The way in which cancer caregivers understand and use health information in their role is the topic of a major new research project by Dublin City University (DCU).

The ENHANCE project is being undertaken by psychology researchers and is funded by the Irish Cancer Society. It includes a national survey and it aims to create a more detailed picture of the health literacy of cancer caregivers and then use this information to develop a training programme for carers to improve their ability to understand and use health information.

"Cancer caregivers are a group whose voice has been largely hidden in research, particularly in relation to how they understand and use health information in their role and how using health information relates to the burden of care associated with the caregiving role,” commented Dr Simon Dunne from DCU’s School of Psychology.

He appealed to anyone who provides care to someone with cancer, even if it is on an informal or part-time basis, to complete the survey.

“This will help us to know what we can do to support people in the future in carrying out this important role,” he noted.

Caregivers have a key role in helping people with cancer through their diagnosis, treatment and recovery. This often involves taking on many new responsibilities, such as being involved in decision making, communicating health information and acting as a link between patients and healthcare professionals. 

As a result, their ability to find, understand and use health information is a key skill. For example, if they have a difficulty understanding medical language, this can result in poor communication with healthcare professionals.

A previous international survey found that as many as four in 10 adults in Ireland had limited health literacy and struggled to find and assess health information. Meanwhile, one in five Irish people are not completely confident that they understand the information given to them by their healthcare professional. 

“Caregivers are often overlooked in cancer research despite the important role they play and the many new roles and responsibilities they take on when caring for a loved one with cancer.

“This national survey will help us have a better understanding of caregivers ability to find, understand and use health information which will help us with our bigger goal to design a training programme to improve this ability,” commented Chloe Moore, a lead researcher and Irish Cancer Society research scholar at DCU.

She explained that this training programme is being designed for cancer caregivers, with input from caregivers “at every step of the way”. This national survey is the first step in that programme.

The survey will cover caregivers’ experiences and will also record what they would like to see in a training programme designed to improve their ability to access, understand, evaluate and apply health information. For more information or to take the survey, click here.