The Journey of a Paediatric Oncology Inpatient

When research projects are written up and published, the results are usually the key focus. This means that members of the public and other researchers only get to read about the background for the research and the impact of the findings. However, much can be learned from reflecting on the research process itself.

Our project investigated the overall cost of a febrile immunocompromised child’s stay in hospital. These are children at high risk of infection due to primary or secondary immune deficiency. After informed consent, we studied three children, all of whom were cancer patients undergoing chemotherapy and who had been admitted to the Great North Children’s Hospital with fever. In order to investigate the overall cost of their stay, we worked as a team of six to observe the journey of each patient in hospital. We watched from a desk outside each patient’s room and recorded information about every staff member involved in their care: this included who they were, what they did for the patient and how much time they spent with them. In addition to the cost of paying staff, this project also aimed to gain an insight into the emotional and financial costs of the stay in hospital to the three children and their families. As MRes and medical students of varying stages, we were amazed at the effort that goes into making the children’s

stay in hospital happier, and the variety of activities and support that they are offered. Even our supervisors, paediatric consultants Emma Lim and Marieke Emonts, were surprised at some of the experiences had by their own patients. Account of a typical day for a Paediatric Oncology Inpatient The child wakes up with their parent or carer who has been provided with a bed to stay with them on the ward. From this moment, their day is filled with visits from both healthcare professionals and other staff with many important roles. We observed an actress who entertained the children by reading to them individually. She told stories with great enthusiasm, putting on voices for all the different characters. Later, the older children received a visit from the Youth Support Coordinator, who arranged whatever she could to make their stay in hospital happier, for example, a takeaway meal, a social activity, or a specific DVD to watch.

We saw younger patients get a visit from the Play Specialist, who would engage with them and keep them active through play. In addition, the hospital had a teacher who would liaise with the child’s own school to bring their normal schoolwork to their bedside. Because of their treatments, many children are too tired for this, but it gives them the opportunity to keep up with their learning when they can and minimises the impact of their time off school. We also saw visits from the Animations Tutor, who came to teach the teenage patients how to make animations on an iPad, and from volunteers offering creative activities such as pottery making. In the afternoon, a nurse might take the child into the playroom to add to their Beads of Courage. These are a series of beads on strings which represent each patient’s cancer journey. A new bead is added for every stay in hospital, every course of chemotherapy, clinic visit, general act of courage, and so on. Between these activities, patients were visited by doctors, nurses and healthcare also spent a lot of time keeping patient areas clean, regularly changing beds, emptying bins, and cleaning bathrooms. Each patient was also provided with meals prepared in the hospital and served on the ward.

In the evening, other family members would often visit. This filled the ward with noise and life, with patients excited to see their parents, grandparents and boisterous siblings. Once the visitors had left and the children were asleep, some parents met up in an empty bay. Having met each other so many times and shared the experiences of their children’s frequent hospital admissions, they have formed close friendships and a community, and could be heard laughing raucously into the night. Having worked closely with healthcare teams for years in some cases, these parents have become true experts in their child’s condition and care. But their time together is valuable, allowing them to support each other and unwind at the end of another emotionally difficult day. Reflections

Occasionally, as an observer, it is possible to forget that these children are sick. Their days are so busy and filled with activity that there is an overwhelming spirit and life on the ward. When it comes down to it, these are all children: fresh-faced, resilient children, whose main priority is still to play and have fun. However, unfortunately, we also observed children who were too weak to participate in activities. We noticed hospital, they are isolated from their friends and family, meaning that they miss out on social activities and home comforts. Educationally, there may be an impact, as they miss multiple days of school. Luckily, the grades of the children we observed had not been impacted. Yet, some still felt disadvantaged socially when they returned to school, feeling that their friends were growing away from them. Parents also reported their child’s reduced enjoyment of school and missed GCSE exams.

In addition, the parents and wider family of the patient are hugely affected. We were shocked to find out that the average cost to the family per admission exceeded £140 (for a stay of up to a week, but in some cases only a few days). This figure accounts for food and travel only, and ignored the cost of days taken off work and the resulting job insecurity. Aside from the financial aspect, we also realised that admissions can be a huge logistical problem for families. For example, parents who have other children have to consider alternative childcare, with the patient’s siblings often missing out on normal after school activities as a result. As hospital staff are extremely busy, they do not get the opportunity to act as a fly on the wall and truly take in everything that goes on in their ward. Overall, observing the journey of three paediatric inpatients provided a valuable experience for us as students to gain insight into the patients’ perspective. Understanding more about what patients go through is key to becoming a compassionate healthcare professional. Learning more about the roles of different members in the team of staff caring for patients was also interesting. Although investigations, medications and treatments are all an important part of patient care, the small activities and kindnesses are what the patients themselves will remember, what will make a real difference to them during their stay, and potentially even speed up their recovery. When looking at it this way, it is clear why so much effort is put into keeping the children occupied with the wide, and sometimes surprising, range of visitors that we encountered over the course of our research.

This project has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No. 668303.