Knowledgeable Patient

L is for Link to health information – resource

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Searching for health information? 

Here’s some tips and tools to evaluate your way through the information jungle and link to better information


Are you looking for health information for your child? Perhaps you are creating a service for children or young people or even finding information on how to involve them? Whatever the reason, finding reliable information is important. The internet can be a “jungle” and searching for online information is often time consuming and confusing. The information age and deluge of data, means it is becoming harder to separate facts from pseudo-facts. Knowledgeable consumers evaluate information to make good decisions for their health and quality counts.

Daintree rainforest, north east Queensland


Families and sharing information

As consumers and healthcare professionals partner in care, health information is shared. Families living with chronic illness, complex health conditions and rare diseases are often experts in their child’s condition. Sharing helpful information and professional-consumer communication is the focus of our blog “K is for knowledge + patient”.
 

Consumer health information in Australia

Australians search for free, reliable information at HealthDirect (supported by state and Federal governments). The focus is on safe, practical information, including an A-Z of health topics, medicines, symptom checker and service finder. Facts or fiction? has consumer tips on seeking trustworthy online information. Don’t want to read… there’s a helpline to speak to a registered nurse, 24/7 and healthdirect app, which is also free. 


Two other resources with “user-friendly” health information are Health information and health products by BetterHealth channel and Raising Children Network.  At Raising Children Network find “My neighbourhood”, parents/carers enter their postcode to link to local services and link to intercultural health information.


Evaluating health information – USA

Go to MedlinePlus, (the world’s largest medical library), or view a video tutorial (from USA National Library of Medicine) for more information. See also, Finding and evaluating online resources, 5 quick questions on social media resources (USA National Center for Complementary and Integrative Health).

Do you want to Trust it or Trash it? This quality assessment toolbox was created by Access To Credible Genetics (ATCG) Resource Network. There is also a developer toolbox for creating educational resources. MLA, the Medical Library Association, offers find good health information and top health websites.


Evaluating health information – United Nations and Europe

Health on the Net Foundation (HON), created the HON code, search, tools and topics for reliable information. The code provides a stamp of approval, good websites can approach HON to see if they are up to scratch. Now 20 years old, this NGO is accredited to the Economic and Social Council of the United Nations. Look for the HON code on Australian websites too, Australasian Society of Clinical Immunology and Allergy.

A useful website? European Commission has a quick checklist for useful websites, with pointers about whether a site is user focused.

Communication between families and health professionals

Access to reliable information should help families and healthcare professionals communicate and make decisions. The ability to ask questions about suggested treatments and procedures is important. Choose Wisely Australia, is an initiative from NPS MedicineWise. Look for 5 questions to ask your doctor.

Questioning quality of  information 

When searching for information, ask questions about information quality and avoid making assumptions. For example, an “expert” author may write about a topic they know well and also about other topics they know less about. Are we likely to rely on both equally, the topic the “expert” knows less about may not be as reliable.  Look beyond, politics, fashion etc. and at strengths and weaknesses of information.

The Knowledgeable patient: communication and participation in health. Edited by Sophie Hill available at AWCH library 613 HIL 1

Infographics

Infographics are now used more often because combining images together with health information can be very powerful. Complex health messages are shared more easily and quickly. Health information is communicated across cultures, age groups and literacy levels.


Organisations and government bodies create infographics, apps and digital technology to promote health information. Reliable information, based on children, young people and family needs, must under-pin any user-friendly format. How can children and young people be involved in creating something that makes sense to them? Investing in Children is one organisation that created films to celebrate their work on child rights and services based on the needs of children and young people.



Linking people + digital information

Whether searching via google scholar, government websites or databases (via libraries or health portals), journeying through the “information jungle” is challenging. Healthcare professionals and consumers link in the lookout for helpful information for healthier lives.

Health literacy
Health literacy refers to the ability individuals and communities have to engage with information and services. Visit the OpHeLia project, Deakin University, for information on health literacy.

Meaningful information is not just something we locate. Useful information is developed when individuals and community are involved and real needs are identified.

 The Australian Digital Health Agency has conducted a survey to find out how Australians engage with digital services and access information to improve their health and wellbeing. The National Digital Health Strategy is underway. Emphasis is placed on families and individuals, with the slogan “Your health. Your say.” 

Consumer Health Forum highlights the value of health literacy in their submission on the National Digital Health Strategy. People need to find, understand and use health-related information and services, to make good decisions about their health. Find out more in their “response to questions for healthcare consumers, carers and families”, p 6.

Join the Australian digital health access conversation!

Jillian Rattray
AWCH librarian
Email: Jillian@awch.com.au
AWCH Library

K – is for Knowledge + patient – resource

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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

8 topics young people with epilepsy want you to know about – resource

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Young people and Epilepsy is a DVD produced in partnership with Epilepsy Foundation Victoria which presents an insight into what it is like for seven young people living with epilepsy. Topics covered include:

1.     diagnosis

2.     symptoms and seizure 
3.     medication

4.     who do you tell 
5.     challenges 
6.     getting support 
7.     looking ahead 
8.     words of wisdom


The discussions help create awareness about health information regarding Epilepsy including the different types of epilepsy. One of the goals of the DVD is to create community awareness and understanding to reduce the impact on individual lives.

 

By listening to the personal accounts of the young people, viewers find out what it is like for them. Symptoms, medications and challenges vary yet these young people all work towards self-control and management of epilepsy in their lives. Some of the challenges faced surround education particularly regarding absence from school and missed work as well as life at school amongst peers and teachers. For one young person a challenge was distance travelled and access to appointments and services as well as the impact of this on his family.  Dealing with tiredness, moodiness, as well a range of side effects from medications affect how the students feel. Social issues are talked about and gaining support from family, friends, health professionals, teachers and counsellors is essential.

 

At a time of rapid development and change, the young people provided insight into what is of importance to them and how they live with epilepsy. They provide positive insights into how they have faced and overcome challenges. Some of the young people have been living with epilepsy for a number of years and spoke about how it has changed their lives in many ways and not in others. Personal characteristics such as self-confidence and self-control have been developed. For example, several young people talked about getting enough sleep to meet the challenges of studying in high school. A few spoke of not drinking alcohol and the importance of looking after their health.

 

There is a section at the end for teachers. The benefits of the DVD as a tool for great learning opportunities in the classroom are highlighted. Ideas about how to use the DVD are outlined, including as a themed approach, for focus groups, raising health awareness and as awareness on chronic illness. The personal approach adds rich material and provides a unique opportunity to view chronic illness in a positive way.

 

The DVD can be used for professional development of various staff members at school and support information regarding a child at school with a chronic illness.Teachers will benefit from having reliable information at hand, providing support and follow-up for students as well as looking out for students who may be vulnerable.

 

The young people in this video have bravely talked about Epilepsy. They have told us what Epilepsy is, how they live with it, the negative impacts of living with epilepsy on their sense of who they are, as well as how they have overcome challenges. Community awareness does much to encourage children, young people and families on their journey with epilepsy.

 

Need more information?

 

If you would like to view more about epilepsy the AWCH library holds another DVD, Epilepsy in childhood which includes personal accounts from 5 families. Adults and two children talk about their experiences. This DVD covers the impact of epilepsy on both the child and their family. 

 

A comprehensive book, Growing up with epilepsy: a practical guide for parents, looks at many aspects of epilepsy addressing challenges found at different stages of a child’s life. Under basic tools, find out about understanding epilepsy, challenges of living with epilepsy, epilepsy at the “dinner table” and epilepsy goes to school. Although written in an American context the author, Lynn Bennett Blackburn, pediatric neuropsychologist at St Louis Children’s hospital, has much to offer parents at different stages of their child’s journey.

 

For more school, student and teacher savvy information, head to Epilepsy Foundation of Victoria’s Smart Schools program.
Jillian Rattray
AWCH librarian
March 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

C is for Children’s and youth participation – resource

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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
library.awch.org.au
October 2014

(*current at the time of posting)

 

Prescription for success: supporting children with Autism Spectrum Disorders in the Medical Environment

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Prescription for success: supporting children with Autism Spectrum Disorders in the Medical Environment

Hudson, Jill
Shawnee Mission, Kan.: Autism Asperger Pub. Co., 2006.

 


Written by a Child Life specialist (Play therapist) from John Hopkins Hospital, this book is essentially aimed at supporting families. It is a communication tool for parents of children with Autism Spectrum Disorder (ASD) to use when visiting health professionals. The book starts with a look at the medical encounter and presents this experience from the child’s point of view. The title “Prescription for success” reflects the focus on preparation both prior to and during the child’s medical encounter.
The motivation for the book is to support children with ASD better, health professionals in hospitals, doctors’ surgeries, dentists, administrative staff and others will be learn more about the children’s needs from this overview. Importantly, the book is engaging because it is written in a friendly, easy-to-read format and includes practical and creative techniques. Chapters cover the Medical encounter; characteristics of children with Autism Spectrum Disorders; developmental levels; assessment; interventions and supports (pp 49-73) and effective implementation of interventions and supports. A large section on interventions and supports will help to bridge knowledge gaps  medical professionals may experience.
Find also appendices with the role of service providers as well additional resources and games to prepare for medical encounters. There is an accompanying CD with forms, activities and games worksheets which can be printed and duplicated. Illustrations are in black and white. More resources of this nature which are both family-centered and helpful for health professionals, would be welcome.
This book is available for loan from the AWCH collection at call number: 618.9285882 HUD 1

 

Book Review written by
Jillian Rattray
AWCH librarian

 

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