The ‘Listening to Children and Young People with Cancer’ project was set up through the support of Macmillan Cancer Relief to explore the perceptions of children and young people with cancer regarding their care and support needs.  Thirty-eight children and young people aged 4 to 19 years took part in the project.  They were either still on treatment (20), at the end of treatment (9) or had finished treatment 6 to 18 months ago (9).  Creative, age appropriate, data collection techniques were used to enable the children and young people to talk about their experiences and give their views of care.  The play specialist on the research team used ‘Tweenie’ dolls or other soft toys as puppets to talk with the 4 and 5 year old children.  The use of familiar objects was thought useful to help the researcher to enter the world of the child.  The ‘draw and write technique’ was used with those 6 to 12 years old.  This involved prompting the child to do a drawing at the start of the interview, followed by questions about the child’s experiences.  The wording of the prompt and the subsequent questions was adapted according to the stage of the cancer journey the child was at.  An activities day was carried out with young people 13 to 15 years old, during which the young people interviewed each other about their experiences and took part in a focus group.  Other young people were interviewed individually. The data were analysed and themes pulled out; some of the key points from the findings are presented here.

Regarding the hospital environment, the children and young people wanted the hospital to be bright, colourful, comfortable and non clinical. The older children said that they would like separate areas for young children as they found hearing them crying distressing and noisy.  Toys, the playroom and activities were clearly essential features of hospital across the age groups as they provided distraction and prevented boredom, ‘when we go to hospital it could be five minutes or five hours so having something to do is really important, having the right things’ (Kate, 10 years old).  The drawing below by Holly, 9 years old, shows a child who is ‘happy because she has things to do’.  The young children spoke a lot about the toys and playrooms at the hospitals they had been to and also about activities they had enjoyed with play staff.  It was important that toys and activities were easily accessible and always available.  Some children spoke about staying in bed all day having treatment and when they were able to get out of bed the playroom was locked and the play staff had gone home.  It was important that there were age appropriate toys and activities available, many of the older children felt that everything was aimed at young children. The young people spoke about being ‘pestered’ to take part in activities and said that when they were unwell they often preferred their own space and just watch a film or read, ‘I wasn’t into all this like let’s do gluing and sticking and stuff’ (Louise, 17 years old). 

The role of family, friends and hospital staff featured prominently in the children and young people’s stories. These people provided support and helped them through the ‘hard times’. It was important to all of the children and the majority of the young people that their parents were able to stay with them, ‘didn’t like being on my own in a room, it was scary when Mummy had to go’ (Lisa, 6 years old).  Many of the children spoke about missing their siblings whilst they were in hospital.  The young people spoke about support from their friends, however it was difficult to keep in touch with them during hospital admissions.  Nurses were described as ‘kind’, ‘fun’ and ‘helpful’ and played a particularly important role.  The participants appreciated it when staff took the time to get to know them and ‘chatted’ about their life outside hospital.  For the young people, nurses chatting to them helped them to pass the time whilst they were in hospital and some said that they looked forward to seeing the nurses.  Many of the children wanted the nurses to play with them but they were perceived as often being too busy.  It was important that nurses were reliable, a few children spoke about nurses promising to come back to see them and later realising that they had gone home. 

The following account from Jack, a 12 year old boy who had acute lymphoblastic leukaemia and finished his treatment 4 months ago, demonstrates the importance of information and how some children want to be spoken to directly by hospital staff.   Lack of information made many of the children interviewed worry that the changes they were experiencing would be permanent.

It was really important to Jack that hospital staff spoke to him directly and in an age appropriate manner, ‘I had to have a scan but they didn’t tell me what it would be like.  Nurses and doctors don’t tell you enough, they treat children different.  When Mum is sick and has to go to the doctors they treat her different…They use posher words but they are words I can understand, they could use them with me’.  Jack wished he had been given more information about treatment and side effects, ‘They tell you the medicine will make you better but they don’t tell you how it works’.  He thought it was particularly important that children are given information about steroids, ‘I couldn’t stop eating.  I was worried I was always going to eat like that….I got really fat and I was worried I would stay like that.  I think they should warn people about that.’  Jack spoke about having treatment and his worries, ‘I got a really sore mouth and had to go to hospital and I got tonsillitis and I was worried and I thought after all this, why me?  I was worried, it was scary, I thought I would not get better.’  

The older children and young people described what it was like having treatment and how it made them feel, ‘it made me feel so awful and sick and just like the kind of ill that I just didn’t even think anyone could feel…I never felt so disgusting in my whole life’ (Louise, 17 years old).  Needles were something which lots of the children found very stressful and worried about having.  Many of the children and young people spoke about how the cancer and treatment placed limitations upon their lives.  Being in hospital and attached to a drip took away their freedom and they often felt too tired and sick to do things, ‘sometimes I don’t feel like playing anything’ (Amy, 4 years old). 

This study provides an insight into children and young people’s experiences of cancer care services and highlights the aspects of care that are important to them.  Many of the findings have implications for the development of services, which are child-oriented and meet the needs of children and young people with cancer. 

Dr. Faith Gibson  (Institute of Child Health and Great Ormond Street Hospital for Children, London, UK)

Professor Alison Richardson   (Kings College London, UK)

Susie Hey   (Institute of Child Health, London, UK.)

Maire Horstman   (London South Bank University, London, UK)

Christine O’Leary   (Great Ormond Street Hospital for Children, London, UK)

Acknowledgements

We would like to thank the following: Great Ormond Street Hospital for Children NHS Trust, The Royal Marsden Hospital NHS Trust, University College London Hospitals and the children, young people and their families who took part in this project.