6 Nov 2014

D is for Diabetes

Australians can’t afford to ignore diabetes. Australian Institute of Health and Welfare (AIHW) reports, in 2011-2012 there were about 1 million Australians with diabetes. In the report How common is diabetes, you will see statistics on the different types of diabetes and prevalence in states/territories around Australia and a table including prevalence of Type 1 diabetes in children.

Resources available from AWCH Child Health Library
Awareness about diabetes is raised this week through Walk to Work Day WTW, organized by Diabetes Australia. This fundraising event promotes a healthy lifestyle for Australians building walking into their daily routine.

Another recent walking event held was the Walk to Cure for type 1 diabetes, T1D, hosted by JDFR (Juvenile Diabetes Research Foundation Australia). Find on JDFR website, information about type 1 diabetes, T1D is the fastest growing chronic disease amongst Australian children. Information for parents and carers includes JDRF’s role supporting families, meeting other kids with T1D, there’s a kid’s online community and  peer support program for parents.  Information resources for health professionals, school resources, JDFR research initiatives and more can be found on the website. JDFR was voted by Australian Charity Awards, Charity of the Year 2014.

Diabetes Australia is Australia’s leading Diabetes organization and is located around Australia. Diabetes NSW hosts a website for teens and kids with type 1 diabetes, from here find multilingual resources and resources for kids such as Professor Bumblebee's guide to type 1 diabetes, D-Zone for teens and parents and teachers will also find useful links.

Many people will find helpful, basic information to increase understanding, such as the difference between type 1 diabetes and type 2 diabetes. Here’s two information sheets with a child and family focus.
 Find essential information about type 2 diabetes including what is, the differences between type 1 and type 2 diabetes, risk factors for type 2 diabetes, how it develops, diagnosis and management. With clear and easy descriptions adults and young adults will find the medical and educational information is reliable, reviewed by the Health Care and Education Committee of Diabetes Australia. From this starting point there are links to State/Territory Diabetes Australia organizations websites.
This is a brief overview of information and includes the symptoms and causes of type 1 diabetes. Causes or triggers of diabetes are explained as well as lifelong management and the diabetes team. Type 1 diabetes is not related to lifestyle or caused by eating too many sweets. Some people carry the genes which make them more likely to get type 1 diabetes.

There are many other diabetes information sheets on medical and educational topics the category of information is listed with topics such as healthy eating, going to hospital/day surgery, taking control, medications, mental health etc. They are available for download or can be purchased in bulk.

Diabetes Australia has an extensive links page to authoritative sources such as Health direct from Australian government partners. Link through to myDr and Diabetes: tips for children or Diabetes: tips for teenagers.  On myDr, Type 2 diabetes,  find out how type 2 diabetes was often known as adult-onset diabetes or non-insulin diabetes, more  younger people are being affected and so terminology has changed.

Key organisations, such as Diabetes Australia point to this manual for parents, Caring for diabetes in children and adolescents, a parent’s manual, edited by Geoffrey Ambler and Fergus Cameron (3 MB). The AWCH Child Health Library holds a copy of the earlier edition, it is exciting to see the third edition is now online and so easily accessible (joint project of the Children's Hospital at Westmead and the Royal Children's Hospital). This comprehensive parent manual comes with illustrations and clear text covering a wide range of topics from medical to educational and social and emotional aspects of living with diabetes.

For a helpful overview of diabetes in adolescents including transition, visit Women and Children’s health network page, parenting and child health, SA.

Health professionals will refer to Clinical practice guidelines: Type 1 diabetes in children and adolescents, prepared by the Australasian Paediatric Endocrine Group for the Department of Health and Ageing, March 2005.

The AWCH Child Health Library has DVD’s and books on diabetes available for loan, such as

Jillian Rattray
AWCH librarian
November 2014

20 Oct 2014

C is for Children's and youth participation

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)

29 Aug 2014

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.