Municipal General Hospital at Sion in Mumbai where the project was integrated into the Paediatric HIV Clinic; the second site was at a rural hospital in Jawhar, Thane, linked to four primary health care centres and a community programme; the third site was the Mahatma Ghandi Hospital, a public-private partnership hospital in Navi Mumbai with outreach into the villages.

The project prompted commitment to children’s palliative care service development above and beyond the original project scope and demonstrated how international partnerships can inspire and promote others to take on palliative care to meet the huge need for palliative care around the world.

Project mentor from India, Dr Mary Ann Muckaden reflects on the impact of this landmark project in her country:

“Prior to the initiation of this project, there was very minimal provision of Children’s Palliative Care (CPC) in Maharashtra, a populous State of India; and what did exist was mainly for children with cancer, at Tata Memorial Centre.  The project demonstrated the need for CPC in varied sites and this practical experience sensitized both medical professionals and government stakeholders which, in turn, empowered local healthcare workers to provide CPC. Funding needed to be transferred locally to government over a period of time.  The three project sites enrolled children with HIV, Thalassemia, Cerebral Palsy & MR, Juvenile Diabetes, Severe Malnutrition, and End stage organ failure.

Joan Marston, CEO of ICPCN was the Primary Mentor and guidance was provided by myself from Tata Memorial Centre, Dr Anilkumar Paleri (IAPC) and Kate North (Help the Hospices), whilst Dr Pradnya Talawadekar (Country Co-ordinator) and Melba Cardoz (Social worker) ran the project from 2010 to 2015. ICPCN supported our work by guiding, encouraging and building the international network.

As a result of the project:

• More than 1000 families received holistic care to improve their quality of life.
• Training was given to around 1200 doctors, nurses, social workers, psychologists and caregivers and more than 800 health care workers were sensitized to the Principles of CPC and the use of Morphine, as a pain relieving medication.
• The laws around Narcotic procurement and dispensing (NDPS Act) were amended with the efforts of many key Indian stakeholders.
• Documentation was collected which enabled us to publish papers and give conference presentations about the project.[i]
• A palliative medicine component was included in both the undergraduate medical and post graduate curriculum of Paediatrics and General Medicine.
• A Government Resolution was passed for the inclusion of palliative care in the health policy of the Government of Maharashtra in 2013.

We sincerely believe that the continued presence of ICPCN in these meetings with the Health and Women and Child ministry, along with the Indian CPC team, contributed significantly in this achievement, along with inroads into policies at the Central Govt. level.

Two of the three projects are still running today with funding from the Govt. of Maharashtra and fifteen years later the training of medical students and paediatric post-graduates  has gained huge momentum.

The ICPCN resources, networking and commitment to strengthening CPC in India have played a very key role in continuing  our work, both in Maharashtra and the rest of the country over several decades.  They gave us the confidence to approach local funders, which continues till today.  Thanks ICPCN for this key role; may we progress from strength to strength together.”

 

By Lizzie Chambers, Programme Manager, ICPCN.

 

[i] Setting-up a Supportive and Palliative Care Service for Children with Life-threatening Illnesses in Maharashtra – Children’s Palliative Care Project in India – PMC

 

 

Authors: Dr Nisha Jyoti Shrestha & Bandana Adhikari

 

Children’s Palliative Care is one of the newest additions to the subspecialty care at Kanti Children’s Hospital (KCH) in Kathmandu. As the only tertiary paediatric hospital in Nepal, KCH is a national leader in shaping child health. KCH provides sub-specialty care in paediatric medicine and surgery, and this now includes outpatient and inpatient palliative care. Beyond clinical care, KCH also focused on providing specialized paediatric training including: paediatric nurses (short term course), Bachelor in Critical Paediatric Nursing (3-year program), and a variety of specialized training opportunities for physicians.

When palliative care services were initiated at KCH, services were limited to the oncology unit. Since palliative care was a new topic for most health care professionals, many clinicians assumed that palliative care was only needed for children with cancer. However, over the past few years, we have been working to correct this misconception and expand access to palliative care for children with other serious or life-limiting conditions throughout the hospital.

In January 2025, we were excited to be accepted into the second cohort of the Children’s Palliative Care Leadership program, an exciting leadership training program for clinicians and program staff from across South Asia. We travelled to Hyderabad, India for a leadership workshop in January and returned to Nepal with plans to focus our leadership project on building palliative care knowledge and skills among paediatric clinicians.

In our leadership project we planned a series 3-day workshops on children’s palliative care, aiming to reach 100 clinicians in total. We planned to include participants from key health facilities in the Kathmandu valley, to expand knowledge of key palliative care concepts beyond KCH.

The project started with an inception meeting with our hospital administration with director, matron (chief nursing officer), finance staff, and heads of department. With their support, we held our first training workshop on May 19-21, 2025. The workshop trained 25 participants- 16 nurses, 8 doctors (medical officers, paediatrician, surgeons, anaesthesiologist, psychiatrist), and 1 social service staff member. To evaluate each workshop, we planned to administer pre- and post- tests to assess participants’ knowledge and attitudes towards palliative care.

With the success of the first training, we excitedly started planning the second training. In addition to nurses and doctors, the second training included one physiotherapist from the local rehabilitation centre. As the workshop faculty become more experienced and familiar with the content, we began to make the training more interactive, using role plays and interactive sessions instead of simply delivering lectures.

Fundraising and financial sustainability were emphasized as important topics in the Leadership Program, and we needed to incorporate these into our leadership project activities. To do this, after the second workshop, we began trying to raise funds locally for the project. This was a huge challenge for us, as technical people, at first, we were uncomfortable asking for money. We worked on our “elevator pitch”, and we finally were able to secure support from City Xpress Money transfer and Ramesh Gupta Memorial trust. These funds allowed us to conduct the third workshop. We enhanced the third training by inviting a neonatologist to present about perinatal & neonatal palliative care, strengthening engagement with this important specialized area.

Some of the key lessons we have learned from the training include: inviting partners to participate as faculty and learners to build stronger relationships and better coordinated clinical care, adapting training to participants’ needs, and keeping the formalities portion of training short to maximize the learning period. As leaders, we also learned how to guide faculty to work together, streamlining pre-training preparations, onsite technical troubleshooting, and post-training tasks. We practiced key strategies including dividing up our tasks, seeking help from mentors, and having a “growth mindset”. In growth mindset involves believing that through dedicated effort, learning, and persistence, we can improve our skills, in this case, to deliver palliative care training.

Now we are preparing to conduct the fourth and final training workshop. We are already seeing the impact of the training- by planting the seeds of “palliative care” in the trainees, they are starting to understand that care is possible even when cure is not.

We are looking forward to sharing the complete results of our leadership program when we return to Hyderabad, for the final leadership workshop in February 2026.

 

By: Cathy Burk, Parent Champion, on behalf of Courageous Parents Network.

 

In my professional life, I have led numerous meetings, many of them with pivotal decisions or necessary outcomes, but never have I felt such great mental and emotional weight as at the initial care conference with my firstborn’s medical team. The experience came while my daughter was in the NICU for almost a month after a non-eventful pregnancy and a smooth delivery. After a surprise rare genetic diagnosis and prolonged breathing tube placement, our family was eager to discuss the direction of our daughter’s care.

A care conference is a meeting of the patient and family with the health care team. Care conferences are often convened when a hospital stay is long, there are complex medical problems or something in the patient has changed unexpectedly.^[1] I first learned about the concept of a care conference from our palliative care team, who recommended we initiate one after multiple failed breathing tube extubation attempts. Instinctually, I knew we needed this meeting, but I was nervous because I understood it would set the direction for my daughter’s care, and the outcomes of the meeting could impact my family significantly. I was also nervous because I didn’t know what questions were reasonable to ask, and I did not know if the busy clinicians would think it was a waste of their time for me to ask questions like when/whether my intubated one-month-old would be able to receive physical or occupational therapy. I felt inadequate because I thought I was supposed to “own the meeting” because it was about my child. Fast forward five years and nearly a dozen care conferences under my belt, I still feel nervous for similar reasons. Luckily, our palliative care team always makes me feel it is reasonable to request a care conference and reminds me that my questions – big or small –  have a name – advocacy.

At my first care conference, I leveraged my professional background to develop an agenda. I included a title, the time and place, and the attendee list. I included our top priority questions and listed secondary questions. I usually don’t add colours to the agendas, but I chose a colourful template. After all, this wasn’t an ordinary meeting, and having an organized agenda with a bit of personality increased my confidence as the meeting approached. If I could not control the outcome of the meeting, at least I could control the colour of the agenda. To this day, I still follow a similar structure, even when we have the conference as an outpatient.

But truthfully, having the “perfect agenda” does not always quell my worries. Recently, we held a care conference with nearly 30 participants. I still felt nervous, even though we have a trusting relationship with everyone who attended the meeting. I experienced the same feelings of inadequacy and prepared hard for weeks on how to run the meeting effectively, especially as there were many issues to address in only an hour. With such a large group, I wanted to include a lot of contextual information in the agenda so everyone could have a fair view of my daughter’s quality of life. I even planned to bring treats for a virtual meeting – a positive addition to the meetings I implemented early on. But in all this planning and self-imposed pressure to run the leanest care conference for a dynamic, thriving individual with very complex medical needs, I forgot to give myself heart space to be her mother—a mother who has gained so many caregiving and care conference skills but also has scary memories of my child nearly dying multiple times. I began to realize that if I didn’t give myself the heart space to be a mother who cannot control the outcomes, my head space could be too full and chaotic to be the parent my daughter needed me to be present with her for the time we do have together.

To help me declutter my mind, sort my emotions, and find space to be my daughter’s mother first and her care coordinator second, I once again turned to our palliative care team. Our palliative care doctor and nurse allowed me to talk through the topics I wanted, not expecting my thoughts to be neat or structured. They met where I was – not just emotionally but literally – my daughter was in the CT scan room under anaesthesia, and they came to find me in the waiting room. They even walked with me to a nearby eatery after they learned I had skipped breakfast to get my daughter to the early morning appointment. They allowed me to feel comfortable, both physically and mentally. And in that comfort, I was able to narrow down what I wanted to cover, prioritize agenda items, and worry less about being the perfect meeting organizer.

Experiencing a care conference is something a parent rarely forgets, regardless of how many times they attend one or how familiar they are with the medical system.^[2] Understanding the special emotional weight care conferences carry for parents is a critical piece of the effectiveness of a care conference.  I am fortunate to have our palliative care team to process with and walk alongside me as I face all my daughter’s future care conferences.

 

 

^[1] Nationwide Children’s Hospital. Care Conferences for Families. https://www.nationwidechildrens.org/family-resources-education/health-wellness-and-safety-resources/helping-hands/care-conferences-for-families

^[2] Palliative care: I was able to unburden my worries to one person … and then the care conference allowed us to talk about everything. CPN. (n.d.). https://courageousparentsnetwork.org/videos/palliative-care-i-was-able-to-unburden-my-worries-to-one-person-and-then-the-care-conference-allowed-us-to-talk-about-everything

 

 

By Lindsey Topping-Schuetz on behalf of Courageous Parents Network.

 

At Courageous Parents Network (CPN), we believe that family stories are powerful tools for change. For parents of medically complex children, sharing lived experiences can ease isolation, offer guidance, and inspire hope. For clinicians, these stories reveal the realities of care beyond the hospital, underscoring the psychosocial and emotional needs of the whole family.

Through these stories, CPN has long promoted pediatric palliative care as an essential layer of support for families navigating serious illnesses.

 

Building Champions for Palliative Care

In 2023, to expand its reach, CPN launched the Parent Champion Program—a first-of-its-kind initiative that trains and supports parents to become advocates for palliative-informed care. The program equips parents to share their personal journeys in ways that both comfort other families and educate clinicians and patient organizations.

The inaugural cohort of six Parent Champions represented diverse diagnoses and family experiences. Some of the parents were bereaved, others were still actively caregiving, but all shared the desire to use their hard-earned wisdom to benefit others. Together they took part in intensive training in Boston, building skills in storytelling, advocacy, and presentation—and finding deep connection with one another in the process.

As one Champion reflected, “To be in community with others walking a similar journey was invaluable. We often feel isolated as parents and caregivers. This program gave us not only tools, but also a community that understands.”

Over their 16-month term, Champions delivered more than 20 presentations to clinician groups, professional conferences, and family organizations. Their stories illuminated the benefits of pediatric palliative care and helped spread awareness of CPN resources across the country.

 

A Parent’s Perspective

I first learned about the program as a parent myself. After my son Owen’s rare diagnosis, I left my career to become his full-time caregiver, nurse, and advocate. Like many families, we found our footing when we met our palliative care team. They brought back hope at a time when we felt only fear and uncertainty.

When I applied to be a Parent Champion, I was nervous—it had been years since I had worked outside my caregiving role—but I was excited by the chance to amplify our story. The experience was transformative. Through the training and mentoring I received, I found new confidence as an advocate, and I saw how my story could be part of a greater story—one that builds bridges between families and clinicians.

Today, I have the privilege of helping to lead the Parent Champion Program. Walking alongside new Champions as they find their voices and make an impact has been one of the most meaningful parts of my journey.

 

Expanding the Program

With the success of the first class, CPN recently launched its second application cycle and received over 60 applications from three countries. Applicants included mothers, fathers, bereaved parents, and even clinicians who are also parents of medically complex children. Each story was unique, but all reflected the same motivation: to use lived experience to empower others and to elevate the importance of palliative care.

 

Moving Forward

The Parent Champion Program is expanding CPN’s impact in ways our small team could never have done alone. It ensures that families and clinicians hear directly from parents’ voices that inspire, educate, and advocate for palliative-informed care.

For me, and for the many Champions who have stepped forward, this work is about helping families spend more time living fully and less time struggling with the weight of medical complexity—supported by the compassionate care that palliative care provides.

 

This family business is founded and led by Jenny Froehlich, a global expert in Panama hat production with over 30 years of experience. Originally from Ecuador, Jenny brings knowledge, passion, and love for the craft and for the people who create these timeless works of art. Her daughter, Mavi, with 20 years of experience in global multinationals, shares the same passion and expertise. Together, they handcraft Panama hats for customers around the world who appreciate the elegance of a genuine Panama. Their dedication, artistry, and love for the craft shine through in every hat and in the hands of the people who uniquely weave them in Ecuador

Friday 10th October 2025 is a day to raise international awareness of the need for children’s palliative care and the work of Children’s Palliative Care (CPC) services worldwide. This year, we ask you: “What hat will you wear to close the gap and celebrate our 20th birthday?”

As we celebrate our 20th Anniversary, we’ll reflect on milestones achieved in 2025 and beyond while highlighting the gaps that still exist, supported by data from our recent global mapping of CPC development: https://icpcn.org/mapping-cpc-development/

To mark this special anniversary, the Panama Hat Company is generously donating a unique handmade Panama hat. Every donation made through our Global Giving campaign to transform children’s palliative care enters you into a draw to win one of these exceptional hats. Please donate today: https://www.globalgiving.org/projects/transforming-global-childrenss-palliative-care/

Most importantly, every donation helps improve children’s palliative care worldwide through Communications, Advocacy, Research, Education, and Strategic Development for the 21 million children living with life-limiting conditions.

Our heartfelt thanks go to Jenny, Mavi, and the Panama Hat Company for supporting #HatsOn4CPC, raising awareness of this vital global campaign, and highlighting the urgent need to improve palliative care for children worldwide.

 

For more information about the Panama Hat Company, please visit: https://panamahats.co.uk

More details about this years Hats On For CPC event, that takes place next week, can be found here: icpcn.org/hatson4cpc/

 

#HatsOn4CPC2025 #ICPCN #PanamaHatCompany #ChildrensPalliativeCare #GlobalGiving