EPEC Paediatrics Workshop at the 7th International African Palliative Care Conference 2022

A combined EPEC (Education in Palliative and End-of-Life Care) Paediatrics End User and Leadership Workshop was held prior to the 7^th International African Palliative Care Conference in Kampala, Uganda. The workshop was held at the Mestil Hotel Kampala and was attended by 55 participants from Benin, Botswana, Burkina Faso, Cameroon, Ghana, Kenya, Malawi, Nigeria, Senegal, South Africa, South Sudan, Tanzania, Uganda, Zambia, and Zimbabwe. The workshop was run by the African Palliative Care Association (APCA), International Children’s Palliative Care Network (ICPCN) and the St Jude Global Palliative Care Program, and was funded by St Jude Children’s Research Hospital.

End user EPEC workshop group

34 participants undertook the end-user EPEC workshop including doctors, clinical officers, nurses, pharmacists and social workers. The majority (21) were from Uganda, from a range of organisations including: Kawempe Home Care, the Uganda Heart Institute, the Uganda Cancer Institute, Kirrudu National Referral Hospital, St Francis Hospital Nsambya, Mulago National Referral Hospital, Yumbe Regional Referral Hospital, Mildmay Uganda, Mbarara University, and the International Rescue Committee. A further 21 participants undertook the leadership workshop which was run concurrently with the EPEC workshop. The groups participated in several combined sessions as well.

Group work

At the start of the workshop, all the participants introduced themselves, sharing their experience in children’s palliative care, and where they work. Following this, the first session was led by Prof. Julia Downing from ICPCN, who started off by exploring what children’s palliative care (CPC) is and why it was needed. From the start, the participants were involved, participating enthusiastically, sharing their thoughts and ideas. The participants were then divided into the two groups, with the end user group addressing the issue of multimodal analgesic management with Dr Michelle Meiring from the University of Cape Town in South Africa. The participants had many questions, and Dr Michelle was able to share her experience and discuss options when access to medicines was limited. Dr Mike McNeil from St Jude Global then followed this with a discussion around general symptom management and in particular highlighted respiratory symptoms. Alongside this, Professor Downing and Dr Baker led the participants in the leadership workshop through a discussion about the status of children’s palliative care across a range of countries. Each participant gave a short presentation, highlighting what was happening in CPC in their country, along with the need for CPC, and estimated the level of development according to the four categories identified in the global atlas. It was fascinating to hear of developments, along with similar challenges and opportunities across the region.

Dr. Justin Baker ICPCN Board member and Prof. Julia Downing ICPCN ED

Dr Justin Baker, from St Jude Global then gave a short presentation to both groups about the management of neuropathic pain, He discussed points related to managing neuropathic pain, and shared tips from his clinical experience. The day ended with a session on team collaboration. For this session, participants were divided into 6 groups, with each group being given 15 minutes to develop their ‘CPC Spirit animal’. They had various resources available to help with this including newspapers, coloured paper, crepe paper, pens, balloons, party hats, and streamers. A range of animals were developed including an elephant, a rabbit, a bear, two lions and a butterfly. Participants spoke, sang, and danced their way through their presentations, demonstrating great creativity as well as teamwork. Group 3 (the BEAR) won the event for their creativity and song/dance as well as their lively bear enactment.

Day 2 saw the participants split into their two groups from the start. Participants in the end user group explored the management of fatigue, psychosocial and psychological symptoms, neurological symptoms, refractory symptoms and end-of-life care with Drs Justin and Mike. Meanwhile Prof Julia and Dr Michelle spent the day with the leadership group. Having finished off the country presentations, they highlighted issues that arose from the discussions which were then explored by the group including: Policy issues and sustainability; research priorities; education, mentorship, and support; access to medicines; needs assessment; issues around integration and how we can support each other.

After lunch the two groups came together again to discuss issues around self-care for professionals, exploring issues around vulnerability, burn out and support. Several people shared their stories and experiences to encourage and inspire others. The End User group then explored issues around communication and planning with Dr Justin and Dr Mike, undertaking scripted role plays and exploring issues around communicating with children, along with communicating challenging information. At this stage the leadership group undertook a SWOT analysis (Strengths, Weaknesses, Opportunities and Threats) for CPC development across the region. Having done this together they identified priorities for the next 1-2 years, and 3-5 years, discussing and highlighting key priorities. There was discussion with regards to the African Children’s Palliative Care Network which is co-ordinated by ICPCN and APCA, and it was suggested that this is revitalised now that the pandemic is improving. Prof Julia will liaise with APCA and they will be in touch in the near future about this.

Participants came together for the closing of the workshop, prior to a cocktail which was held by the pool. The workshop was a great opportunity for sharing and discussing issues of CPC. There was a lot of energy in the room and participants appreciated the opportunity to meet together, discuss and share experiences.