World Hospice and Palliative Care Day:
IAPC’s Special Feature on
Paediatric Palliative Care-10
About the author: Ms. Lavanya Krishnakumar is a Trustee at Golden Butterflies Children’s Palliative Care Foundation and also an & Arts-Based Therapy Practitioner
Sahil (name changed) looked at me with a twinkle in his healthy eye; the bandage on his other eye seemed larger than his thin, small face. His mother, delighted at finding someone who could speak her language, was telling me all. But I, was distracted. An inquisitive hand was reaching out to play with my car keys on a carabiner hanging from my purse, trying to engage them in some conversation with my spectacle case that hung from a neighbouring one. I fished out some ‘safe’ odds and ends from my purse and soon we had a serious play session!!!
That memory of the Onco ward – bereft of toys and any form of recreation for children and their caregivers – reminded me that ‘Every child has the right to play and enjoy their youth’.
Play is an inalienable right accorded to children in Article 31 of the UN Convention on the Rights of the Child.
More so child-patients, whose regular routines and lives have been rudely interrupted by disease in an unimaginable manner. To add to the misery, many are forced to travel from their remote villages to alien cities for treatment, with one parent often having to live in the space between two beds during the course of the treatment. While Doctors and hospitals have the treatment part covered, psychosocial support requires an extra pair of hands on the deck; that’s us, the NGOs, volunteers and social workers.
The term ‘Art Therapy’ was first coined in 1942 by the British artist Adrian Hill, who discovered the health benefits that painting and drawing had on patients who were recovering from tuberculosis. Art therapy helps and guides people, to explore and express their emotions, improve self-esteem, manage addictions, relieve stress, improve symptoms of anxiety and depression, and cope with a physical illness or disability. This expression can manifest itself through any creative form such as drawing, painting, sculpting, colouring, sewing, collaging, music, drumming, etc.
Golden Butterflies Bandwagon, our Art & Recreation Therapy program, was first introduced in 2 hospitals in Chennai. We began by organizing and conducting training sessions for our WINGS (volunteers). We then introduced the detailed session planning and documentation protocols, along with distributing roles, tasks, and standardised deliverables for each session. We formulated a signature ‘GB way’, which encompassed a series of processes: right from our entry with the GB song, to a ‘taking leave’ ritual, in which children would receive reward stickers on their hand and ring a bell to indicate their enjoyment.
We had to engage and cater to a floating population of kids from all ages. We therefore took an assortment of materials ranging from building blocks and soft toys for the little ones to board games for those who did not like crafting. We encouraged children to take home with them, a melange of art materials to try out projects by themselves. Several guest facilitators volunteered their skills and brought vibrancy and variety to our program in the form of art, craft, storytelling, magic, medi-clowning, singing, etc. The sessions also provided caregivers their much-needed respite for a few hours while also ensuring that kids weren’t bored or anxious as they waited in hospital corridors for their appointments.
We also collected gently used and new toys and filled a brightly decorated toy trunk and placed it in a corner of the hospital ward. The Nurses would let us know when the trunk needed re-fills as we do not insist on children to return the toys when they leave.
Due to the COVID-19 imposed restrictions, we reformatted our GB Bandwagon to ‘Magic Envelope’: an A4 envelope that holds craft activities with all the necessary materials and child-friendly instructions, colouring sheets, games, and a toy. This Magic Envelope is lovingly curated and assembled by our WINGS and mailed to our child-patients every month. We try to include activities that can be enjoyed by siblings and parents too, to foster bonding.
It is Golden Butterflies’ vision to take GB Bandwagon to every child-patient irrespective of whether they are at home, hospice, procedure room, out-patient area or the hospital bedside.
Golden Butterflies Children’s Palliative Care Foundation is a not-for-profit, public charitable trust registered in February 2018 in Chennai, dedicated to serving the needs of underprivileged children suffering from chronic, advanced or incurable diseases, and their families. www.goldenbutterflies.in