Children In Hospital

M – is for Moment of panic and Mum’s sleeping on the floor

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Moment of panic

A brown blob appeared momentarily in my peripheral vision and disappeared, I stopped. Continuing on, the motion of my swinging hair caused the reappearance of the brown blob. Standing still, I sensed a slight weight, something was there… and it was starting to move.

A moment of panic ensued and with a hasty flick, the small huntsman spider dropped to the floor, scuttling across tiles, sinking low into a groove, not daring to move. This young Huntsman with brown translucent legs, had been taken from familiar surroundings and catapulted into a strange environment – my bathroom. 


Mum’s sleeping on the floor

This reminded me of a different kind of fear, not of spiders but of fear and children in hospital. I’d just read an article written in 1982 about one parent’s experience* with her seven-year old in hospital. Her sick boy, Sam, was in a ward with other children also taken to hospital in an emergency. If I were to give her article a title I might call it, “Why I chose to camp on the hospital floor”.
 
Not long ago the expectation was that parents didn’t stay with their children in hospital and visiting hours were restricted (a paediatric nurse at a Sydney children’s hospital recalls many tears as visiting time on Sunday afternoons finished). The impact on many children, especially young children was large. Following AWCH’s recommendations, Australian hospitals began promoting family centered policies, parents were encouraged to stay. 
 
This parent’s experience is worth reading because she challenged expectations in a leading children’s hospital, her story was firstly published in the Age newspaper, then AWCH magazine, Interface*.
 

Fear and separation

The mum, Janet, gave a moving account of five nights with her son in hospital. She knew staying would be best. This was reinforced when on the first night, another child awoke screaming, a nurse rushed in and this panicked child grabbed her crying “Mummy come quick”.
The child in a bed nearby had been taken from home, was sick and separated from his family. Hospital was a strange and frightening place. He had an intravenous drip and splint attached to his arm. Later, a two year old was screaming and inconsolable, her mother had gone home. The nurse had given sedation to stop crying.

 

Poster was one of six from AWCH (SA)  issued by NAWCH, London, 1978

 

To go home or stay on the floor?

Sam’s mum, it had been suggested, should go home because her son was old enough that “he should be able to cope”. With an upright chair to sleep in, Janet stayed. At 3 am another nurse approached her with a strip of foam rubber and a towel, she “hit the floor with relief”. The next night she had a sleeping bag from home. Janet experienced some odd looks from hospital staff but she was pretty much ignored. This mum was courageous, doing what she thought was best for her child despite hospital protocol.

At home, Janet revisited scenes of children screaming for their parents. Her greatest affirmation came from Sam. Hugging her close, in a whispering voice he said: “thanks for staying with me in hospital mum”.

“thanks for staying with me in hospital mum”



AWCH helps children

AWCH “pioneers” were also courageous, working hard to change care for children and young people in hospital. They were part of a social movement, linking with international sister organisations. AWCH’s first benchmark policy, A recommended health care policy relating to children and their families, was published in Medical Journal of Australia, 1974. Your Child in Hospital (pamphlet),.a Joint effort of Division of Health Education and AWCH, was significant as the first Australian education of parents about sick children and hospital. Written between the lines was a reminder to health professionals of their role in caring for children. With great interest, ¼ million pamphlets were printed.


AWCH continues to produce policies, work with key stakeholders (CT scans – information for parents and carers), guide the provision and advocate for rights of children and young people in healthcare. 

AWCH Ward Grandparent scheme supports children and parents or carers in hospital. Volunteer grannies, recognise it isn’t possible for parents or carers to always stay with their child. 

Your comments and impressions are welcome and can be added below.

 

 

 

 

Jillian Rattray

AWCH Librarian
http://library.awch.org.au

 

October 2016

 

 

 

Reducing unwarranted radiation exposure to children and young people from CT scans – recource

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In Australia, many computed tomography (CT) scans are performed on children and young people each year. CT is a valuable diagnostic tool, especially in emergency situations. However, CTs use higher doses of radiation than other types of medical imaging tests, and their use in childhood or adolescence has been linked to a slight increase in developing cancer later in life.1
Children and young people may also undergo a cone beam computed tomography (CBCT) scan as part of their oral health care. CBCT scans can provide dentists, orthodontists and surgeons with important information to help them with decisions regarding oral health care. While typical radiation doses in cone beam CT are much lower than those used in medical CT, use of radiation in oral health care should also be kept as low as possible.

Information for parents

If your child has had a CT or a CBCT scan, or may need one in the future, do not be alarmed. Talk to your child’s doctor or dentist about the benefits and risks of the test. You may want to ask:

  • how the test will improve your child’s health care
  • whether there are alternative imaging options, and
  • if a CT scan is necessary, how the radiation dose will be kept as low as possible for your child.

Always let the doctor or dentist know about any other scans your child has had and take any previous scans with you to appointments.
If your child is referred for a CT or CBCT scan, it is important for you to remember that a scan which is warranted, will almost always result in more benefit than harm to most patients.

The Australian Commission on Safety and Quality in Health Care (the Commission) has partnered with the Association for the Wellbeing of Children in Healthcare and NPS MedicineWise to develop a brochure that answers questions that you may have if your child needs a CT scan.  A companion poster has also been developed by these organisations for display in doctors’ practices, medical imaging services and early child health services.

 

In partnership with the Australian Dental Association and other dental organisations, a brochure for parents and carers and a companion poster on CBCT have also been produced.

Support for health professionals

To support doctors requesting CT scans, the Commission has also partnered with the Australian Radiation Protection and Nuclear Safety Agency to update a fact sheet providing information on CT scans for children, including the typical radiation doses for various scans.

To support all people involved in the CT patient journey, the Commission has partnered with Healthdirect Australia to establish a web page dedicated to hosting these and other resources on CT scanning for children and young people. Visit www.healthdirect.gov.au/ctscansforkids for access to the fact sheet, brochures, posters and videos and interactive tablet games to assist parents and carers to prepare a young child for a CT.

For more information about CT scans for children and young people, visit www.healthdirect.gov.au/ctscansforkids.

_________________________________________________________

 1 Mathews JD et al. Cancer risk in 680,000 people exposed to computed tomography scans in childhood or adolescence:  data linkage study of 11 million Australians. BMJ.2013;346:2360

Dimity Herden
Senior Project Officer
Australian Commission on Safety and Quality in Health Care

The three little “P’s” – Playgroup and Peppa Pig – review

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Children were excited when Peppa Pig Goes to Hospital was the story of the day at one Sydney play group. There were about 15 children, mainly two year olds and pre-schoolers, who sat on the story time mat. During playtime they couldn’t wait to put bandages on their dolls or teddies and one boy carefully bandaged his dinosaur’s tail. Craft was a lot of fun with Humpty Dumpty, both before and after the accident, some children preferred the ambulance craft. It was a bustling morning but there was time for children to select a book from our display and have a quiet read. A few did this.  There were over twenty books to browse or borrow and several parents commented about the range of books available.

Before the story, children were told, ‘When we go to see a doctor or nurse we can take a special toy or book and we will have our mum or dad or person who cares with us’. Peppa pig’s hospital room had a bright rainbow and after the story I commented, ‘We can always play and draw pictures when visiting the doctors or in hospital’.

The playgroup was well equipped with hospital play kits including stethoscopes, bandages and toy thermometers. If any toy was short of a bandage, a box of bandaids was within reach. One little girl showed me green dots all over her baby’s head. She and her mother had carefully placed bandaids over the middle of the baby’s head covering the ‘dots’. This was clearly a topic the kids related to.

I was the first of several visitors for term three with the theme, ‘people who care for us’. The playgroup leader introduced the topic talking about doctors and nurses and the children sang several action songs about being sick, including ‘humpty dumpty’.

When the doll, teddy and dinosaur play began a brochure was handed out, ‘Hospital preparation for pre-schoolers – time well spent’. In amongst the fun I was hoping to convey to the children that when we are sick or hurt, it is not because of something we have done. Also if we are sick, doctors and nurses are there to help us get better and Mums, dads or the person caring for us will be there to give us a hug.

Whilst the children played, parents were reminded that fear of the unknown is an issue for young children and that pre-schoolers need reassurance. When we think of going to hospital, we think about the role of health professionals and may not stop to think about the role of parents. My take home message for parents was that their role is really important too. Parents and carers help their children cope with fear by being calm. Playgroup parents laughed at this point, recognising this is something easier said than done. I showed them two books Help! My child is in hospital and Everybody stay calm.

Before my voice faded into the general hubbub, my final point was that it is important to be informed and not to be afraid to ask if something is not clear. Parents can ask the hospital what resources are available to help prepare. The AWCH website and Dr Angela MacKenzie have many helpful links for parents and carers who want to prepare their children in different medical situations. A special mention was given of the wonderful free app designed for and with young children, “Okee in medical imaging”.

A chat with staff at a local pre-school followed. It was not long after I had arrived when a teacher pointed out the hospital corner, put together because of a child’s recent hospital stay. The staff borrowed books to read to their classes and enquired about books for children with special health needs or those who have sick parents.

One of the most poignant reasons for preparing children for hospital came from a playgroup mum. She shared an experience as a three year old child. She recalled how her parents said she was going on holidays. It was devastating to find this was misheard and that instead, her parents had said she was going to hospital. This became a traumatic experience and hard to get over. I finished the morning with a greater certainty that preparation is time well spent*.

Perhaps the three little ‘ps’ stand for – preparation, playgroup and Peppa pig.

Jillian Rattray

AWCH librarian
http://Library.awch.org.au
July 2015

*Dr Angela MacKenzie encourages parents to do their “homework” and be prepared.

An EA/TEF Story Inside and Out – review

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I will never forget the moment my world turned upside down: on Friday the 13 March 2009.

I was thirty weeks pregnant, my husband was out of town and I was alone in a city I had just moved to.  I was folding laundry when suddenly, I felt something was happening, my water broke. “Please, not now baby!” I pleaded while holding my deflating belly.

Twelve hours later, Castalia’s heart was dangerously slow and I was rushed to the Operating Room for an emergency C-section. Even as a first time mother, I knew very well what a quiet birth meant. I felt numb.

I vividly remember the painfully heavy silence growing in the room, even when I finally found the strength to ask where my baby was. I was laying alone on the operating table, feeling the rhythmic pull of the stitches applied to my vacant womb, preparing myself to be told that my baby was dead.

The next thing I remember is slowly waking up and seeing a figure, a doctor stood by the door. It took a lot of effort to focus on the words he was saying, I was feeling very groggy still. In a detached voice, he announced:  “We suspect that your infant has Esophageal Atresia. She will be transferred to the Children’s Hospital to get evaluated and possibly undergo surgery today. We need you to sign some papers.”

“-Esopha…what? Can you explain what this means in terms that I can understand?”

Just like most people, I had never heard of this GI (gastro-intestinal) birth defect that affects one out of 3500 births. In a nutshell, it means that her esophagus, her food pipe, was not attached to her stomach. In her case, her upper esophagus ended in a pouch while her lower esophagus connected her stomach to her trachea.

I had no idea what that meant for her future or for ours.

EA/TEF (Esophageal Atresia and Tracheoesophageal Fistula) kids seem to have widely different journeys that do not simply stop at “getting repaired.” Even if their primary closure is successful, in most cases the esophageal muscles and nerves don’t work properly. It can make eating and drinking difficult or impossible, resulting in random choking episodes, strictures or Gtube feedings.

Furthermore, about half of them, like my daughter, have other birth defects.  Most also have GERD and will need to be on antacid medicine their whole life.  EA/TEF kids tend to get sick more often and stronger than other children but there hasn’t been much research to truly explain why.

They often have tracheomalacia – floppy airways. It can make it hard for them to breathe, especially when they are sick and it gives them a deep barky chronic cough that earns them lots of stares in public.
My resolution for 2015 was: to find a way to raise awareness and money for the condition. To accomplish both, I decided to write a children’s picture book called “An EA/TEF Story Inside and Out” to empower EA/TEF children, educate the public about the condition and offer ways for others to help.

It is available on:
http://www.lulu.com/content/paperback-book/an-eatef-story-inside-and-out/16463739
Or visit www.eatefbooks.com for more information. It is available worldwide in English (American and British Spelling) and in French. Coming soon in Spanish, Italian and Croatian.

Thank you for your support and please help spread the word about the condition.

Vanessa Munsch

Keeping Kids’ Needs in the Picture – resource

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When it comes to medical imaging why won’t kids just smile for the camera? Children have trouble staying still at the best of times and when feeling unwell, unfamiliar experiences can become especially daunting. Their parents are often anxious too, about their child’s health and radiation risks. As children can have increased risks from radiation exposure so it’s important that scans are completed with a minimum number of takes.  So how do we get kids to comply?
Paediatric hospitals have the benefit of staff who are trained and experienced with kids. Many employ Child Life Therapists specifically to prepare children for procedures like scans and help them to develop coping strategies. University trained Child Life Therapists have extensive knowledge of both child development and medical procedures. This places them in a unique position to bring the two together as harmoniously as possible.
But what about the non-paediatric facilities where staff are trained for, and treat, mostly adults? In 2012 The Royal Australian and New Zealand College of Radiologists approved a new policy on Paediatric Imaging to guide those clinicians in how to limit radiation, trauma and possible pain to children in their care. It is also recommended reading for parents wanting to understand the options for children but please note the ages mentioned are a guide only. Younger children have achieved successful scans without sedation and appropriate preparation.  For further research read here: Minimising the use of anaesthesia / sedation in paediatric imaging and radiotherapy : The role of play therapy and patient education or if you want quick information, see our tips below …
When your child needs a scan:  How you can navigate these potential pitfalls.

1) RADIATION:   

 

 

  • Check with the doctor: is the scan necessary? Is it need immediately?  Are there any alternatives with less radiation?

     

  • If booking with a private radiology practice for a non-urgent scan, ask if Radiography staff have experience with children.  How, specifically, do they help kids with scans? If you don’t feel assured of a child friendly approach, then shop around (if possible).

 

2) INJECTIONS:

 

  •  Check in advance whether the scan requires an injection of contrast. This will allow you to prepare your child for every aspect of their treatment.
  • If yes, then request a numbing cream such as Emla or LMX4 be used.
  • Is your child needle phobic? Discreetly let the staff know. If child life therapists are not available, try distracting your child with a book, game, or reassuring words.

 

 

3) SEDATION:
There are instances where it’s necessary to sedate children, either to avoid pain or because zero movement can occur.

 

  • Check the necessity for sedation, which type, and the risks associated.
  • Prepare your child for having that type of sedation
  • If general anaesthetic will be used, prepare your child for an overnight hospital stay.

 

4) BREATH HOLDS:

 

  • Is your child required to perform breath holds for their scan? These are generally needed for abdominal and chest scans. Learning this skill in advance of scanning helps the radiographer get the pictures they need. This means less retakes and less radiation.
  • Take the time to coach your child in breath holding in advance. Try to make it fun by doing it in the bath or pool, using counting games and blowing bubbles.

 

5) WAITING LISTS:

 

  • Non-urgent scans at paediatric hospitals may involve waiting lists. If you’d like the scan sooner ask your referring doctor if it can be done by another hospital or clinic. Consider your options in consultation with them.
For further assistance with preparing children for scans and injections, or appropriate distraction techniques during those procedures, contact Child Life Therapy at your child’s hospital. If attending a private clinic you can consult a Child Life Therapist in private practice.
Blog written by: Renee Campbell
Renee Campbell is a university trained, registered Child Life Therapist with the Australian Child Life Therapy Association (ACLTA) and a member of the ACLTA Certification Committee.
Renee has over 7 years’ experience as a Child Life Therapist (formerly Play Therapist) at the Sydney Children’s Hospital Randwick (SCH) where she helped establish their MRI Play Therapy program. In that time she conducted research into children’s coping in medical imaging and helped children as young as 4yrs old to have their scans without anaesthetic.
Currently, Renee remains employed at SCH part-time in the Medical Day Unit assisting children and adolescents to cope with invasive procedures. She also has a private practicehelping children with healthcare needs and parents of newborns with sleep guidance.

Little snails and tales, at lunch with hospital ward grandparents

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At last an opportunity to try snails in Australia. When the time came to order I was absorbed listening to tales of hospital ward grandparents. With menu in hand and so many delicacies, I just pointed to the middle of the page, ahhh… duck liver pâté. All was not lost, at this gathering of over thirty hospital ward grandparent volunteers from over 6 hospitals across NSW, plates were scraped clean and for each of the three courses nobody appeared to regret their order.
“Grannies” who normally couldn’t envisage making room for dessert, simply didn’t have qualms when the time came. Once more, plates were left clean and all that remained were a few drips of sauce. Very little caramel was left on mine.
However, this was more than a delicious lunch at The Little Snail restaurant. It was an opportunity to celebrate National Volunteer Week 2015 and recognise the work of the AWCH Hospital Ward Grandparent volunteers to thank them for all they do to enhance the lives of sick children and their families in hospital. Volunteers spoke of times spent with shocked families in emergency waiting rooms, sharing toys and books with children and just being a supportive presence for parents. It was a proud moment when photos of a young boy were shared amongst volunteers who had cared for him over a number of years. They were on a journey with him and his family. This little boy with chubby cheeks and a winning smile had ‘graduated’ from hospital.
An informative guest speaker from Genetic Alliance Australia , Dianne, talked about their important work, giving listeners much food for thought. Genetic Alliance Australia supports families from the point of diagnosis and works towards making lives better for people living with rare diseases and genetic conditions. GAA is housed in the Garvan Institute of Medical Research building. This is where scientific advances are initiated and recent improvements in bringing early diagnosis to Australians has had a huge impact on people’s lives.
Lastly, in the spirit of fun, AWCH decided to give away some books that the ward grannies could read to their children. For a change the books were not about being sick. Instead the thought was to spark children’s imagination and take them to another place. The books aimed at pre-schoolers and school children were, Don’t let the pigeon ride the bus, Don’t let the pigeon stay up late, Tashi, Aussie bites : the bugalugs bum thief ….
I then highlighted a few recent books written to help parents cope with their child’s medical and surgical procedures and hospitalisation. These too were snapped up. They were Help! my child’s in hospital, by Becky Wauchope and Everybody stay calm, by Angela MacKenzie. I held tightly on to the one American book, it was harder to get Parenting children with health issues and special needs : love and logic essentials for raising happy, healthier kids –  people are invited to borrow this book.
Jillian Rattray
AWCH Librarian
May 2015

 

Calico Dolls – A process of play – resource

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by Maree Matthews and Gerry Silk 
Kiwanis International, 1994.

 

What are calico dolls and who makes them?
Calico dolls are simple in shape and made with plain fabric. The dolls are without features and they are plumply stuffed with polyester fibrefill, so they are lightweight. They are made in a range of skin tones. Children draw with textas or felt tip pens on plain calico giving personality and so each doll is unique. Since 1993 over 60,000 dolls have been made for children in hospital. Most of the dolls are made by volunteers and in the past Girl Guides have made calico dolls for AWCH in Sydney.
Where and how are they used?
Calico dolls are used to help children in healthcaresettings: in hospital emergency departments, radiology departments, routine healthcare admissions and when children are transported between healthcare settings. Calico dolls are also used in community settings by psychologists and child life therapists.

Health professionals such as child life therapists and nurses use the dolls with role play to help children, particularly younger children who are not abstract thinkers.  The dolls help prepare children for common medical procedures such as IV insertion, suturing, blood tests, insertion of naso-gastic tubes, changing dressings, manipulation and plastering of fractures under local anaesthetic and  X-rays

Calico dolls have been used to help transition children to hospital and medical procedures. The play is therapeutic because it gives children permission to express themselves. The role play helps children by providing them with emotional support when they are in unfamiliar healthcare places and having unfamiliar experiences.  

 

She coloured in the doll, giving it a happy face and a red line down its right leg which she explained as “the dolly’s sore leg”.

The dolls are also known as trauma dolls and can provide a positive way of coping, reducing stress and trauma. Children become empowered because through doll play they know more about what will happen to them and they can express themselves. Through parallel play they can tell family, friends and health professionals about what is happening to them and how they feel. How the doll is used is up to each child, their personality and developmental stage. Some children will focus on the doll as a means of gathering information and other children will use the doll as a tool for self-expression as well as understanding.
Calico dolls : a process of play is a great book for introducing health professionals and students to the value of calico dolls and their uses. Vignettes illustrate some of the uses, such as for diversion from pain, discomfort, anxiety and boredom. Other uses are for expression of feelings, as preparation for painful procedures, when working with siblings, for children who do not speak English, in bereavement care and for parent involvement. The book also explains how health professionals can make doll play a successful experience as well as how to talk to children in health care settings.
Calico dolls: a process of play is available for loan from the AWCH Library. The AWCH office also has a doll pattern for people who would like to make one.
Reviewed by:
Jillian Rattray
AWCH Librarian
February 2015

Painful paediatric practice

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I was out to dinner with my girlfriends last night and at dinner the topic of pain relief in hospital came up. One of my girlfriend’s children had broken his arm and to fix the fracture pins had been placed in his humerus. To have pins removed, my friend took her son to the local paediatric hospital. Before Bob had his pins removed he was offered no pain relief and this is where the story really starts…..

To remove his pins Bob was placed in a chair. His mother was asked to sit next to him.  A clown doctor was there to distract the child whilst the pin was being removed. To remove the pin the doctor used pliers, which slipped as the pin did not come out easily. This process caused Bob a great amount of distress…. However, as this was happening, the clown doctor was attempting to put a red nose on the mother – impeding her ability to comfort Bob. In addition, there was still one more pin to be removed. Yet by this time the child was hysterical and distraught.

A comedy of errors, or a sheer lack of planning and consideration for the needs of Bob and his mother?

The reason I wish to share this story is that this type of situation exemplifies why AWCH is still relevant in 2014. In our 40 year history we have made lots of progress in advocating for children and their families as they navigate the health care system. However stories like Bob’s and Betty’s still exist.

Betty is an intelligent and articulate woman. She told me that she placed her trust in the medical staff and that if they said that this procedure did not require any pain relief then Bob would be fine. Once Bob became distressed she felt she had no control over the situation and that all she could do was comfort Bob to the best of her ability at that time.

This happened two weeks ago, and prior to the pin removal Bob was always a happy go lucky child with a ready smile and a cheeky sense of humour. Since the procedure he has been having nightmares, being argumentative at school and is scared to play footy or use him arm too much.

For me this story shows that AWCH is still very relevant today and the work we do is still needed.

Ally Hutton
AWCH President

Thanks to Bob and Betty for sharing their story (real names not used)

The Together Stories Series – review

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By Trish Dearn, illustrated by Lonica Lee
Children’s Cancer Centre Foundation, Richmond Victoria, 2013. ISBN 9780992334260 (paperback)
http://cccf.org.au/

Infant school and primary school children who are living with childhood cancer will find “the Together stories” very engaging. The stories may help them to prepare for hospital, life experiences as well as think about ways of coping and building strength through difficult circumstances.

The books are written with made-up characters, from a child’s viewpoint. The familiar language used is what you might find in an Australian home, school or children’s hospital. Trish Dearn draws on her experience as a parent of Charlotte, who journeyed through leukaemia treatment to become a happy healthy girl.
Each book taps into different parts of a child’s cancer journey and feelings are expressed through the challenges. The books focus on adapting, coping and empowering through changes in a child’s health from diagnosis, hospital life and returning after treatment to home, school and community life.
Children will want to read each book cover to cover, finding easy-to-read font and colourful, expressive illustrations. The books are similar in formatting to what you might find in a school reader. They have a practical gloss cover for easy wiping.

The Together stories are simple to read and yet strong in communicating some of the social and emotional hurdles children with childhood cancer face.

The books may be borrowed from the AWCH library, to find out more about each book in the series visit the following links:

 

Review by: 
Jillian Rattray
AWCH Librarian
July 2014 


Extreme parenting: parenting your child with a chronic illness

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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

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