30 Mar 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.

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

21 Jan 2016

J is for Joking Around in Hospital

Mention the word “hospital” to a child and chances are thoughts of fun won’t spring to mind. This is with good reason. Infants, children and teenagers in hospital or facing repeated hospital stays understand about pain and fearfulness. Sick children see hospital differently from adults. Children’s thoughts about hospital also differ depending on their age. Young children may want more than anything to have their family close and sometimes this isn’t possible. They also want lots of play and toys. School children often have many questions and need answers about what is happening. Adolescents value privacy and social and educational spaces. Young patients surveyed in a recent report Admitted children and young patients survey results 2014 indicated there was room for improvement in what is available to do in hospital (more books, games, toys).

Hospital, a friendly and healing environment?
For children and young people the hospital environment is not just about clinical care. Human needs count. An interactive, engaging and aesthetically pleasing environment and a friendly, caring welcome from the hospital community is important. Children find ways to connect with their environment, such as creating a personal bedside with pictures, photos, decorations and cards.  Children’s hospitals make their environments more child-friendly through bright colour, plants, toys, artworks, arts and craft, books, a visit to the hospital playroom, games room, multi-sensory room, healing garden, natural space or playground. Child-friendly places where family can gather, play and be together make all the difference.

Children and young people’s social and emotional needs
One study looked at the views of young children and found that children between five and seven years like “funny”, “friendly” and “happy” doctors and nurses. Being in hospital and a strange environment is challenging, particularly when children aren’t prepared for the experience.

Clown Doctors
How can “joking around” help children in hospital? Clown Doctors™ are amongst the people in hospital who help kids cope. If you have met one you will know they simply ooze fun. Their tools include a “goody bag” of gags and a fine appreciation for quirky antics and silliness. Perhaps Clown Doctors are the antithesis of all things serious in hospital but they do play a serious role. Clown Doctors take therapeutic play and art forms, such as drama, music and song, jokes and gags to hospital bedsides, emergency, preoperative rooms, wards, playrooms and other hospital spaces.

Clown Doctors understand about the feelings of sick children, their families and health professionals who they meet. Sick children have a changed body image and find themselves in a passive patient role. Clown Doctors turn things upside down using humour. The Clown Doctor, has a white doctor’s coat, with bright collar, maybe a tie and “medical equipment” but that’s where the resemblance stops. The rest is very much “clown”.

 Clown Doctors dose sick children in hospital with fun and laughter!

Clown Doctors unique dress mode suits their unique task. Using a toolbox of skills and understandings, they modify and interpret play and activities to fit with a child and family’s needs and responses. Clown Doctors help reduce anxiety and emotional responses in preoperative rooms where children and parents wait before minor operations. In some hospitals, Clown Doctors work in Emergency helping children by distracting them during painful procedures. The positive impact lasts beyond their interaction. Clown Doctors bring joy to children with serious illness, who experience extended and repeated hospital stays. Children are transported out of the medical, into the magical with humour and laughter.

Who is joking around now?
A sick child may swap roles and “become” the doctor who practises with medical play. This contrast leads a child into a stronger place. With the positive benefits of laughter children relax, have reduced muscle tension and pain and stress are taken away.  They cope with sad and hurt feelings and feel good and in control. Clown Doctors also bring humour and laughter to parents, siblings and carers as well as healthcare professionals. Happier and less anxious families and health professionals journey with children towards better health.

Clown Doctors™ is run by the Humour Foundation and does not receive government or hospital funding. They rely on community support to fund programs, visit their website to find out more.

Thank you Clown Doctors™ for contributing photographs.

Jillian Rattray
AWCH librarian
January 2016

25 Nov 2015

I is for Immunisation

It was early spring. At a gathering of friends my son began to cough. His face turned red. He calmly got up and walked away doubled over. Concerned adults looked on. One jumped up and asked “is he choking?” This was the aftermath of whooping cough - the 100-day cough.

On a grey rainy day, listening to the radio, a segment on whooping cough was announced. There’s a spike in whooping cough (NSW Health recorded 3134 cases in 2014 and 8621 cases so far in 2015). Guest, Peter Collignon, ANU Medical school, spoke about timely molecular tests, which detect the DNA of bacteria that cause whooping cough.  The infectious nature of this respiratory disease produces toxins which damage airway linings. Infants have very little protection and are at higher risk. The vaccine has 75% + immunity, waning over time.

Prof Peter McIntyre, Children’s Hospital at Westmead speaks in an informative short film. Parents explain the tragic death of their infant who had whooping cough, asking “why don’t people know, why don’t adults know they need a booster?”

For my family, the beginning of spring had seen us with whooping cough, times four.  The first person to get sick in the family had become the guinea pig.  I consulted Healthdirect Australia which explains early identification and a specific antibiotic that lessens symptoms.

It took three appointments with GPs before we were on the right track to diagnosing whooping cough. By this time my second whooping cough victim was also moving from coughs to night time coughs, gasps and some vomiting. Whooping cough can be difficult to identify unless it is picked up in the first few weeks.

Health authorities advocate best protection is through immunisation. Immunisation may have problems but leads to herd protection.  The Australian government report, Immunisations myths and realities, responds to arguments against vaccination. Whooping cough is still here but immunised people are much less likely to have severe complications.

"babies in a cloud of cotton wool"
Pregnant women are encouraged to get free vaccinations passing on some level of immunity. Also fathers, grandparents and anyone around newborns are encouraged to have boosters. Someone said “It is a bit like wrapping babies in a cloud of “cotton wool”.

Campaigns such as Save the date to vaccinate, Apps to download or printed immunisation schedules are helpful reminders.

Emotionally draining for families

Doctors inform and we benefit from their clinical experience and knowledge of evidence based medicine. This is invaluable. When people get sick under these circumstances there are a lot of intangibles which can be emotionally draining. Where did it come from and who else is affected? For parents who are lacking sleep, asking the right questions can be difficult. I found it helpful to call Healthdirect or NSW Health, Communicable Diseases. The National Centre for Immunisation Research and Surveillance, NCIRS provides consumer resources.

I heard varied medical advice amongst families about diagnosis, nasal or throat swabs, test result waiting times, staying home or not whilst waiting, who should take the antibiotic, be given a booster or stay home if symptom free.

In my neighbourhood, none of the three chemists stocked the antibiotics for children in liquid form. Parents with sick children, trailed about trying to commence the antibiotic as soon as possible.

Adolescents take part in school immunisation programs. Some avoid their injections. Department of Health shares tips for parents about how to make this easier, reducing fear and apprehension. Teens who don’t want to line up in a large hall may find medical practices with experienced nurses and doctors reassuring.

AWCH Child Health Library has a number of useful resources to help prepare yourself and your child for a vaccination:

An end to whooping cough?

In September I wrote, “Its night-time and I hear my children coughing, sometimes in unison, gasping for air and gagging. The oldest didn’t get early diagnosis or antibiotics and the coughing started a month ago.” An end to whooping cough is not in sight but will awareness change its impact?

Jillian Rattray
AWCH librarian
November 2015