Using the draw and write technique to facilitate children telling their story Maire Horstman, Principal Lecturer, Lond

1. Using the draw and write technique to facilitate children telling their story Maire Horstman, Principal Lecturer, London South Bank University

2. Background to why technique important… • Commitment to listen to children involve them in decisions • History of identifying important aspects of care from parent’s perspective • Need to balance this, find out what is important from the perspective of children so that the views of the whole family are heard • Rarely asked children, particularly those very young

3. Levels of participation…….. • Child-initiated, shared decisions with adults • Child-initiated and directed • Adult-initiated, shared decisions with children • Consulted and informed • Assigned but not informed • Tokenism • Decoration • Manipulation Hart (1992)

4. Recruiting the children • Inclusion and exclusion criteria: knowing your population • Opt in not opt out • Face to face • Time, not one off process • Talk to the child and observe responses • Talk to the parent • Explain the study and refer to the information leaflets • Permission to approach families

5. Multi-method Participatory Reflexive Adaptable Focused Time consuming Need to be skilled Need carefully planning Based on developing a relationship Can check them out with children and young people Role and influence of the researcher, ask for feedback Principles for data collection…

6. Approaching the children • Forming a relationship • Show you are interested in what they have to say • No right or wrong answers • Account for perceived differences of power • Respect children’s rights • Provide useful and informative feedback

7. 6–12 year olds (n = 17) 1 free drawing task-prompt driven: ‘Think about a child like you who has finished the treatment to make them better. Draw a picture of what that child is doing and thinking’ (prompt used for children at the end of treatment) Researcher writes for the child if necessary Clarification of the contents of the picture with the child Semi-structured interview-researcher takes notes Data collection 6-12 years

8. The procedure • Standardise instructions for all data collectors • Quiet area, with table • Blank paper and pencil • Consider the use of colour pencils and rubber • Inform the child that you will be taking notes so as not to forget what they say

9. The procedure • Prompt question on which the drawing will be based • When drawing finished remind child to write in the think bubble • If the child wishes researcher writes in the think bubble, writing the child’s exact words • Check the content of the picture and clarify content, making detailed notes • Continue with semi-structured interview

10. Data Analysis • Interviews transcribed and typed for analysis • Each data set analysed separately • Coded and grouped into themes (Coffey and Atkinson, 1996) • Analysis carried out by 2 members of research team Coffey, A. and Atkinson, P. (1996)Making Sense of Qualitative Data. Sage, London.

11. Data analysis • Explicit at the start of the research • How far will children be involved • Checking out data at time of data collection • Members check • Reference group • Voice of children and young people must be explicit, use of words, emphasis • Influence of the researcher, mindful of interpretation • Protecting children and young people

12. Themes – 6 to 12 year olds 1)He asked about my animals and looked at my pictures 2) ‘The glitter runs out all the time’ 3) ‘It was all white’ 4) ‘Got to have medicines, don’t like needles, thinking why me?’ 5) ‘Use posher words’ – ask me what I want to know’ 6) ‘I was scared of dying’ 7) ‘The food was horrible, it didn’t taste of anything’

13. ‘He asked about my animals and looked at my pictures’ • Relationships with people • Important that parents are always present • Being alone is ‘scary’ - ‘didn’t like being on my own in a room, it was scary when Mummy had to go’ (girl, 6 years old) - ‘I remember when the nurse left my cubicle and I was on my own…I was frightened’ (girl, 10 years old) • Spoke about missing siblings and friends when in hospital • Older children spoke a lot about the role of nurses and doctors

14. He asked about my animals and looked at my pictures • Liked doctors and nurses to listen to them, to get to know them and to make them feel ‘special’ - ‘I loved Dr. X, he was kind, he came to see me every day and he knew I had all my animals and looked at my pictures. If he couldn’t come himself the person he sent he told to ask me how the animals are’ (girl, 7 years old) • Nurses played a particularly important role, ‘kind’, ‘fun’, ‘helpful’ • Young children wanted nurses to play and spend time with them but often perceived as too busy, important that are reliable - ‘Sometimes they say they play a game and then they don’t come back….promised to come back but I knew when it was 8 o’clock she was not coming back’ (girl, 7 years old)

15. Toys and activities -important as provide distraction and prevent boredom Age appropriate -‘All the toys are baby things’ (boy, 7 years old) -‘When we go to hospital it could be 5 minutes or 5 hours so having something to do is really important, having the right things’ (girl, 10 years old) Always available -‘Keep the video cupboard open it is always shut, the art room with all the stuff in it is always locked, the play person is hardly ever there’ (girl, 6 years old) -‘The lady with the key, she gets the toys out so you have to wait for her’ (boy, 7 years old) ‘The glitter runs out all the time’

16. Want hospital to be bright, colourful, comfortable and non-clinical Older children personalised their space e.g. bringing photos of pets, bed covers Want separate waiting areas and wards for young and older children - ‘The babies are too noisy’ (girl, 10 years old) - ‘They cry a lot and it makes you feel nervous’ (boy, 7 years old) ‘It was all white’ • Privacy important - ‘They knock on the door and then just walk straight in’ (girl, 10 years old)

17. Older children spoke a lot about having treatment and how it made them feel Found having needles worrying and stressful Spoke positively about having a Hickman line Didn’t mind anaesthetic, ‘it’s a dizzy sleep, it is nice’ (male, 7 years old) Waiting for treatment was a huge issue – time consuming and boring, ‘I sit and I bored, waiting, waiting, WAITING, had to wait our turn’ (girl, 6 years old) Limitations on life ‘Got to have medicines, don’t like needles, thinking why me?’

18. ‘Use posher words’ – Ask me what I want to know • Majority of older children wanted to be spoken to and given information directly by hospital staff - ‘They speak to mum first, they should talk to me first’ (boy, 12 years old) - ‘The doctor could speak to me and ask me, I could understand’ (boy, 9 years old) • Want staff to use words they understand and to use ‘posher words’ rather than ‘baby words’ as they got older • Wanted more information about treatment, steroids, side effects and waiting - ‘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’ (boy, 12 years old)

19. Use ‘posher words’ – ask me what I want to know • Older children wanted to be given choices and have the options explained to them - ‘the (nasogastric) tube stopped me eating, they put it in because I didn’t want to eat, it stopped me eating, it tugged my nose and hurt the back of my throat when I swallowed so I stopped eating. It was better when I had it out, I managed, if they had talked to me about it more I would have managed without it’ (boy, 12 years old) • Some children did find information overwhelming – important to find out child’s preferences, - ‘We are all different’ (girl, 10 years old) • Found it difficult to ask questions

20. ‘I was scared of dying’ • Mixture of emotions – happy, sad, fear • Worried about: needles, procedures, whether they would get better, dying and that cancer might come back - ‘I got a really sore mouth and had to go to hospital and I got tonsillitis and I thought after all this, why me? I was worried, it was scary, I thought I would not get better’ (boy, 12 years old) • Waiting heightened anxiety - ‘I don’t like waiting, I get nervous’ (boy, 7 years old) • Helped by hospital staff being sensitive and providing distraction - ‘They talk to you and tell you to think about other things and laugh with you, it helps’ (boy, 12 years old) - ‘X made it easier because she held my hand when I was frightened’ (girl, 7 years old)

21. ‘The food was horrible, it didn’t taste of anything’ • Prefer spicy, strong tasting food • Presentation important • Facilities for parents to cook - ‘I don’t eat anything except what Mummy brings’ (girl, 7 years old) • Cost for families, takeaways - ‘Daddy gets me McDonalds and I eat that’ (girl, 6 years old)

22. Data Collection Issues • Collecting data with sick children – appointments often cancelled, tired easily, steroids, limited attention span • Busy lives, at school, lots of appointments • Need to use variety of methods e.g. Tweenies ‘babyish’ by some children, some young people preferred one to one interviews • Children varied in confidence in talking to researchers • Recruitment – reliant on staff assistance, face to face • Unable to recruit children at diagnosis or receiving palliative care

23. Some findings were new Some findings confirm what was already known, but has been slow to change Some findings add to what we already know The results challenge us tothink about the care we offer and the context in which this takes place Importance of individualising care and taking cues from children and young people Conclusion