Palliative care is…. being devoted to the well being of the child

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I am a social worker and a counsellor. I was trained in palliative care in Uganda at Mildmay and later on completed a two week Train the Trainers course that was run by the International Children’s Palliative Care Network (ICPCN). Both my trainings were in Paediatric Palliative Care (PPC), where there is an emphasis on communicating with children and the provision of holistic care. I currently practice children’s palliative care at Maluba House, a unit for children at Our Lady’s Hospice in Lusaka, Zambia.

Maluba House

Maluba House was established in June 2011 when three organisations came together after identifying the need for children’s palliative in Zambia. These three organisations were Tiny Tim and Friends (TTF), the Elizabeth Glaser Paediatric AIDS Foundation (EGPAF) and Our Lady’s Hospice (OLH).

I work for Tiny Tim and Friends, a paediatric HIV clinic. We saw the need for a children’s hospice in Lusaka because of the overwhelming number of children who were dying in needless pain; children dying because they had been orphaned and had no one to take care of them; children dying from malnutrition because they are left with drunkard grandmothers and mothers; children dying of cancer and children dying in terrible pain.

When Maluba House was established it was initially a 6 bed in-patient paediatric palliative care unit. We now take up to 10-12 children when it is a ‘full house’.

The children’s needs are immense 
I work at Maluba House three times in a week; I spend most of my time with the children, just listening to their wants and needs. Although Maluba House is funded, the needs of the children are so immense. All the children that are admitted come from the most vulnerable of families and, in some instances, the families come from distant provinces – as far as 3,000 km away from home. A number of families are sent from the main hospital in Lusaka (UTH) for respite at Maluba House after the child has received treatment for cancer. Because of the distance, some of the families have not been home for over 6 months.

The children’s wants and needs can range from wanting to go home to spend time with the family, to wanting a particular toy or refusing to eat because they would like certain foods on that particular day. Unfortunately, the hospice can only serve the food that is available that day. On very rare occasions, the kitchen staff have managed to prepare specific foods for patients.

Demoralising
The parents also need attending to. They have problems as a result of fatigue, stress, depression and missing being with the rest of their family. Being in a resource limited institution, while they are in the hospital, some of the costs for lab work and investigations for the children are passed on to the parents, thus causing stress on them as they do not  have the funds to take care of the bills. In the worst case scenario, parents have been discharged without money to go back to their village or home town. It is demoralising sometimes when the patient and family are looking to you to come up with a solution to their problems but there is not much that you can do for them. We always try to assist both the family and the child but we are not always successful in meeting all their needs.

To date Maluba House is the only children’s hospice in Zambia.  We have had over 100 admissions and 15 deaths. All the children that died, died peacefully and their caregiver or parents were prepared adequately. The largest hospital in Zambia (UTH) refers children that have stayed in their care for too long for respite from their cancer unit.  We also often see children with severe malnutrition or end stage HIV symptoms.

Ackson’s story

Ackson has muscular dystrophy and was brought to the hospice by a Faith Based Organisation. People from within the organisation come to visit him when someone can spare the time, which is not so often. He was found abandoned at home. The only time we ever met his mother was when we admitted him to the hospice. He is a single orphan (which means that one of his parents have died) and has two older brothers. Follow ups have been made to the community to get his family to visit him at the hospice but all attempts have been futile. We are currently working with the department of social welfare to seek a permanent home for him.

Bennard’s story
Bennard is a double orphan (both his parents have died) and stays with this sister in one of the compounds (squatter settlements) in Lusaka. He was involved in an accident that caused a spinal injury and is a quadriplegic. Bennard has been staying at the hospice since last year. The Beit CURE home care outreach team discovered Bennard at home with bed sores that had penetrated through his skin on different parts of his body such as his heels, his waist, on his back, his elbows and hips. The sores were infected and causing high fevers and pain. Bennard was referred to Maluba House from Beit CURE. His sores took some time to heal but with tenderness and skilful treatment from the nursing staff, he eventually healed.

Bennard was bed bound and unable to go out and enjoy the sun or sit up in bed until the director of EGPAF had a wheelchair designed specifically for him that helps him to sit up and allows him to go outside in the sun and feel the fresh African breeze. We salute Susan Strassor of EGPAF for the beautiful gesture as it adds more quality to Bennard’s life and enables him to do things he thought he would never be able to do again.

Palliative care for children is…
So for me, palliative care for children is when a health worker is devoted to the well being and contentment of a child and the family. The health worker shares the blissful moments of life or breath that brings about hope and peace to the body, mind, spirit and the environment at large. On the other side, when a dark cloud besets the child and the family, the health work will know that death is imminent and will be filled with sorrow. 

We must remember that every little thing we do, counts.  Let us continue to fight the good fight for children’s palliative care. 

If you would like to find out more about Maluba House and how you can support the work of Tiny Tim and Friends, go to: http://www.tinytimandfriends.org/

On Wednesday 27 November all ehospice editions will be running a series of articles in which different people will explain what palliative care means to them. You can read all the articles in this series from the other editions by clicking on the links in the related articles section.

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