Extreme parenting: parenting your child with a chronic illness

By Sharon Dempsey
London, Jessica Kingsley Publishers, 2008. ISBN 9781843106197.

Written in a thoughtful and calm manner, Extreme parenting is a book that will support parents and families of children living with chronic illness. The book aims to identify areas of common concern to families and to develop an approach that will encourage children to develop and lead a full life. Parents who read Extreme parenting will gain insight into the author Sharon Dempsey’s experience of parenting her young son Owen through hospitalisations, returning to school, family life, medical necessities and home care. Quotes from other parents who have children with chronic illnesses also add depth and a personal dimension. Although written in a British context, the experiences are also relevant to Australian families. Communication strategies and advocacy are common themes throughout the book.

Extended families and close friends will find this book helpful in developing an understanding of what supportive care means. People genuinely wanting to help can gain insight into areas where they may be able to assist, depending on the needs of the family. It was thought provoking to read about how helping the siblings and parents in daily life will also benefit the child who has a chronic illness.

The section on schooling is important. It draws attention to the role school plays in academic learning as well as social interaction and friendships. Children need understanding and to feel like they are included. A child who is chronically ill and has repeated hospitalisations may experience fear and anxiety on return to school. Teachers and students who are prepared and understand about the child’s illness are in a better position to make returning to school a more positive experience for everyone. Dempsey gives examples as to why teachers may be reluctant to have a child with a chronic illness in their class. She also draws on her family’s experience to provide examples of how Owen’s teachers and friends enabled Owen to feel part of his school life even when away from school. Parents can advocate for their child and foster understanding within the school by providing information and updates.

Medical professionals who read Extreme parenting will be able to think about the child within the context of their family as well as the role parents play in doing the best for their child within the healthcare environment and at home. The aim is to help parents do the best job they can so that the child is given the best possible care. Some of the psychological issues facing families and the role of the child in participation in treatment decisions is considered. Adolescents, in particular, will benefit from taking part in decisions about treatment and care plans. Special considerations regarding privacy, peers etc. are also relevant to adolescent development and hospital care.

For families who have a child with a terminal illness, there is a section on hospice or palliative care. This chapter is written in a compassionate and supportive manner.

Find at the end of each chapter Action points that will review the main themes and direct readers into action. These pointers are helpful reminders and make organising easier. Contact organisations, reference and bibliography lists at the back, not only show the book is well researched but guide readers to other interesting resources.

Extreme parenting is a book written to benefit families with a child with a chronic illness. As growing numbers of families find themselves meeting challenges addressed in this book, our communities will gain much needed awareness by reading this book and others like it.

Reviewed by Jillian Rattray
AWCH Librarian
November, 2013

National Volunteer Week 2012

During this 2012 National Volunteer Week AWCH Thanks Our Fabulous Hospital Ward Grandparent Program Volunteers.

The AWCH Hospital Ward Grandparent Program began in 1987 at the Sydney Children’s Hospital Network – Westmead.

The idea is based on the belief that the trauma of hospitalisation in a child may be lessened considerably by the presence of an adult with whom the child has a loving relationship. Because the parent sometimes cannot accompany a hospitalised child for varying reasons, such as distance, family and job obligations or parental illness, AWCH introduced the visiting ward grandparent scheme.

The grandparent volunteer fills a diverse role:

  • Supports the child and often the family in a time of crisis
  • Provides a means of communication between the child and the unfamiliar world of the hospital
  • Entertains an often bored and frustrated child
  • Provides stimulation at essential stages of development in a child who might otherwise become developmentally delayed due to institutionalisation
  • Relieves the workload of a frequently over extended ward staff
  • Gives the child individual attention and love that every child needs, especially when lying alone in a hospital bed

All in all our visiting ward grandparents do these and a lot more. Their ability to give themselves and be of immeasurable value to the sick child has surpassed our wildest expectations.

During this 2012 National Volunteer Week with the theme ‘Every One Counts’ AWCH pays tribute to the hundreds of ward grandparent volunteers who over the years have supported children and their families in hospitals across Australia.

Interested in volunteering?

Check out more information on the AWCH Ward Grandparent Program