A humanistic approach to paediatric radiation therapy – One family's journey

Purpose: To present a patient view of a treatment journey, highlighting the strengths and the weaknesses from that experience and recognising a potential for Advanced Practice on behalf of Radiation Therapists. The patient was aged 7 when diagnosed in December 2007 with an anaplastic ependymona tumour in the occipital lobe and had surgery to effect maximal tumour resection. The pathology of the tumour upon removal indicated that it was a Grade III anaplastic ependymoma some 3 cm across. In early 2008 the patient embarked on radiation therapy receiving 59.4 Gy over 33 treatments. This case was an inaugural patient for a novel intervention which aimed at reducing anxiety and helping the patient to cope with paediatric radiotherapy. The intervention was outstandingly successful and the diversionary activities within the treatment regime undoubtedly added to the effectiveness of the treatment. The patient maintained near normal daily activities missing only the first couple of hours of school each day during the treatment period. The paper will cover this from that patient's perspective and then report on the post treatment impact of that treatment. It will present the patient's view and outcomes in the evolution of the patient management process and improved healthcare. Results: The paper identifies the important role of communication and understanding amongst all members of the team, including the patient. It comments on the need to recognise the full range of options available and the best practice guidelines which could be adopted. Above it touches on the impact the adoption of all of these has on the patient treatment journey. It opens up the question of the appropriate mechanisms of involvement for the patient in this journey and the associated decision making surrounding this involvement, and this paper specifically comments on this. It identifies other professionals' world-wide who are working on elements of this approach. Conclusion: The paper will highlight some significant areas of patient need following the weeks of treatment as the longer term impact and effects of treatment emerged. It focuses on recognition of the patient's place and how best to use multidisciplinary care as a two-way communication tool. It asks the profession to translate what appears to be a practice based outside of core resources into one which is central to effective support for the patient journey. It is a report on the patient feedback, on what is a successful and highly desirable programme and offers further comment on the longer term issues surrounding post treatment events and experience