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Sharjah:
Interactive sessions held at the Global Forum on Non-Communicable Diseases for Children and Youth, shed light on the key pillars of care during childhood cancer, benefits of cancer prevention campaigns and the need for national and regional advocacy of NCDs. The sessions, titled ‘Cancer in Focus’, took place during the two-day forum organised by Friends of Cancer Patients (FOCP) at Al Jawaher Reception and Convention Centre (JRCC).
The first session spoke about the essentials of community-based cancer care and how to improve health literacy among families living with childhood cancer.
The workshop was spearheaded by Carmen Auste, Managing Director at Cancer Warriors Foundation Inc. (CWFI), Julia Downing, CEO of the International Children’s Palliative Care Network (ICPCN), Ezra Anecho, from the Uganda Cancer Institute and Uganda Child Cancer Foundation (UCCF), Victoria Watson, Health Policy Analyst at the Washington D.C. Center for Health and Gender Equity and Maia Olsen, Program Manager at NCD Synergies.
"Health literacy in the context of paediatric cancer care is as important to the patient as it is to the family or the community caregivers," Watson started. "Receiving a cancer diagnosis is incredibly fearful and it is pivotal to have health literacy tools, resources and optimal physician-patient communication during every stage of treatment. Patients and families should be aware of what to do as they enter into either cancer survivorship or palliative care."
Olsen, who works with children in Rwanda and Malawi commented, "Kids can live a longer life if they get access to proper care. It forms an integral part of the treatment process." She went on to explain how certain communities tend to shy away from treatment as they are not aware of all their options and what to expect.
On the topic of palliative care, Dr Downy stated that, "What we need to realise is that palliative care should be going alongside curative care - it shouldn't be optional." On the topic of providing home-based palliative care, she shared, "We must ensure that we make home-based care available for all children. Children want to be at home during times of illness. We have to make sure that all children, no matter where they live and regardless of their religion or culture have access to palliative care at home."
Carmen Auste wanted patients and families to realise that they are not alone, "Parents, families and even other survivors have an active role to play. The voice isn't just of families, but of the whole community supporting the needs of children with cancer. Part of the advocacy toward community-centred care should be focused on gaining empathy and understanding for the children.”
Talking about the cultural aspect of treatment and care, Anecho called for a categorisation of the communities of care. "To make the most out of the resources available, you need to get the joint cooperation of the community. Every member of the community can contribute and it is important to change the collective mindset."
The second session focussed on palliative care and pain relief. It saw Catherine Kerekezi, Director and Current Medical Director of Kenya Diabetes Management and Information Centre, Zipporah Ali, Executive Director or of Kenya Hospices and Palliative Care Association (KEHPCA) and Joan Marston, Co-chair at PalCHASE Palliative Care in Humanitarian Aid Situations and Emergencies. The workshop underlined how to utilise EMLc as a pathway to access palliative care and ways to cope with palliative care without a doctor. It concluded with an open discussion that identified key messages and advocacy tools for the improved treatment of childhood cancer, laying particular emphasis on palliative care.
Session three revolved around cancer prevention campaigns. Speakers were Tamera Coyne-Beasly, Professor of Pediatrics & Internal Medicine and Division Director at UAB Adolescent Medicine, Jonathan Klein, Professor and Senior Associate Head in the Department of Paediatrics University of Illinois Cancer Centre and Zied Mhrisi, Communications & Advocacy Director at Global Health Strategies. They conveyed information on the implementation of HPV vaccine campaigns for long-term impact and how tobacco control can play a crucial role in cancer prevention.
National & Regional Advocacy was the highlight of the fourth and final session. The session discussed vital ways to build an evidence base for childhood cancer treatment and its outcomes. Led by Ibtihal Fadhil, President of the Regional NCD Alliance, Julia Downing and Maie Olsen, Program Manager at NCD Synergies. They touched upon the importance of EMLcs in terms of palliative care and creating cancer registries for children of all age groups. The discussion ended with a group activity conducted by the WHO Knowledge Action Portal.
Under the patronage of Her Highness Sheikha Jawaher Bint Mohammed Al Qasimi, International Ambassador of the World Cancer Declaration of the Union for International Cancer Control (UICC), International Ambassador for Childhood Cancer for UICC, and Patron of the Global NCD Alliance Forum, the Global Forum on Non-Communicable Diseases for Children is being organised by the Friends of Cancer Patients (FOCP) and is being held on 25th and 26th of March.
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