“The sky’s awake so I’m awake and I have to play.” So says Princess Anna in the popular Disney animated movie Frozen. Children don’t only have the right to play, they need to play and this need does not go away because a child has a life limiting or life threatening illness. These children need to play more than most in order to find ways to process and understand what they are experiencing.
A special edition of Children – Open Access Pediatrics Journal entitled The Role of Play in Children’s Health and Development has recently published a paper entitled The Role of Play in Children’s Palliative Care. The paper’s authors are Sue Boucher (ICPCN); Prof Julia Downing (ICPCN) and Rise Shemilt (Gaddum Centre).
Universal language of childhood
Play is the universal language of childhood and the time and opportunity to play is every child’s right. The role of play as a vehicle for communication, a tool for distraction and its value in the holistic development of a normal child is without dispute. The role and value of play increase proportionately when a child is made more vulnerable through illness or disability.
Despite this, providing time and opportunities to play can be overlooked or considered to be of little importance or relevance when the focus of the adult carers is the amelioration of clinical symptoms of the illness and on lessening the psychological impact the illness may have on the child.
This paper outlines the role and the value of play as an integral component in the provision of palliative care for children with chronic, life-threatening and life-limiting conditions. The paper describes how providing appropriate equipment, sufficient time and relevant play opportunities not only improves the very sick child’s psychological well being, but also allows the child to cast aside the confines and restrictions imposed upon them by their illness and for a few golden moments to be nothing more than a child at play.
Extract
In an extract from the paper, one author describes the following memorable encounter with a young boy in a children’s hospice.
Sunflower House Children’s Hospice in Bloemfontein, South Africa is seldom without the sound of children playing and their noisy chatter and laughter. While the children cared for at this hospice all have an illness or condition that threatens or will likely shorten their lives, on this warm afternoon in December 2008 most looked remarkably robust and were engaged in exuberant play, both in and out of doors. I came across Lebo lying in a small, quiet room with just one bed. It was a room, I was told, often used by the sickest children—those whose deteriorating health prevented them from coping with the normal day-to-day activities of the hospice. It was also used at times for those nearing the end of life.
Almost 7 years old, Lebo looked closer to 4; his stunted growth the result of congenital heart disease. His energy levels were depleted despite the oxygen being fed to him via a saturator. Any pain he had was well controlled but there was no mistaking the anxiety and sadness in his eyes as they followed me into the room. We did not share a common language but no words were needed for me to know that he would rather be playing with his friends. While he had managed to tear the paper wrapping off a gift he’d been given to reveal a plastic fishing rod with a handful of colourful fish, the stiff packaging had proven too much for Lebo so the toy lay still unopened on the bed. Releasing the toy for him and without words we began to play together.
I pretended to be completely inept at catching the fish which made him smile. I clapped whenever he caught a fish, which delighted him even more. I hid the fish in the folds of the bedclothes and he found them again to raspy giggles. For a while we played together and Lebo smiled and laughed and clapped in delight. When I had to leave I was rewarded with the sweetest smile and a wave. Lebo died not long after my visit, an event not unexpected as he had fought to live almost every day of his short and life and had faced many difficulties, both social, emotional and physical. But for a few golden moments of time on that warm December day Lebo was able to be nothing more, and most certainly nothing less, than a child at play.
The paper describes the immense value of both free unstructured play and the importance of play therapy for children with palliative care needs.
The paper is available to download here.
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