āIt couldnāt be farther from the truth that palliative care is only for those nearing the end of their lives,ā says Anina Meiring, Service Manager: Childhood Cancer at the Cancer Association of South Africa (CANSA). With September being Childhood Cancer Month, CANSA is reinforcing how important palliative care is and how it can assist both children with cancer and their families and caregivers.
āItās more about ensuring that children and adolescents, live as well as possible for as long as possible than itās about being the last resort,ā added Meiring about palliative care for children with cancer.
Childhood cancer remains a significant health challenge in South Africa, with approximately 1000 children diagnosed each year. While advancements in medical research have improved survival rates, the journey for young cancer patients is often filled with physical, emotional and psychological challenges.Ā Palliative careĀ aims to ensure the best possible quality of life for the child/adolescent and for members of the family. Ā It can beginĀ at the time of diagnosis or at any point along the progression of any life-threatening illness even when curative treatments are appropriate. Palliative care provides an essential layer of support, focusing on symptom management, pain relief, and holistic care that addresses the emotional and social needs of both the children and their families.
According to Meiring: āPalliative care for children is a compassionate approach that CANSA encourages to begin from the moment of diagnosis. We provide comprehensive support from day one, ensuring that the patientsā physical and emotional needs are met throughout the period, as well the needs of their families and caregivers.ā
CANSA collaborates with Palliative Treatment for Children South Africa (PATCHSA) to increase the reach to more young cancer patients in need. Sue Boucher, Director of PATCHSA, is a leading advocate for childrenās palliative care across South Africa.
Palliative care for young cancer patients is provided by a team of people working collaboratively and may include a multidisciplinary team of, paediatricians, oncologists, doctors, nurses, social workers, spiritual care providers, psychologists, physiotherapists, speech and language therapists, counsellors, teachers and play therapists.
In the end, the team is built according to the specific needs of the young person and available resources. The team works together to create a care plan tailored to the childās needs. Because children and adolescents have the right to participate in decision making regarding their health, the team will involve them and find ways to explain complex topics in a language that they understand.
Meiring explains that by understanding palliative care, parents and guardians can better advocate for their childrenās needs, make informed decisions, and access comprehensive support. This knowledge empowers them to provide the best possible care for their children, improving both the childrenās and the familiesā quality of life during a challenging time.
Through its Tough Living with Cancer (TLC) programme, CANSA not only provides palliative care management, it also offers support in the form of accommodation for parents and guardians of children undergoing cancer treatment, especially those who live far from treatment centres.Ā Further services include one-on-one and group trauma and grief support and counselling; a Facebook support group for parents, guardians and caregivers; Ā access to equipment, such as wheelchairs; food parcels, toiletries, prosthetic support, and arts and crafts activities; educational and awareness programmes regarding early diagnosis and explain treatment outcomes; and free Tele counselling in seven languages for parents, guardians, patients and caregivers.
āWe understand that facing a serious illness is incredibly challenging for both children and their support structures,ā shares Meiring. āOur team offers emotional support through a compassionate presence in some hospitals and in our TLC Lodges, helping children express their feelings, fears and hopes.ā
The wheelchairs the CANSA TLC programme provided to two young cancer patients made all the difference to them, say their mothers. āOur son lost his ability to walk after his operation. We were so happy when the chair arrived. It enabled us to take him everywhere including the beach, parks and shops. It also helped a lot with his hospital visits,ā said one.
The other thanked TLC for the wheelchair and walking ring provided for her son. āIt helped us a lot with hospital and clinic visits and going to church,ā she said. āIf it wasnāt for CANSA TLC, I donāt know how I would have coped. Thank you for always being there and continuing to be there for our little fighters. You make is so much easier for us parents and our children.ā
Find out more about palliative care for children and adolescents at cansa.org.za and at https://patchsa.org/ which both include a list of palliative care services and their contact details.
