Research in practice

What hope means for families of children with rare diseases in clinical trials

Children taking part in clinical trials are often described as being given ‘hope’. Is this useful as a coping mechanism or does give rise to  misconceptions and possibly false hope?
The word ‘Hope’ written in sand on a beach. Picture: iStock

Children taking part in clinical trials are often described as being given ‘hope’. Is this useful as a coping mechanism or does give rise to misconceptions and possibly false hope?

In this extended abstract, Northumbria University graduate tutor and paediatric nurse Claire Camara outlines the main findings from a literature review

Background

Due to the extended survival of children and young people that modern medicine has enabled ( Moreira et al 2013 , Ferro et al 2014 ) there is a rising prevalence of life-limiting conditions in the UK (

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