Improving end of life care and ensuring support is provided for families and carers are among the key themes for cancer nurses who work with young people. The findings are the result of a five-year-long research project carried out by the organisation Teenagers and Young Adults with Cancer and presented to delegates at its conference in Leeds on 6-7 July.
A total of 1,126 cancer patients aged 13-24 were approached at 96 trusts across England and asked to participate in a survey provided by the research group Brightlight.
Founding member and Teenage Cancer Trust nurse consultant at Leeds General Infirmary Sue Morgan was one of 100 nurses and healthcare assistants who attended the conference.
She said: ‘As cancer nurses we know it is important that we listen to young people, but this report has shown just how pivotal that is to our work. One of the key messages I am taking away is from the young people who said they wanted health professionals to be straight and honest with them. If there was no chance of them getting better, they wanted to be told that, rather than constantly being given false hope about possible new treatments or drugs. Their reasoning was that not being honest didn’t give them the proper time to come to terms with their conditions and to plan for ‘a good death.’
Paying more attention
The report also explored the experience of the patients’ families and carers.
Ms Morgan added: ‘Nurses have been doing excellent work developing patient-centred care, but the findings show we need to start paying a little more attention to their family and carers too.
‘They are telling us they need a little more help and support, with everything from financial matters to domestic chores. This is where the nurse needs to draw on the experience and knowledge of their multidisciplinary team to ensure the help they need is identified and offered much earlier than it currently is.’
The project will continue and is planning next to look at how young patients with cancer access social care.
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