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The views and opinions expressed in our blog series are those of the authors and are not necessarily supported by CareSearch, Flinders University and/or the Australian Government Department of Health.
National Carers Week provides us all with an opportunity to stop and think about the care that is needed by palliative care patients and that is given by carers to someone with a life limiting illness. Anyone, at any time, can find themselves responsible for the wellbeing of a partner, family member or friend at the end of their life. Most Australians who know they are going to die spend most of the last year of their life in the community – in their own home, in residential aged care or living with family or friends. This would not be possible without the willingness of people to take on a caring role.
Carers will need different information needs over this time. Much of this will be provided by the doctors and nurses who are providing care. However, the ready availability of health information on the web has also meant that patients, family and carers are looking for information online. Very large numbers of Internet users conduct health searches, even if they do so infrequently. On a typical day around 6% of internet users look for health or medical information. Research suggests that around half of those who recently conducted searches did so on behalf of someone else — a spouse, child, friend, or other loved one and many reported that what they found influenced their health approach. The web is therefore a very important resource for carers.
But we know that finding something online is not the same as finding something trustworthy and useful. A few years ago when I was doing my PhD, I carried out a series of studies about searching for information online. I looked at how users constructed searches to look for palliative care topics and then I looked at what would be retrieved by these searches. These studies showed that people generally create basic searches that can retrieve large numbers of items many of which are not relevant resources. Another study showed that web users often didn’t feel confident in being able to assess the quality of what they found on the web.
Some basic skills can help carers feel more confident in knowing what resources to trust and which to perhaps treat with caution. First, check who has written the content. The About Us page will generally give details on the author or organisation responsible for the site. Next, check when it was written. Many websites will have information on when a page was last updated. You want to make sure it has been checked within the last few years as treatments can change. Be aware who funds the site. Check that advertisements are clearly labelled as advertisements or sponsor notices.
There are several agencies that actually check the quality of health websites. Displaying an accrediting body’s logo such as healthdirect or HONcode is a good indicator of a website’s approach to quality. healthdirect is a free service supported by the governments of Australia which links consumers to quality appraised health sites. The Health On the Net Foundation is an international group that provides HONcode certification following an assessment of the website practices against transparent quality processes.
Understanding the needs and capabilities of intended users is an important part of creating resources that are useful and trustworthy. CareSearch has developed quality processes to ensure that pages make use of the palliative care research and evidence and are written by health professionals with relevant expertise. We comply with health direct and HONcode requirements. People providing care to someone who is seriously ill or dying need to be able to find information and resources that are easy to find, easy to read as well as accurate and current.
You can find many pages for carers in the Patients, Carers and Families section of the CareSearch website. We have included in this section a set of pages called Finding Out More that explains how we use research, how to check if information is trustworthy and where you can find good information sources. A new CareSearch infographic also describes how to find trustworthy information on the web.
Dr Jennifer Tieman, CareSearch Director, Associate Professor, Discipline Palliative and Supportive Services
This blog forms part of a series of blogs to recognise Carers Week and the important role carers play in the community.
The CareSearch website provides trustworthy, evidence based information that helps carers manage a loved one's terminal illness at home. You can find it at www.caresearch.com.au.