There was a buzz in the air as over 480 delegates, representing 26 countries, converged in Johannesburg recently to attend the 15th Biennial Congress of SIOP Africa 2014. The theme for the Congress, “Towards 2030”, references the goal of the WHO Global Initiative for Childhood Cancer of increasing the survival rate of children with cancer globally to at least 60% by 2030 while reducing their suffering and improving their quality of life.
The Scientific and Local organising committees, chaired by Prof. Jennifer Geel and Prof. Gita Naidu respectively, had worked hard to develop a programme that promised to engage and inspire everyone who had signed up to this hybrid event. Pre-Congress workshops addressed a range of topics including neuro-oncology, paediatric surgery, paediatric oncology pharmacy, nutrition, haematology, paediatric radiation oncology, implementation science in relation to Acute Lymphoblastic Leukaemia (ALL) and Retinoblastoma and SIOP global mapping.
A vibrant, inspiring opening ceremony set the tone for the congress with the esteemed Prof Ashraf Coovadia, Academic Head of Paediatrics and Child Health, University of Witwatersrand, South Africa, encouraging participants to actively participate in meaningful dialogue. The illustrious SIOP Africa President, Dr Joyce Balagadde Kambugu, reminded us of SIOP’s vision: ‘No child should die of cancer: cure for more, care for all’, she acknowledged the ‘fantastic work’ that was being done despite challenges and constraints. The MEC for Health in Gauteng, Nomantu Nkomo – Ralehoko, spoke about the role of government in supporting the 2030 goal and raised the importance of palliative care. Dr. Asim Belgaumi from Pakistan, the Scientific Chair for SIOP International, inspired by the energy and melodies of Asimazim8, who provided live entertainment during the opening ceremony, urged the audience to ‘sing the songs for improvement in childhood cancer’.
Presentations on Paediatric Palliative Care (PPC was integrated into the supportive care track on day 1 and into the nursing, civil society and patient tracks for the rest of the congress. On day 1, Obokeng Ramphaleng reported that despite attempts to develop PPC, through a private public partnership in the country, funding remained a serious challenge in Botswana. Nzazi ABI shared findings from a study conducted in the Democratic Republic of Congo (DRC), that aimed to assess the current situation of end of life of children and adolescents with cancer. The study revealed low cure rates and high death rates, with only 97% of children with childhood cancer in the DRC being diagnosed. Ane Buchner shared her work that looked at the use of palliative chemotherapy in South Africa conducted through a national survey of paediatric oncologists. This work concluded that, whilst palliative chemotherapy achieved its aim to improve the quality of patients, there is great variation between opinion and experiences of paediatric oncologists.
Tilana McLoed, mother of Bella, kicked off the nursing track with a heartfelt presentation. Bella was diagnosed with ALL at the age of 2 years and is a busy teenager currently ‘living life to the fullest’. Tilana shared an important message for healthcare professionals that included highlighting the value of facilitating connections between parents who have undergone similar experiences and providing accurate information in layman’s terms to parents. Other presentations in this track included ‘Perspectives and expectations of informal caregivers’ in relation to a patient navigation programme in Ghana, ‘Caregivers perspectives on late effect and follow up of childhood cancer survivors in Kenya’, and details of a study conducted by ICPCN and World Child Cancer (WCC) on a ‘Needs assessment and situational analysis for children’s palliative care in Ghana’. Michelle Meiring had the final word on PPC for the day with an insightful presentation that raised an important topic: ‘Ethics in PPC’.
On Day 2, the civil society and patient track featured a range of interesting presentations from Malawi, Kenya, South Africa, Botswana, Zimbabwe, Tanzania and Uganda. Cultural beliefs and indigenous knowledge emerged as a strong theme with Maripfonde reporting on the cultural implications to care and treatment of paediatric cancers in Zimbabwe, Mbuyane discussed the role cultural beliefs played in delaying diagnosis and treatment abandonment in South Africa and Sosame explored cultural and traditional themes that had emerged in counselling sessions with caregivers of children in paediatric oncology in Botswana. Erin Das brought siblings into the spotlight by sharing details of a sibling visitation programme that had been facilitated by child life specialists to enhance holistic children’s palliative care in Kenya. Against the backdrop of 1 200 children who develop cancer in Ghana, and only 1/3 being diagnosed in a year, Ayire Adongo discussed the effectiveness of early warning signs and symptoms training in Ghana. Sensei Moses Sebopa shared details of a global initiative, Kids Kicking Cancer, an innovative programme that uses marital art, meditation and breathwork to empower children beyond the pain and discomfort of disease. This programme is active in 9 countries worldwide and in 17 hospitals in South Africa.
Karen Van Zijl started off the civil society and patient track on the final morning with an informative talk on medical puppets and shadow buddies. Cally Daniels-Howell described Mama Brian’s disturbing narrative that included having to wait several weeks to bury her child in Kenya. Jonita Ntlhaile, a child life specialist from South Africa, described the importance of legacy making as a tool to help families connect, remember and gave them a sense of control. Priscilla Nambaiirwa discussed how schools and students can be involved in cancer control. Fentle from Ethiopia shared some the challenges related to the integration of PPC in his country and Christine Edan shared details of a programme to adopt a palliative care approach and build capacity for health professionals in French-speaking African paediatric oncology units.
The SIOP Africa Congress 2024 provided a unique opportunity for attendees to expand knowledge, foster existing relationships and to develop new partnerships and friendships with colleagues from the continent and beyond. There were several announcements at the end of the Congress including that Prof Jennifer Geel was the new SIOP Africa President, and that the city of Abudja, Nigeria would be hosting the next SIOP Africa Congress in 2026.
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