Friday, 28 February 2014

The Australian Experience of Living with a Rare Disease: personal stories.



Rare Voices Australia, 2014.

Rare Voices Australia has recently published, “The Australian Experience of Living with a Rare Disease: personal stories”.  This is a personal look at the daily lives of individuals and families who are generous enough to share their experiences.  It also captures the growing awareness of why we need to join together for better care.  A co-ordinated approach for access to services within Australia for people living with a rare disease is a key message.

The Stories
The individual stories in this book are simply written and provide real insight. Listening to the stories and recognising patient expertise, is described as the key to working in collaboration and reaching better health outcomes.  The patient stories help build greater understanding. Chapters begin with a brief description followed by stories.  Each story has a colourful portrait photo.  For example, in the Diagnosis chapter, Kerry tells, “it took 49 years to diagnose my rare disease”.  In Jessica’s story her mother Sharon describes how “our journey to diagnosis wasn’t easy.  We waited several months to receive genetic test results from the USA”.

The reader will benefit from the easy-to-read stories, health professionals can be challenged by patient experiences; government bodies can see the value of a co-ordinated approach to the daily lives of Australian families living with rare disease.  “The Australian Experience of Living with a Rare Disease: personal stories” is a wonderful resource. Many of the individuals and families in the book have also taken up the role of advocate, working with others through support networks. Find links to support resources throughout the book.

Visit the Rare Voices Australia website to view “The Australian Experience of Living with a Rare Disease: personal stories”. The book is downloadable in PDF ( http://www.rarevoices.org.au/ ).   

A hardcopy is also available for loan from the AWCH library.

Jillian Rattray
AWCH Librarian
February, 2014

Tuesday, 17 December 2013

No Matter What



No Matter What
Houghton Mifflin Harcourt, Boston, Massachusetts, ISBN 9780152063436
By Debi Gliori

This board book will delight you and your preschooler. With beautiful, cosy illustrations and enchanting rhyme and rhythm, “Small” asks whether “Large” will love him “no matter what”? Through repeated questions, Small explores more about love. Humorous illustrations in vivid colour compliment the story “But if I turned into a squishy bug, would you still love me and give me a hug?” “Of course,” said Large, “Bug or not, I’d always love you, no matter what”.

There is warmth and comfort as Small challenges Large to find out whether love can be broken and mended or whether it will disappear when far way. The story is simple and intimate, Small’s questions are answered and Large gives reassurance and hugs.  Young children who are facing separation from their parent or carer may read this book and be encouraged through difficult circumstances. The book will be a great bedtime read for families who want to bring a warm glow to their children.

This book may be borrowed from the AWCH library, Call number 155.937 GLI 1

Reviewed by Jillian Rattray
AWCH Librarian
December 2013

Thursday, 7 November 2013

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

Monday, 29 July 2013

Help! My Child's in Hospital!

Help! My Child’s in Hospital: A parent’s survival guide. Practical advice for parents on preparing your child and caring for them in hospital.
By Becky Wauchope ~ Illustrations by Kaitlyn Miller

“Help! My Child’s in Hospital” is a great read if you are looking for something positive to prepare your child and family for hospital. Written in a warm, personal and easy-to-read style, Becky Wauchope describes what it is like to be in hospital and how to cope with anything from an emergency visit to a long stay and repeated visits. Her experiences with son Gus in over three years of repeated visits to hospital, have resulted in a practical and creative book. Lots of tips throughout provide starting points for children and parents to encourage coping and reduce fear. There are ideas to help keep life as normal as possible with play and some fun. The easy to follow ideas are particularly good for families with young children, Becky has many years experience as an early childhood worker. There are great tips and creative ideas to assist children and families with hospital preparation, daily life in hospital, tests and procedures, anaesthesia and surgery, medication, support and recovery.

This is a stressful time, so parents who are time poor can dip into the book and read on a topic, such as “Having an operation” and read about how to prepare and cope with fasting. Reading the book cover to cover is also a great way to gain an overview.

The book emphasises communication for parents, who know their child best, to work with health professionals for the best care. Honest conversation with your child providing the right amount of information is also a positive step. Parents can read about how to be child advocates, there are examples of steps for being prepared when talking with health professionals. Parents are encouraged to know their limits and if not able to help reduce a child’s fear or confusion then they are empowered to ask for help. Parents are a reassuring presence.

Some variations of what you may expect to find in different hospitals are covered. Parents will feel more aware and strengthened by both the information and supportive ideas. "Help! My Child’s in Hospital" highlights why preparing yourself and your child for the hospital experience is so important.

Find checklists at the back, with what to pack including Surprise packs that offer distraction. With cute illustrations, helpful layout and available for a reasonable price, this book would be a great addition to a Kindy library, hospital waiting room or public library. Copies are available for loan from the Association for the Wellbeing of Children in Healthcare (AWCH) Library and can be purchased via Becky’s website.

About the author:
The Wauchope family were about to emigrate to Australia from the UK, when Gus, the youngest of four developed severe breathing problems. This was the beginning of a three year journey through hospital readmissions in the UK and then Australia. Gus is now well and Becky has made numerous speaking engagements, run support groups and encourages people to share their stories. Find her website at: www.helpmychildisinhospital.com

Keywords:  Anaesthesia; Child; Child, Preschool; Communication; Hospital preparation; Hospitalization; Medication; Parent information; Preparation for anaesthesia; Preparation for medical and surgical procedures; Routines; School children


Jillian Rattray
AWCH Librarian
July, 2013

Wednesday, 19 June 2013

Joyce Robertson Tributes

The news of the death of Joyce Robertson on 12 April 2013 has saddened her many friends and followers in Australia. The pioneering work of Joyce Robertson and her husband James has had a profound effect on how children and young people are cared for in hospitals in Australia.


In the 1950s there is no doubt that Joyce together with James, her partner in life and work, transformed the concept of paediatric hospital care in Britain by studying the parameters that influenced children’s reactions to hospital and institutional situations. Two decades later, their impact on Australia was no less important. The Robertson’s books and films were crucial to the then newly established Australian Association for the Welfare of Children in Hospital (www.awch.org.au) in its fight to bring about a revolution in hospital care for children by insisting that the mothering needs of babies and young children be met.

In 1977 Joyce and James Robertson came to Sydney to lead a conference on The emotional needs of infants and young children. Many have spoken of the clarity with which both Joyce and James presented their views and the courage with which they faced opposition to them. They did not deviate from their firmly held beliefs that early and continuous bonding with the caregiver was a prerequisite to the stability and wholeness of the child. The successful establishment of the AWCH Ward Grandparent Scheme in 1987 was influenced by the Robertson's insistence on the need of substitute mothering for the unvisited children in hospital.

Joyce Robertson will be remembered as one of a small band of people who have devoted their lives to the betterment of the lot of children and thereby earned the thanks of us all. On behalf of all those who care about the emotional wellbeing of young children, thank you Joyce Robertson for your insight and sensitivity, for your warmth, commitment and courage.

Anne Cutler, 
Program Manager
on behalf of the Australian Association for the Wellbeing of Children in Healthcare



Joyce has died and, although it is twenty five years since the death of James, it is impossible to think of them except together - James and Joyce. Whenever either was asked for an opinion the answer was always in the plural – ‘We believe’ – ‘We have found’. They were true partners in life and in work.

The first Australian Association for the Welfare of Children (AWCH) in Hospital National Conference ‘The Emotional Needs of Infants and Young Children - Implications for Policy and Practice’ (to become known always as the Robertson Conference) was an act of faith that proved forever justified. For the Robertsons, at that time, Australia was the other side of the world. They usually worked with small professional groups . AWCH was a very young, voluntary organisation which brought parents and professionals together. This impressed them as did our ‘Suggested Health Care Policy Relating to Children and their Families’.

For AWCH the conference was a baptism of fire. In these days of expensive, professional conference organisers it is hard to believe that at the AWCH National Office we did it while carrying out our normal, heavy workload supported by the monumental voluntary efforts of our members. It cannot have been as slick as a present day professional effort but summing up their feelings on the conference James told the delegates ‘You couldn't be more pleased about it than we are’. The delegates erupted into sustained applause and there was spontaneous singing of ‘For they are jolly good fellows' and three resounding good cheers. Joyce called out ‘You had better stop or we won't go home!’ That was our abiding memory of James and Joyce - together, tired but radiant amongst kindred spirits.

The death of Joyce brings to an end a very important era in the search for understanding of infants and young children. The huge legacy of the Robertsons lives on; nowhere more so than in the work of AWCH.

Thank you, Joyce. Thank you, James

Doris Hart, 
AWCH founding member


Footnote:

Graham Martin, then a young doctor at the Adelaide Children's Hospital, now Professor of Child and Adolescent Psychiatry at the University of Queensland, Undertook the unenviable and daunting task of editing the mass of material from this conference. To his great credit he produced a 300 page document 'The Emotional Needs of lnfants and Young Children. lmplications for Policy and Practice" - an exceptional book -
few, if any, better for those wishing to understand the Robertson teachings with the added insights into the Australian scene in the seventies. You can borrow the book from AWCH Library