Including Children with High support Needs
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Including Children with High support Needs
- 1. 07 February 2014 Including Children with High support Needs -not so difficult after all! ESRC seminar 28.11.13 debby.watson@bris.ac.uk 1
- 2. 07 February 2014 Today we will……. 1. Consider how to realistically and ethically include young people with high support needs 2. Provide examples of ways in which young people with high support needs have been included in research 3. Consider what resources beyond the young person we may need to draw on 2
- 3. 07 February 2014 Children with high support needs • Children who may or may not: • • • • • use speech have health issues use wheelchairs or other aids to move around have a learning difficulty have a combination of the above 3
- 4. 07 February 2014 • • • • • • • • • Happy, chuckles Engaging Likes to be busy Likes going fast Not worried by new situations Loves his iPad Has friends ‘Dances’ Loves balloons, shiny things and music Harry 4 • Oxygen dependent • Cerebral palsy • Hearing and visual impairment • Born at 23 weeks • Epilepsy • No independent mobility • Respiratory arrests
- 5. 07 February 2014 ‘A full time job on top of a full time job’ 5
- 6. 07 February 2014 Interpretation • How do you know that what you think is happening is happening? • Be prepared • Tune in • Consult 6
- 7. 07 February 2014 Consent/assent • • • • Has to be seen as a process Consult with caregivers Method used should be appropriate for child At simplest level may involve looking for adverse reactions – need to get to know child to be able to recognise ‘signs’ 7
- 8. 07 February 2014 Study 1. Working Together? • Discussed what we could realistically find out/what we wanted to know • Met the parents to find out about their child • Brought range of resources along – pens, large sheet of paper, smiley faces, toys • ‘Spent time’ with the children 8
- 9. 07 February 2014 Study 2. Participation in Education (PIE) • Met the children at home • Observed children at school (with two members of Listening Partnership on one occasion) • Asked questions to a small group of children with their supporters and two members of Listening Partnership 9
- 10. 07 February 2014 Study 3. Passport to Play • 32 observation sessions in three different settings: • Home • School • Playful setting 10
- 11. 07 February 2014 Why different methods? Participants Background Knowledge Ethics Methods Research design and topic debby.watson@bris.ac.uk Practical issues 11
- 12. 07 February 2014 What helps? • Literature – to know what’s been done • Other researchers- to know (honestly!) what’s worked • Those who know the child well- to know what’s possible • Theoretical approaches- to know what should be done • Research ethics- to know what’s right • The child- to know how 12
- 13. 07 February 2014 To summarise: • Want to include children with high support needs • Have to be mindful of the demands on families and services • Have to be realistic • The child is more important than a flashy method • Use the individual child as your starting point • Be ethical! • Keep it simple – only need to know basic things 13
- 14. 07 February 2014 Final word from the Listening Partnership: • • • • • • • • • • They’re all individuals All equals Don’t label them Treat them the same as anybody else Know that they have individual needs and understand them Give them the 1:1 they need There are different levels of learning difficulties People don’t always know when they need support Ask if they can use their communication aid All kids need play! 14
Notas del editor
- Many people have said to me – must be so hard doing what you’re doing, so depressing. Some things obviously are hard for families but you can see from this picture how much fun I’ve had in this study! We were in a circle with several children and their mums or dads at a family centre, singing 'the wheels on the bus' and, as the little girl couldn't sit on the floor like the others, she was made the bus driver, given a bus and asked to choose which hat she'd like to wear. She chose (by eye pointing) the one with lots of flowers on it and beamed! It was a really lovely moment. Definitely the upside of doing research!
- Taking quite a broad approach to this definition today as the three studies I’m going to talk about involved slightly different groups of children. The first group were chosen for their dependence on medical technology, the second by their communication and the third and my present study involves children who have profound issues with all of these areas.Firsty, I’d just like to go over a few general point about working with children with high support support needs
- I’d like to introduce another one of the five children in my present study. I’ve changed names and the families have given permission for their photographs to be used. You can see that on either side of the slide Harry is described in very different ways. This is borrowed to some extent from Katherine Runswick-Cole and her article about ‘Reading Rosie’ where she described Rosie from four different perspectives – autism canon, social model, relational model and a socio-cultural reading. I realised that I was getting two very different pictures of the children I was visiting. On the first visit to the families I carried out an informal session where I gained background information about the child. This is what you can see on the right hand side of the slide. I then went back and interviewed the families about their child’s playfulness and these are some of the comments that arose out of the discussion and later observations. I think you really need the right hand side information, but need to try to keep the left hand side at the forefront! This little boy was born at 23 weeks and, significantly, was in hospital for the first two years of his life. As I’ve got to know him, a real character emerges of a child who loves to interact with others, has definite preferences and is really good at drawing people to him. I’ve shown you this because one of my main messages today will be that you get what you ask for – if you ask about problems, see problems, then you will come away with problems!
- Another message will be about context and I found this really useful. As researchers, we’re just one tiny part of very busy lives and we should always be respectful of that. In my present study I’ve lost count of the number of times I’ve had appointments cancelled due to the ill health of the children but it’s over 15. rather than be irritated by this, I try to think of this mum’s mindmap of everything she has to deal with for her son – and this doesn’t include her job and all the usual household tasks! Also meant that I altered my research plan – had intended to do 9 observations sessions with each child but after 7, for two reasons, I stopped – the parents indicated in quite subtle ways that they had had enough and alos I had enough data so it would have been unethical, I think to carry on collecting data I didn’t need.
- Example of misinterpretation and how I have tried to prevent that happening again. Will depend to some extent on what your previous experience is.
- These are general points but I’ll say a bit more about the consent process for each of the three studies that I’ll be describing next.
- Only talking about the work with the children in each study, each one has also involved a lot of other work with families and professionals.18 children aged 2-15. 25 families.Used a topic guide with large sheets of parer and either I or the child would write down or draw things. Adults that helped them at school, what they liked, important people, etc. also showed them ‘smiley faces’. Very simple sheet. Found out important things - made a real differnce to them if professionals tried to get to know them, lot of negative things about being in hospital, friendships, etc.
- 11 children. Observed when children were included in decisions. Had done some piloting and worked with LP. Having LP at group session made huge difference.
- For study 1 – the main focus of the research was about multi-agency working with children with complex health care needs– not a topic that children with complex needs could really get engaged with and comment on, even if they had speech. We thought though, that it would be unethical to exclude them as they were what the research was about. Consequently, although all these areas were considered, if I’m honest, practical issues and the research design meant that we didn’t consider what we were going to do with the children or even if we could include them until the study was quite far on. I’m not being hard on ourselves as many researchers wouldn’t even have attempted to consult with the children, but I do think that we didn’t leave ourselves enough time to get to know the children well enough to engage very successfully. Design meant we only had a few days in each area.In study 2 – we did put the children more centrally and we knew we wanted to involve them from the start but I think defining the group was difficult. The 12 children ranged from children who were cognitively quite able, but who used communication aids to communicate, to children who could speak, but who, for whatever reason, generally chose not to, to children who had PMLD. Meant that each child was approached differently. This is where I do think that the critical realist model of disability described by Tom Shakespeare is really useful because you can’t just think of a method and assume it will work with a ‘group’ of children. You really need to know about and consider impairments, especially sensory and communication issues. Observation was fairly unproblematic, but the groups session actually wouldn’t have worked well if I hadn’t had the young disabled people from the Listening Partnership with me because they went right off script and just asked the children things that they could answer, like what’s your favourite colour? This put them and their supporters at ease and we went on to get some useful data. Skin of my teeth! So I would say the research design was OK, but my background knowledge and my knowledge of the participants could have been better.Study 3 – this was a group for whom the choice of methods I would say was entirely led by their impairments. Realistically, with children who have no speech, in most cases very little movement, have sensory impairments and are cognitively very limited I would say the only route open is observation. It also seemed to be the only ethical choice as the only alternative would have been to get to know the children very well and then perhaps carry out some sort of intervention with them. I felt strongly that it would be wrong to be yet another person coming in and out of their lives. Also, the focus of my study was an important influence as I needed to see the children in their natural settings, behaving how they would usually behave.
- Not in any hierarchical order but really I would say that starting from the actual child rather than your idea of what the child might be like and considering what it is ethical to attempt is fundamental. Obviously, you have to know what you want to find out as well!