C is for Children’s and youth participation – resource

Photo: Charter of the Rights of the Child in Hospital
Second Department of Paediatrics, University of Athens

It was only this week that I took part in my second focus group, this one was held at my children’s school. All those who took part seemed interested and had to peel themselves away to go and meet their children. You may be surprised at my baby steps. There are so many instances where people seek our opinion today via telephone surveys, market research or when visiting a website. We are all consumers and in the surge to capture people’s attitudes it is worth stopping to ask what of those areas where people are under-represented, excluded or brushed aside? A lot surely comes back to who is involved and what kind of collaborative process they are working towards. With a flood of information the buzz seems to be around what to do with it, meaningful evaluation and feedback.


Photo: Charter of the Rights of the Child in Hospital
Second Department of Paediatrics, University of Athens

The care of children in healthcare, like any other area, faces flat-lining budgets and administrators’ scrutiny. Many argue it is still important to look at children themselves and engage with them regarding their healthcare journey. Child friendly services and economic considerations can combine.  I have compiled a bibliography with a selection of resources on children’s participation. Key points about children’s and youth participation described are what it means both generally, in the healthcare environment and for healthcare design. The information touches on the significance of children’s participation for individuals, collectively and as a future imperative. Children’s participation is described not as a single event but as an ongoing process. Evaluation looks at some examples of best practice, literature reviews, models and research studies. There are also links to projects where value has been enhanced through children’s participation and work that points to benefits of children’s participation.

Photo: Charter of the Rights of the Child in Hospital
Second Department of Paediatrics, University of Athens

The Charter of Rights of the Child in Hospital, Greece, simply puts it in child-friendly terms “I have the right to participate in improvement of the Hospital”. Referring to article 12 United Nations Convention of the Rights of the Child, “we will ask you what services you need”, “we will seek your opinion on the design/planning of services, we will ask your opinion about the context of health programmes”.

The Children’s Hospital Australasia, CHA, partnered with Association for the Wellbeing of Children in Healthcare, AWCH, to produce the Charter on the Rights of Children and Young People in Healthcare Services in Australia. The Charter outlines 11 rights of children in healthcare, including the right to be involved and participate. Children should not be brushed aside.

The selected bibliography with current* links to information is entitled “C is for children’s and youth participation – who is involved?”. It has been compiled because this is an area where definitions can be many and varied and database searching is not easy. It is another aspect of AWCH’s advocacy work on patient and family centred care.

Link to some AWCH library resources on:


Photo: Charter of the Rights of the Child in Hospital
Second Department of Paediatrics, University of Athens

Jillian Rattray 
AWCH librarian
October 2014

(*current at the time of posting)


B is for Bowlby and “boat people” – attachment theory

Child care and the growth of love. Based by permission of the World Health Organization on the report Maternal Care and Mental Health by John Bowlby. Abridged and ed. by Margery Fry. With two new chapters by Mary D. Salter Ainsworth. [Pelican books] [Harmondsworth, England] Penguin Books [1965] Second edition, 1965

John Bowlby was a British psychologist, psychoanalyst and researcher. He was a pioneer who researched and wrote about infant and child development and the importance of bonding with a mother or mother-substitute in a warm and continuous relationship. Bowlby found growing evidence that good mental health was linked with the kind of care an infant and young child received.  Bowlby also wrote about the effects of “maternal deprivation”, permanent harm and harm that is overcome. His well-known works on infant attachment and loss are referred to today in health, psychology and early childhood education.

The World Health Organisation asked Bowlby to research maternal deprivation and the effects on infants. This was in the 1950s when the United Nations were deciding which social problems and programs were in most need of support. The report came about as people looked at care of children after WW2, including children in institutional care, many of whom were orphaned, disabled or hospitalized. Bowlby drew his work from visiting and reviewing studies in Europe and the United States. The report was reproduced and made available for a wider audience in the book ‘Child care and the growth of love’.

Bowlby looked at vulnerable mothers, children and their healthcare needs. Today’s vulnerable mothers and children include asylum seeker refugees.  The Association for the Wellbeing of Children in Healthcare has written a position statement with this focus. The policy draws on the work of the Royal Australian and New Zealand College of Psychiatrists, and the National Inquiry into Children in Immigration Detention 2004 report.

Bowlby begins, there was a common theme amongst research and evidence “mother-love deprivation” harms mental health of an infant or young child. He also described far-reaching consequences for the individual. Infants and young children at key times in socialisation need to have mother or primary carer bonding (infants 6 months to 18 months). The absence of infant attachment leads to slowed development, physically, intellectually and socially.

Bowlby describes infants and young children placed in institutional care, long-term hospitalization and foster care, some with mentally ill mothers. The research identified some of the effects of institutional care. There were children who had never experienced an emotional bond. Infants who were kept in cots, isolated, lonely, without play opportunities, who were part of a Western system with an emphasis on hygiene and lacking social and emotional care. Infants were observed rocking, listless, quiet, failing to smile at a human face or respond to a ‘coo’.

Educators of health professionals today show their students the 1952 film ‘A Two year old goes to hospital’. This is a powerful way to explore the parent-child bond, showing the detrimental effects of what happened when a child was unaccompanied in hospital. The girl is too young to understand why her mother has left her and in 1952, visiting hours were very restricted. She becomes withdrawn from her mother as a way of concealing her distress.

James Robertson produced this film and Bowlby collaborated on this work on attachment. Robertson later wrote ‘Separation and the very young’, and produced ‘Young children and brief separation’ (DVD). To read a summary of Robertson resources visit the Life Spirals blog.

With recent news and radio coverage on asylum seeker refugees and in particular, Professor Gillian Triggs’ visit to Christmas island, the plight of infants, children and mothers is concerning. It is shocking to hear about their great mental and physical stress, mothers who hold their infants with no room or clean and safe place to put them to play and develop.

Professor Elizabeth Elliott, accompanying leading paediatrician, found children who were refusing to eat, bed wetting, had impediments to their speech and poor sleep. Professor Triggs spoke of the boredom and desperation of children. There are children who will not engage in eye contact*. It is not hard to see overlapping similarities between the behaviour of institutionalized children in the 1950s and asylum seeker refugee children in these restrictive circumstances today.

Children are no longer held in detention on Manus Island
Photo from: http://www.outofsight.org.au/letters.php

Bowlby observed, gathered evidence and reviewed institutional care in an area with emerging focus. He pointed towards parent and child bonds, ways of improving emotional care and the value of further research to encourage and support families. Bowlby has not been above criticism, some researchers thought he was fundamentally on the wrong track. Others point out both strengths and weaknesses. For example, now it is recognised a child may have a personal relationship with a parent or carer and not necessarily just “mother” as Bowlby emphasised. Despite this, it is not hard to see how messages of parental involvement and emotional care of all infants and children are both valuable and relevant today.

When we read about the gravity of mothers who are on suicide watch at Christmas Island, Bowlby’s writings on the role of a mother providing support bring to mind questions on the harm being done to families. This harm is carried with the children into the future affecting their physical and mental health and wellbeing.

For further information about children in detention visit the Chilout blog  A Last Resort – ten years on from National Inquiry into children in detention and the Refugee Council of Australia. More on attachment and refugee children can be found on the Startts blogspot. The article on healing and refugee children and adolescents within a school context will be informative reading for teachers and counsellors.

Jillian Rattray
AWCH librarian
September 2014
* A report giving voice to refugee children released in 2015: The Forgotten children: National Inquiry into Children in Immigration Detention 2014, Australian Human Rights Commission. Contents include a snapshot of children in detention, Australian law and the detention of children, Government and duty of care and International law. Also reports on impacts of life in detention and identifies the needs of mothers and babies, young children, primary school children and teenagers, also unaccompanied children and children indefinitely detained.

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

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

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
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 40th 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 https://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.

Vale Barbara Holborow

Barbara Holborow, Former New South Wales children’s magistrate, has died aged 81.

Barbara has been a champion for children’s rights for many years and recently had been awarded NSW Senior Australian of the Year 2012. This is an extract from the Australian of the Year website:

Barbara’s philosophy is that ‘every child is everybody’s responsibility.’ As a magistrate, she was instrumental in setting up free legal aid for children in NSW, a care court to deal with cases of neglect and a special jail for first-time offenders aged 18 to 25. She allowed television cameras into her court, believing that an open and transparent process would help reform the system.

Barbara Holborow, Irene Hancock, Sev Ozdowski
at AWCH 2002 Conference

Since her retirement from the bench in 1994 she has continued to defend the rights of children. Over the years, many foster children have come under her care and while working at a refuge she met a young Aboriginal boy named Jacob who she later adopted.

Barbara has written three books on her experiences with children and, at the age of 81, continues her fearless crusading, lobbying government and garnering media attention.

Barbara was an inspirational keynote speaker at AWCH 2002 conference Healthy Justice for Children.


Children’s champion Barbara Holborow dies
Magistrate Barbara Holborow dies