On Children by Kahlil Gibran
And a woman who held her babe against her bosom said, Speak to us of children;
And He said:
Your children are not your children
They are the sons and daughters of Life’s longing for itself.
They come through you but not from you,
And though they are with you yet they belong not to you.
You may give them your love but not your thoughts,
For they have their own thoughts.
You may house their bodies but not their souls,
For their souls dwell in the house of tomorrow, which you cannot visit, not even in your dreams.
You may strive to be like them, but seek not to make them like you.
For life goes not backward nor tarries with yesterday.
You are the bows from which your children as living arrows are sent forth.
The archer sees the mark upon the path of the infinite, and He bends you with
His might that His arrows may go swift and far.
Let your bending in the archers hand be for gladness;
For even as He loves the arrow that flies, so He loves also the bow that is stable.
The Poem of Kahlil Gibran describes quite well, how we have to understand children in their daily life. This will not only be the case if they are doing fine but also or even much more if they are ill and facing the possibility of dying of cancer or another disease. Then we as adults need to let them go if cure is not possible like the arrow that is sent and we as adults need to be strong and stable as the bow. Fear of death is always the fear to die alone and to let beloved ones alone. We the adults need to show the children that we are with them when the arrow starts to fly and that we will stay strong when the arrow flies away. This metaphor of the arrow and the bow tells us to modify supportive, palliative care in children accordingly. Caring for children in a palliative situation starts with understanding them and their needs, registering and palliating their symptoms, being strong and stable, being calm and confident like the bowman who is preparing a perfect shot.
In case of a life-threatening disease not only the child but the whole family is suffering meaning that one needs to care for the arrow and the bow. The caregivers also need support to fulfil their task like a stable bow. To know about the specific needs of the ill child and the caregivers, mainly the family members, we need to ask. Patient reported outcomes (PROs) questionnaires are very helpful in this context. But we always need to consider who shall give us answers. A 6-year-old child will report differently than a 16-year-old, or a family member. Answers are not always words or sentences, often specific behaviour or activities, like playing or painting. We always need to listen and learn to understand what they want to tell us or are asking us. We have also to listen to the parents as they understand intuitively non-verbal communication of their child. They play an important role as care providers.
Anja, a 13-year-old girl diagnosed with bone sarcoma painted this picture of herself at a time when she did know that her leg needs to be amputated: She painted herself more as a ghost than as a human being. Around here ankle of the left leg she put an iron ball with a chain. On one hand she is asking, ‘Will I get healthy again?’, and on the other hand she tells us, the only reason I am still staying on earth is the iron ball. If I lose my leg, nothing will keep me on earth, I will fly away. Take a closer look: half of the left leg is already cut. She looks as a prisoner not able to have the same freedom as girls of her age. The disease is hindering herself to live a normal life. And she does not want her leg to be amputated. The picture is showing the health threat of cancer more than words can say and expresses her fear in all dimensions.
Today information technology in healthcare is getting more and more popular. New and innovative ways are playing a regular part of healthcare provision. The MyPal Child study, part of the Horizon 2020 project “MyPal: Fostering Palliative Care of Adults and Children with Cancer through Advanced Patient Reported Outcome Systems” is looking at novel ways of utilising electronic Patient Reported Outcome (ePRO) systems to better understand the needs of patients and caregivers and to improve palliative care in paediatric cancer patients. The study involves clinical partners from Saarland University and the Hannover Medical School in Germany, together with the University Hospital Brno in the Czech Republic. Throughout the study MyPal will use age adapted ePROs to assess the feasibility of integrating ePROs in palliative care regimes and to measure the satisfaction with the ePRO system. The study will answer the question if ePROs in paediatric cancer patients are beneficial to improve palliative care.
Central to the study is the development of a serious game with the purpose to actively interact with their situation caused by the disease. The game will encourage children using ePROs by playing it regularly. They will be asked to complete questions based on validated PROs at different points during the game. Questions address the holistic nature of palliative care including the physical, psychological, social and spiritual contexts. The game will be personalised as questions will be asked according to individual needs and previous answers, thus ensuring that children are asked the most crucial questions in order to prevent question fatigue.
Whilst the game is still being developed and the ePRO system incorporated within it, the MyPal team is excited about the potential within palliative care. Professor Norbert Graf involved in the MyPal Child Study hopes that “the MyPal clinical study for children will be a success story and thus improve palliative care for children by heading it to new dimensions. We do know that children love to play computer games. And they create machines like Simon to drive and destroy cancer cells and pain, nausea and other symptoms. They want to be actively enrolled in the treatment of their disease.”