Despite a relatively well-established hospice and palliative care service in Kenya, with more than 100 facilities offering a range of services, only a few facilities provide specialised paediatric palliative care (PPC). In 2023, the infant mortality rate was 37.2 per 1000 live births with birth asphyxia as the leading cause of infant deaths. Children with a range of paediatric conditions including HIV, prematurity, congenital abnormalities, injuries and cancer are said to benefit from a palliative care approach in Kenya. It is through the persistent work of pioneers and champions in the field that more attention is being given PPC
At the end of November, the Kenya Hospices and Palliative Care Association (KEHPCA) hosted a PPC training workshop for health and social care professionals. This project was funded through their My Child Matters Grant. The workshop was held in Nairobi and was made possible through collaboration with St. Jude Children’s Research Hospital, the ICPCN, PrinsesMáxima Center, Global Treehouse Foundation, The Ministry of Health, Kenyatta National Hospital, and Moi Teaching and Referral Hospital.
A diverse multi-disciplinary team of local and international trainers facilitated the workshop. Local facilitators included Roselyne Omolo, Dr Esther Nafula, Elizabeth Kabuthi, Dr Irene Nzamu, Dr Esther Muinga, Lameck Odera and Reverend Kanyi. International facilitators included Dr Marilyn Hockenberry (US / Malawi), Mercy Butia (Malawi), Dr Michael McNeil (US), Erin Das (Canada /Kenya), Dr Marienne van de Wetering (Netherlands) and Alex Danels (South Africa).
On a rainy November morning, 31 health and social professionals from 21 facilities gathered at Grace House Resort in Kilimani, Nairobi for the five day in-person training workshop. Cadres attending included nurses, doctors, clinical officers and medical social workers. Prior to the workshop, all participants had undertaken an online training course in PPC though the Global Hope platform.
David Musyoki, KEHPCA’s Executive Director officially opened the workshop. He encouraged participants to embrace the opportunity to improve their skills and knowledge and challenged them to explore attitudes towards caring for children with palliative care needs. Dr Beryl Odose contextualised the workshop by providing a brief overview of the Wana Watunzwe (WAWA) Project. A key objective of the project is to equip health care workers with essential skills in PPC.
Roselyne Omolo laid the foundation for paediatrics in her presentation on the basics of child development emphasising key principles of growth and development. In a brief introduction to PPC, Alex shared how children’s palliative care is developing around the world and some of the challenges to its development creating an opportunity for discussion around local challenges. In an important session on communicating with children and families, Dr Marilyn and Mercy used role plays and case studies to demonstrate the key elements needed to communicate effectively in a palliative care context. In an inspiring session on psychological aspects in PPC, Elizabeth and Erin discussed various coping strategies to help children manage their emotions and shared practical ways to help families create meaningful memories and legacies that provide comfort and connection. In the last session for the day, Alex introduced key concepts in neonatal PC, and it was interesting to hear some of the specific cultural challenges participants experienced when identifying babies with palliative care needs.
On day 2, Dr Michael’s virtual presentation was well received. He stressed the need for high-quality clinical assessment to prevent and reduce suffering in children and reminded us of the importance of integrating compassion in our work. Participants were presented with various case scenarios and under Erin’s guidance group discussions ensued which required the application of key concepts raised in Dr Michaels’ presentation. Later in the morning Dr Marilyn explored paediatric pain assessment; outlining different types of pain, some associated myths and common pain assessment tools used for children. Mercy guided the group through the key concepts in pain management emphasising the need for good assessment to ensure effective management. After lunch, Alex shared two recommended WHO guiding documents to be considered when integrating children’s palliative care into health care systems. The first guide was developed to help implementers, health planners and managers integrate PC in paediatrics and the second one is a guide on integrating PC into humanitarian emergencies and crises. In an interesting session on Quality Improvement (QI), under Dr Marilyn’s expert guidance, the group optimized an opportunity to develop their own SMART specific aims for a QI project.
In an engaging discussion on Day 3, Dr Irene raised the unique challenges facing adolescents and young adults (AYA) with a special focus on their PC needs. She concluded that PC is especially important for AYAs with cancer due to the survival gap, high symptom burden and ‘goal concordant care ‘at the end of life. The session on AYA’s linked well with a later session on care transition and survivorship that looked at the relevance of survivorship as part of cancer control continuum in Africa and the difficulties AYA’s face with re-entry and stigmatization in society highlighting the need for increasing cancer survivorship awareness in schools and communities broadly. Throughout the week a colourful assortment of books, toys, dolls had been displayed in the room and participants were encouraged to engage with these resources. In an inspiring presentation on the integration of child life practices in CPC, Elizabeth shared her experience of involving families especially siblings and raised the importance of play and creative expression as essential and accessible tools to help children cope with illness and emotional challenges. The day concluded with an important session facilitated by Dr Esther Muinga on breaking bad news using the SPIKES protocol with participants having an opportunity to engage in various role plays.
On Day 4, expert faculty members explored the role of PPC in Oncology, Neurological Conditions affecting Children and their Families, End of life care and Family centred care in CPC. The final day of the workshop focused on more key concepts and topics covered included Grief and bereavement, Culture and spirituality in CPC and Self-Care.
Throughout the workshop participants were actively engaged responding positively to requests to role play, partake in numerous group work activities and discussions generally. Most importantly, the workshop offered participants a unique opportunity to connect and network with colleagues and through this vibrant exchange of professional experiences the collective will and commitment to build palliative care services for children and their families in Kenya was strengthened.
Well done to the KEHPCA team and especially to Dr Beryl Okose for coordinating an important workshop that holds the potential to catapult equitable care for children and families in need. Asante Sana.
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