K – is for Knowledge + patient – resource

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.

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
March 2016

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

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