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

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

Who's got a normal family?

By Belinda Nowell and illustrated by Miša Alexander
Little Steps Publishing, Glebe 2016.  ISBN 9781925117752.


“I read the book three times… it makes people feel okay about the type of family they have”, said one primary school reader

Who’s got a normal family?
‘Who’s got a normal family?’ a delegate at the recent ACWA* conference read out loud.  “Well whose family is normal?” she asked, laughing. It’s not hard to see why this recent Australian book caught the interest of many who came by our ACWA resource booth.

With two hats on, one friendly delegate working with children in out-of-home care, had also recently become a foster parent. She said how helpful this book would be for a sibling adjusting to a new family member.

Welcome to a new foster child
The story is about Alex, an easy going boy. It is news time at school, Alex is greeted with classroom cheers when he tells the children his new baby foster sister has arrived. That is all except one boy, Jimmy Martin, who has a “stomp in his step and upside-down smile”. He yells “babies are boring” and “she’s not your real sister”.

Alex is sad and asks his mum about “normal families” when he gets home from school. She pulls out his class photo and they talk about the families at school. Alex’s mum is a supportive adult presence who helps sort through Alex’s difficult emotions.

Different but unique 
This picture book entices readers with its character-filled illustrations. Each school child is introduced with their family. Alex is a foster child, Alir came to Australia for safety with his large family, Eva has a daddy but not a mummy, Henry has two dads, etc. With an upbeat tone, Alex chats about what makes each child and family unique. There’s a sense of fun and acceptance which makes this book enjoyable to read.

Something to share
Alex finds a way, with the help of his mum, to connect with Jimmy. He realises Jimmy is sad because his daddy doesn’t live with him anymore. Alex shares what he has just learned about “normal families” with Jimmy, as well as showing him his hidden blue-tongue lizard family and all ends well.
Who might like this book?

Families with infant school children, the book is aimed at children 5-7 years. Younger children and older independent readers may also find this book engaging and helpful.

More resources

• Dhiiyaan is a beautiful reading App written and illustrated by Elaine Russell, for grandparent kinship carers to share with their kids.
• Healthcare professionals may want to look at Out of homecare and healthcare pathways, by NSW Health.

You are like you and The Internet is like a puddle A Big Hug Book Series, recent Australian resources displayed at our ACWA* conference booth.

Have you found a children’s resource promoting child wellbeing to recommend? If so, please let us know.

 * Association of Children's Welfare Agencies (ACWA) is the NSW non-government peak body representing the voice of community organisations working with vulnerable children, young people and their families.

Jillian Rattray

AWCH librarian

http://Library.awch.org.au

September 2016

K - is for Knowledge + patient

How do families and young people use knowledge to manage their health?

This is part one of two blogs on knowledge and patients. We now live in a “collaborative and social era”. Part one, hones in on some positives and drawbacks of online health information today. The way we gather knowledge effects communication with health professionals.  Could there be new opportunities for families and health professionals to collaborate? Part two is about finding reliable health information online, people are more aware quality and accuracy count.

Online health information and “e-health communication”
are on trend but do they help?

Health information, how do we get it?
Millennium generation children are amongst the first to turn to digital and social media to get information. This could be a “positive”, when healthcare goes online for young people, with services such as Headspace.  Young people also need to be connected in healthcare settings. Digital access helps meet social, emotional and educational needs.

For preschool children an App with a game may be both educational and fun. Okee medical imaging, is engaging, builds skills and prepares for a medical encounter, taking away the fear factor.

Most Australians go to their GP, to find health information.  Even if we rank health professionals advice highly, families and individuals are increasingly turning to the Internet, Dr Google and digital resources. Here’s the drawback, could all this information at our fingertips, leave us more confused and lost in the “information noise”? Are people exposed to unsolicited health information and does this affect what happens between health professional and patient?

Not “just a patient”
Karen Price in her GP blog on health literacy and patients, says GPs have a complex job and a big part of what they do is teach patients. The word doctor is derived from the Latin “to teach”. Price points out, doctors and patients work together in an “increasingly educative partnership”.

GPs are aware they need to respond by providing patient held health information. This includes online information and help on ‘surfing’ the web.

Consumers of health care
Effective communication between consumers and health professionals is critical to better health in Australia. Consumer experience, understanding and knowledge are particularly relevant in an era of complex healthcare, chronic illness and rare disease.

The Knowledgeable patient: Communication and participation in health edited by Sophie Hill (Cochrane review) 2011, spotlights communication between health professionals and consumers. It encompasses people with complex health needs and the rare disease community.

A knowledgeable patient is someone who asks questions about medical information, provides insight into experiences and uses technology to find health information. As contributors, they add quality to healthcare benefitting everyone.

Learning to communicate, chapter 11, introduces steps health professionals, consumers and consumer groups can take to improve communication skills and “interaction”. Involvement and communication skills of patients and health professionals is crucial to improved health systems and outcomes.

Children as consumers
Children are frequent consumer health service users. Little was written on “enhancing the health-related communication skills of the child as a patient, the parents or siblings, or the health professionals involved” [p. 137].

Online social support and wellbeing
Online support can be both informative and empowering. A recent article found families within the rare disease community value e-health communication for social and emotional support.

What is supportive comes from evidence, research, from practice, personal stories and community, including peer support. Genetic Alliance Australia is an umbrella group for rare genetic conditions/disease. Conditions may be so rare there is no support group.

AWCH Facebook is a “heads-up” on Australian child wellbeing and healthcare initiatives with a focus on social and emotional issues of children and young people in healthcare. Find Australian health promotion events, child or family health surveys, research, reports and education. AWCH shares like-minded parent and professional posts, with emphasis on NSW and national. Visual content is also shared through pinterest.

Tracking and managing health

Families face pressures keeping up with health programs, appointments and health insurance.

Health organisations recognise people are using innovations to manage and cope with health and illness.


A knowledgeable patient is also someone who uses technology to track and manage personalised health data. People may wear connected devices and this information can be shared with health professionals. Consumers now receive screening information and test kits in the mail. Busy parents/carers turn to Apps to manage family health appointments, Save the date to vaccinate. Healthcare is delivered to the door, on the streets, community hub, over the phone or via the internet.



Access for all?
A recent report, Looking the other way: young people and self-harm, by Orygen, found adolescents and young people who self-harm received poor community response. Young people didn’t feel supported in the Emergency department and felt GPs didn’t know how to treat them.

Report findings concluded a need for youth and family resources and National standards for health professionals treating those who self-harm. Youth with lived experience of self-harm should be involved in developing resources including Apps, web-based online and peer support.

Access to reliable health information is a public health dilemma. Young people ask for their opinions to be valued in a collaborative approach.

Links
Many of us use search engines for health information and are disappointed with the results. Part 2 of this blog links to organisations helping consumers hunt for reliable information.

Jillian Rattray

AWCH Librarian
http://library.awch.org.au
March 2016

Our Stripy Baby

Written by Gillian Shields and illustrated by Paula Metcalf
Macmillan children’s books, 2006. ISBN 1405022108.

Our stripy baby, written for young children, is essentially a story about embracing differences.

Get ready for a splash of colour and an imaginative tale about a family of made-up creatures with spots - the Moon family. There’s daddy Moon, mummy Moon, Zara Moon and soon to be born, baby Moon. Young readers are taken on a journey with this endearing family and Zara can’t wait for the arrival of the new baby. She tells friend Molly, “our baby will be just like your brother Max”.

“One, two, three, four”, there are now four family members but there is something wrong. Zara faces strong feelings of disappointment, sadness and even anger. Zara wants to know why baby Zack has stripes not spots. She wants to take him back.

Mummy Moon is reassuring, “He’s our baby”, and Daddy Moon affirms, “He’s got a lovely smile”. Zara is sad and cuddles Mummy Moon. Why is her brother different? At the park Zara thinks people might stare and so she doesn’t even want to play. Attempts to change Zack by wrapping him in a long spotty scarf lead to frustration. Mummy Moon and Daddy Moon explain he is beautiful. They don’t want to change Zack. He is just different.

“One, two, three, four”, there are now four happy people in the Moon family. The story finishes with reassurance and a new beginning. Zara discovers more about Zack and finds a way to show she’s sorry. She draws something that looks like Zack’s beautiful stripes - a rainbow.

I recently read Our stripy baby to a group of young children at story time, they clearly enjoyed the warm illustrations and comforting family theme. This picture book features an engaging mix of single and two page illustrations filled with colour, humour and gentle expression. Children found it fun to count with repetition “one, two, three, four” and look for the Moon family. Among the group were two children who didn’t have long to wait for a new baby in their families and so the child care teacher had much to chat about with the children afterwards.