Island Hospice and Healthcare joined the rest of the world in the Hats on for Children’s Palliative Care campaign, hash-tagged #Hatson4CPC. The second Friday in October, which this year fell on Friday 11th October 2019, is a day for raising funds and international awareness of the work of children’s hospices and children’s palliative care (CPC) services worldwide.
Worldwide more than 21 million children are in need of palliative care. In Zimbabwe, the need for palliative care is even more desperate with the struggling health system and paucity of paediatric (children) palliative care health professionals.
Research published in the Journal of Pain and Symptom management (Vol.3 # 2 Feb 17) estimates the need for children’s palliative care in Zimbabwe to be the highest in the world at 120 per 10 000.
In a three country study done in Zimbabwe, South Africa and Kenya on the need for palliative care for children, the number of children reached with palliative care services in 2012 was:
- 5,438 in Zimbabwe (approximately 5% of the specialised need)
- 14,501 in South Africa (approximately 5% of specialized need) and
- 545 in Kenya (less than 1% of specialised need).
Baby Panashe was diagnosed with teratoma. Island Hospice and Healthcare played a crucial role in managing her pain. Today she wears a smile and her granny is smiling too.
This shows that the gap between the need for palliative care for children and the available provision of specialised children’s palliative care in these countries is very large.
Palliative care provision is very challenging in children both at the personal and broader level. There is a lot of misconception about palliative care where many people think once you are referred to palliative care services, it means you are dying.
When working with the children you are dealing with two groups of people the child and the parents/guardians. The parents have to understand and be convinced of the need for palliative care for them to consent or to take their child to be seen by a palliative care practitioner.
At a broader level a number of challenges present themselves. To name but a few, these include shortages of essential palliative care medicines, paucity of palliative care professionals in the country, general myths and fears about palliative care. Some of the medications used in palliative care, for example morphine for pain control, are not available in public health institutions.
In resource-poor settings, there is a dearth of experience and culturally acceptable models of institutional and community-based care for children who need palliative care. Additionally, other disease diagnoses like HIV/AIDS, cancers and children born with congenital birth defects creates many challenges beyond the physical illness. This is because of the associated guilt, the possibility that other family members are infected, sick or dying and the stigma that exists in many communities.
It is our hope that with the current ongoing integration of palliative care into the public health system being driven by the Ministry of Health and Child Care (MOHCC) in Zimbabwe, access to palliative care will greatly improve for the children.
It is important to note that palliative care is not about only end of life dying but rather it is about improving the quality of life of children and their families who are facing life threatening and life limiting illnesses. Palliative care gives holistic care to the child and helps the parents/guardians to cope emotionally, socially and spiritually.
To stay up to date on palliative care developments on this topic, visit the International Children’s edition of ehospice.
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