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

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

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

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

Please Don't Leave Me

Film Australia made this film for the Australian Association for the Welfare of Children as an Australian contribution to the International Year of the Child, 1979. The film was the result of a unique cooperation between Government, hospitals and the community.

Please Don’t Leave Me is a social document truthfully reflecting ‘where we were at’ in Australian children’s hospitals in 1979 – the International Year of the Child. The film is without commentary. At the time, Film Australia and AWCH paid tribute to hospitals whose staff courageously agreed to this exposure of their normal routine. Despite their vulnerability they were willing to go ahead, sharing with the film makers the aim of providing insights to all professionals, parents and policy makers concerned with the care of children.

Uncontrived visual and sound effects speak to the observer at an individual level with a strong emotional impact. It is worth noting that one of the camera men in the production team was Dean Semler of cinematographer fame – Mad Max 2, Dances With Wolves, City Slickers and Bruce Almighty to name a few.

Please Don’t Leave Me shows the reality of a child’s hospital experience in 1979. The result is important and at times uncomfortable. It was an important tool for the achievement of AWCH’s national goal – that each hospitalised child’s overwhelming plea ‘I Want Mummy’ should be understood and answered. It was hoped that through insights gained the necessary provisions would be made both in policy and practice so that hospitalised children could be continually supported by their parents. In the cases where this was not possible, it was necessary to ensure a surrogate parent for each individual child.

In AWCH’s 40th year we celebrate its achievements in the introduction of:

• increased and flexible visiting hours for parents/carers and siblings of hospitalised children and adolescents
• parents staying with their child during hospitalisation with appropriate facilities
• recognition of the importance of play/education for a child/young person's preparation and recovery while in hospital
• increased parental involvement in all aspects of a child's hospital care
• Introduction of the AWCH Ward Grandparent Scheme

It is worthwhile watching the outstanding film and reflecting on the last 30+ years advances in how children are cared for in hospital.

The DVD can be borrowed from AWCH Library

Thanks A Million

As AWCH celebrates its 40^th anniversary during 2013, it is timely to reflect on all the AWCH volunteers past and present who have contributed to the improvements made in the care of children in Australian hospitals over the last 40 years.

 

From the very first meeting in 1973 when a bunch of concerned men and women got together to form an association, AWCH volunteers have worked hard to make things so much better for children and their families.

 In the words of Doris Hart, first Secretary and National Organiser of AWCH - the moving force behind the Association's initiatives from 1973 to 1983 – there was a dark underside to children’s hospitalisation….

 
‘In the newspapers and magazines of the 1960s/70s, information about children in hospital centred around hospital success stories; visits of royalty and film stars; Easter bunnies delivering a surfeit of Easter eggs; and Father Christmas and his helpers with an abundance of toys and good cheer. The stories conveyed images of hospitals working near miracles; of everyone caring about children in hospital and of the kindness shown by hospitals for their child patients.
 

All of this was true but it hid a very dark underside to the hospitalisation of children - long term, often devastating, emotional trauma.

 

In Australia, the need for change was heralded by the concern expressed in 1970 by the Aust. & N.Z. College of Psychiatrists. Their Position Statement entitled “The admission of mothers to hospital with their young children" accused hospitals of……doing more damage in one year than all the psychiatrists together could undo in several years. . .

That hospitalisation could have such devastating effects on young children was well known to me. In the late 1960's I worked for three years in the children's unit of a psychiatric hospital handling the most severely emotionally disturbed children in the State. Hospitalisation at an early age appeared regularly in the case histories of these children.

One would have expected the psychiatrists' position statement to bring forth cries for an immediate enquiry and remedial action. Instead, it was virtually ignored. The hospitals' case was that parents upset children who were soon settled and better off without them. A fallacy already forcefully disproved by the published works, both written and audiovisual, of James and Joyce Robertson http://www.awch.org.au/2-year-old-goes-to-hospital.php

The "cage” cot with a wire frame 1976

If the mother (or the child's caring person) was not admitted, how did hospitals cope? Nurses did their best in an often impossible situation. For the most part, children simply cried until they became withdrawn and “settled". Distressed toddlers were particularly difficult to manage. In their anguish they often tried to climb out of the cot. Fearing that they would harm themselves they were sometimes put in restrainers. Documented cases of children choking to death in them discouraged the practice. Another method was to put a wire frame over the top of the cot thus making it into a cage.

 In the 1970's, I saw one of these in a regional hospital in NSW, another one in Victoria. In each case, the hospitals saw the cage as a perfectly valid solution that ensured the child's safety, even though there were empty beds at the side of the cot which could have been used by a parent. Indeed, in Victoria I was told the cage was used because the child was the only one in the ward so, instead of having a nurse there just for one patient, the sister in the adult ward kept popping in. When I asked why they hadn't admitted the child's mother in these circumstances, I was told it wasn't hospital policy. The nurse admitted she would willingly have let the mother stay (had it been allowed) as the toddler was a nuisance disturbing and upsetting her patients all night.

Of course, most hospitals did not use restrainers or cages, but there were still very distressing sights associated with necessary treatments. I remember seeing a very young child in a side ward with his eyes swathed in bandages and his wrists tied to the sides of the cot so that he did not pull off the bandages. He was kept heavily sedated but one couldn't help wondering what fears or dreams he was having in that twilight state. I felt sure his mother holding his hand and comforting him would have helped.

 

Cracking the system

In the literature, the problems of hospitalisation of children had been identified and the solutions outlined. As hospitals failed to implement more humane policies, there were various attempts by individuals and groups to force action but none had been successful. Hospital boards were thought to be omnipotent. To challenge them from inside the hospital was to invite personal disaster career-wise; to challenge from the outside was to invite ridicule as a trouble-maker.

At the first meeting of the group which subsequently became AWCH I voiced my strongly held convictions:

• that infants and young children needed their mothers in hospital and that need had to be met
• that parents and professionals must work together publicly if the above aim was to be achieved

I believed that we could do better by drawing upon Australia's egalitarian ethos and creating a platform from which all could speak on behalf of the children, free of professional, personal or vested interests.

Thus AWCH was born in the belief that parents and professionals together could crack the system' for the good of the children.’

During this national volunteers week 2013 AWCH would like to thank all our volunteers both past and present

 

 
If you were an AWCH volunteer between 1973-2013 or know of someone who was please contact AWCH and let us know how you helped awch through your volunteering.

Volunteer Week 2013 - thanks a million

The Association for the Wellbeing of Children in Healthcare (AWCH) would like to thank our Hospital Ward Grandparents, Board Members and Office volunteers for their time, thoughts and energy in doing a myriad of tasks, which are always done with grace, fun and laughter.

Thanks a million! The support you provide through your involvement with AWCH enables families to continue to nurture their children through the stresses and strains of a hospital experience.