Websites sharing patient experiences expand
21 May 10
Three new sections of Healthtalkonline.org and Youthhealthtalk.org, the award-winning websites of patient experiences based on Oxford University research, are now available.
The online resources allow people with different health conditions and illnesses share and benefit from the experiences of others who have been in the same position.
The new sections are aimed at those diagnosed with leukaemia, young people with weight problems, and women who have had a particular type of abnormal cells picked up during cervical screening.
Each section is based on interviews with a wide range of different people, and includes video and audio clips of people discussing their experiences and various issues that confronted them, in order to help others in the same situation.
The websites aim to help those immediately affected by the health condition or a new diagnosis, their family and friends, and also help doctors, nurses and other professionals understand what people are going through.
The material is based on qualitative research carried out by the Health Experiences Research Group at the University of Oxford.
The material on leukaemia now available at www.healthtalkonline.org offers an honest insight into the experience of being diagnosed and treated for the disease. Video, audio and written material from interviews with 46 people cover the whole range of feelings – shock, confusion, disruption and relief – experienced by those with leukaemia.
The interviews revealed that prior to diagnosis, most sufferers had thought leukaemia was a single illness that only affected children. In fact, leukaemia is the collective name for a spectrum of blood cancers with dramatically different forms of treatment. The website illustrates the contrasting experiences of patients with different types of leukaemia.
One patient Marilyn, 62, said: ‘I think I expected to have to be rushed into hospital and have treatment straight away. It wasn’t like that at all … [The leukaemia] was something that would progress but it wouldn’t necessarily kill me.’
Kerry, aged 32, had a different experience: ‘They told me I’d be in hospital for six months and if I’m lucky I might come out for the odd night. So my kids went to live with my mum – I think that was the most devastating experience to me.’
The new section on the website www.youthhealthtalk.org presents what a diverse group of young people with weight problems have to say about their lifestyles, their families, friends, and what influences their behaviour. The stories featured come from interviews with 36 young people with weight issues – most of them overweight or obese.
Young people in the UK are amongst the heaviest in Europe. One in three 10/11 year olds is overweight or obese representing a serious health problem.
The young people interviewed by the Oxford researchers did seem to understand that being overweight was not good for their health. While most understood the importance of taking regular exercise to improve health and not just to lose weight, few had been given any detailed advice about exactly what they needed to do to help them improve fitness.
The interviews also revealed that young people and their parents often felt unsure whether they should talk to their GP about the weight problem. Community-based weight management programmes seemed to help young people lose weight by providing support and building up confidence and self-esteem.
In the third new resource of patient experiences, www.healthtalkonline.org has added a section on cervical intra-epithelial neoplasia (CIN3) – the clinical term describing severely abnormal but non-invasive cells that can be picked up by cervical screening and safely treated. It features the experiences of 39 women, most of whom had never heard of CIN3 before diagnosis and most were unaware that cervical screening could detect abnormal changes which could be treated and cancer prevented.
Cervical screening is not a test for cancer but a method of preventing it by detecting and treating early abnormalities which if left, could lead to cancer in a woman’s cervix. About one in 20 women receives a test result that shows some abnormality, most of which go back to normal on their own. However, in one in 100 tests, abnormal cells are found in the cervix that could, if left untreated, could go on to develop into cervical cancer. Where treatment is needed, it can usually be carried out without a general anaesthetic and is no more painful than having a screening test.
