Abstract
Introduction: Proton Beam Therapy (PBT) is often described as an advanced mode of radiotherapy. Whilst PBT offers an equivalent chance of cure to conventional radiotherapy, it is said to offer a theoretical reduction in long term side effects. NHS patients have had access to PBT since 2008 and approximately 65% of the 1144 approved referrals have been for paediatric cases. Yet, there is little research on how parents in these paediatric cases perceive their child’s PBT and the information sources they encounter. Methods: This is a qualitative inquiry informed by in-depth interviews carried out with 27 parents of children treated with PBT. Results: Parents primarily frame PBT as a form of radiation but one which is better than alternatives. Whilst medical professionals do play a role, wider sources of information – such as other families and the internet – are important to both initial decision-making and treatment/recovery experiences. Conclusion: Parents are faced with the challenge of a ‘fragmented expertise’ which comes with the ‘novelty’ of the radiation therapy, the ‘rare’ nature of the tumours and the remote location of clinical specialists. Implications for Practice: This article will prove useful for practitioners dealing with parents and care givers of children undergoing proton therapy, and is especially valuable and timely for practitioners based in the newly installed proton centres in the UK. Two high energy proton centres are expected to become fully operational in the UK by the end of 2020. Understanding parents’ experiences and perspectives can help avoid undue anxiety and lead to service improvements and overall satisfaction.