Perhaps the most important part of the job as a child life specialist is using knowledge of child and family development to attempt to see the world of the hospital through their eyes:
What is likely to seem unfamiliar or threatening?
Is medical terminology too advanced, foreign, scary?
Who are all these different people and what role do they play in healthcare?
Observation of patients/families/multidisciplinary team members is incredibly important and provides a history of interactions that can serve as a guide for better interventions in the future. That is why volunteer experience, practicum, and internship are such integral parts of child life training. In addition to observation and hands-on experience, books can provide historical and theoretical background that is indispensible. There are some amazing books out there that do a wonderful job of presenting the hospital/illness experience from the child’s perspective. The following books are a few of my favorites and proved an excellent foundation and complement to clinical experience:
The Private Worlds of Dying Children (1978) by Myra Bluebond Langner
Bluebond-Langner is the founding director of the Center for Children and Childhood Studies at Rutgers University. This ground breaking anthropological work examined the world of children with terminal cancer. While hospital policies and pediatric cancer treatment is vastly different today, the stories of children and families in this book are incredibly moving. Bluebond-Langer demonstrates that children understand far more than many adults believe. She presents the stories of many children but I rememeber the case of Jeffrey, a school age boy, most clearly. While parents and staff go to great lengths to hide the seriousness of his diagnosis, Jeffrey knows that he is probably dying. He acts out and explains to Myra that he hopes his bad behavior will make his mother miss him less when he is gone. This book shows us how far we have come in making the hospital a better place for children, but reminds us of why we must continue to advocate for their participation in treatment.
Biting Off the Bracelet: A Study of Children in Hospitals by Ann Hill Beuf
This sociological study was first published in the early 1980s. The author conducted fieldwork in a large pediatric teaching hospital. While she gives plenty of short patient stories and anecdotes of patient/family experiences, the focus of this book is understanding the hospital as a social institution. Beuf explores how the hospital creates a social space with unique customs and rules and how children learn to inhabit the role of “patient”. She spends time discussing different coping strategies for children, coping strategies of staff, and recommendations for how to improve the environment for both patients and healthcare workers.
In Sickness and In Play(2003) by Cindy Dell Clark
Clark interviewed over 40 families of children with asthma and diabetes. She explores how these families make sense of life with chronic illness and establish “normalcy”. She conducted lengthy interviews with children in their homes utilizing play, allowing the kids to lead the discussion and provide insight about their experiences with disease and treatment. One of the strengths of this work is hearing the perspectives of different members within the same family, and how different individuals within the family cope with and think about illness. The writing is accessible and relevant to anyone who works with children.
I’d love to hear about other books that have influenced your work with children and families. Please feel free to share in the comments!