The care-work that books can do

Keith D’Souza

The Bai Jerbai Wadia Hospital for Children (BJWHC) in Mumbai, established in 1929, is a charitable public hospital exclusively for children till age 18. Time and experience have enabled an institutional culture of sensitivity to the specific-needs of children which is vastly different from adult healthcare needs. In the quest for quality healthcare respecting the ‘best interest principle’ for children, a pediatric Palliative and Supportive Care Unit (PSCU) was setup in March 2019 with support from the Cipla Foundation.

The hospital palliative care domain has grown rapidly in response to patient needs and clinician interest in effective approaches to managing chronic life-limiting illnesses. Palliative care focuses on the relief from suffering and support towards the best possible quality of life for patients facing life-limiting illness and their families. Palliative care through the prism of physical, psychological, social and spiritual dimensions aims to address the practical burden of illness not just for the child but also for the caregivers, parents and healthcare service providers.

Within the ambit of the psychological and social dimension of palliative care at BJWHC, a Book-n-Toy library (BTL) was started in April 2021 through a grant from the estate of MehlliGobhai. MehlliGobhai was one of India’s finest abstractionist painters and blessed with an open hand and a giving heart. Some portion of his estate was set aside to give to children’s charities.

Whilst there are many kinds of libraries and in different forms, be it physical or virtual, what is peculiar to this library is that it is meant for children in the hospital. The Library is situated in two rooms which are being creatively used by the Pediatric Palliative and Supportive Care Unit for out-patient consultation and as a play room for children while their parents are counselled by doctors, nurses and counsellors and supported in the decisions they make in the best interest of the child.

Children from various parts of the state – rural and urban – as well as across states are in-patients at the hospital. For some it is the first time to the metropolis and to a hospital while for others, the hospital is the last resort after having exhausted all their options and not seeing any improvement in their child’s condition. Mothers are the primary caregivers to the sick child whilst fathers may visit at designated hours and assist with procedural work. A mobile smartphone is a distraction for children but only available when the earning member of the family visits. The ceiling, electrical fixtures, walls and window frames are steady companions to the child along with a harrowed mother who bears the brunt of the child’s irritability brought on by medical procedures or dietary restrictions and tantrums to go home. It is in such an environment that Toys and Books through play and reading stimulate the mind and momentarily divert the child’s attention from pain and discomfort. Children are able to smile and have an opportunity to look forward to some time away from all that is clouding their minds.

BTL is a service to all BJWH children, both in-patients and out-patients. Children admitted in the hospital may borrow books overnight or longer if the book is too voluminous; children who visit the hospital periodically on outpatient basis may play or read in the PSCU, or be given for home-lending. The BTL librarian does bed-side reading to children who are critically ill but can see and listen based on their willingness at the time of the library round; drawing and colouring are other activities offered to children.

The BTL includes a collection of books in Hindi, Marathi, Urdu and English (storybooks, Self-help, motivational books, graphic novels, comics, biographies, Look and Tell picture-books, toys for younger children adapted to age, based on safety and hygiene hospital protocols. The collection also includes hand puppets and percussion instruments that hold the attention and interest of the child. Some books and toys are adapted for children with visual, hearing or intellectual impairments.

Library rounds are made in the hospital wards and designated areas. Children are referred to the librarian by PCSU team members, nursing staff, counsellors, doctors, parents and children themselves in the wards. Children are offered a choice of the language and type of book they wish to read. The librarian also asks what activity the child would like to participate in, such as games, play, colouring and sometimes even school studies. Bedside sessions with children depend on their current health condition, in addition to reading a story, they may include playing a game of cards, doing mental maths, practicing cursive writing or even simple craft activity.

Parents of other children in the ward lookout and may even take a turn about the bedside of a child who is in a library session and lead the librarian to their children. Children from other beds call and wave out when they require a book. On weekends when the library is closed a book may have visited three children in the ward by the children themselves and the librarian comes to know later through interactions that other children have read the same book. Often parents who are out-of-towners have requested the library for reading materials and they are issued magazines and periodicals in Hindi or Marathi which are not too literary and have simple content relating to everyday life that takes their mind off the rigor of caregiving and nurturing.

The joy of seeing children smile, despite grim health conditions, their relief and gratitude when leaving the hospital and the contact at health follow-up visits makes the BTL an ally in palliative care and is now an integral part of the hospital services. Wouldn’t it be wonderful if all hospitals took a leaf out of BJWHC’s book and set up BTLs in their premises as well?

The author is a lifelong student of sociology with experience in the realm of school education and child rights, currently working as a Book-n-Toy Librarian at the Bai Jerbai Wadia Hospital for Children in Mumbai. He can be reached at [email protected].

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