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Goal setting for children with neurodisabilities - research

(28 Posts)
DMKAL Mon 17-Mar-14 15:01:25

Hi everyone

I'm new to Mumsnet (but not to the world of disability - I have a son with CP and many accessories smile ) and I've heard you are a feisty bunch who know what you want which is great!!

I'm involved in planning and applying for funding for some research into how goals are set when your child has input from therapy providers. Our thinking is that goals should be set with the family at the heart of all the decision making and parents/children should be told what their goals should be. It's about empowering parents so that the goals which are being worked towards are actually valued and mean something realistic. As a parent of a child who receives input from various services, I appreciate how important this is.

Initially I'd like to speak with parents to find out what is important to them when goals are being set. These conversations can then be used in shaping the research, and if it gets funded, ensure it is meaningful to families and can make a difference.

I'd love to hear from parents who live in the north west - Greater Manchester, Lancs, Merseyside, Cheshire (initially due to timescales for getting this done) who could spare a couple of hours to meet.

If anyone is interested, please pm me and I will send you further details.



zzzzz Mon 17-Mar-14 15:58:49

I think there are some safeguarding issues regarding responding to this, and that it would be good to know who the research is for and what the information is going to be used for. This is a very vulnerable population you are seeking to access.

starfishmummy Mon 17-Mar-14 16:16:04

I agree with zzzzz. I thought all such requests had to go via mnhq?

Upandatem Mon 17-Mar-14 16:25:32

For me I'd want all info to be available electronically so all can collaborate effectively. I cannot deal with any more paperwork and meetings.

DMKAL Mon 17-Mar-14 17:50:58

Agree that anyone using forums need to cautious and my offer to provide further details would allow anyone who is interested to receive all the information prior to any commitment being made.

My apologies if my post seems insincere in any way.

zzzzz Mon 17-Mar-14 17:58:22

There are quite strict guidelines to protect the participants of research projects. There are also rules about doing this sort of thing on MN. There is a special section and you are I think required to pay a fee.

With the greatest respect it isnt lack of sincerity that's the problem. You must see that just because you are on the straight and narrow doesnt mean other less scrupulous people might not use this as a way of finding vulnerable children/families. Your method opens a door for that and I think if you care about children with disabilities safety you should change your approach.

jenkel1979 Mon 17-Mar-14 20:26:21

Hey Diane,

The research sounds really good. I didn't realise you had to go through a certain channel to post those sorts of requests. Easy mistake to make and no harm done. Good luck with it all, hope you get the message out there smile

DMKAL Mon 17-Mar-14 21:03:23

Thanks jenkel1979 �� it will hopefully help a lot of parents to turn situations around so they feel empowered to take the lead.

Zzzzz I think perhaps you misunderstood my original post; I am not asking for research participants. They will be needed once the study has been designed and accepted. More important than that is the shaping of the research, to ensure ALL families of kids with neurodisabilities benefit.

I see where you are coming from but I do feel you have over reacted slightly. As I said when I introduced myself, I am a parent of a child with disabilities and I have to say perhaps your reaction is one of the reasons I am not a regular contributor to Mumsnet discussions.

zzzzz Mon 17-Mar-14 22:32:30

Gosh I'm sorry if you don't post because of me. How awful. sad

I've helped with research studies before and there are usually quite stringent safeguards for even preliminary contact. I think that is a good idea, but the forum is open, if HQ don't mind you posting and people want to be part of it they will. I personally wouldn't without knowing quite a bit more about who you were and what and who the data was for.

I have two children with neurological disabilities and am pretty boring and normal so if you want to represent the entire community I'm sure I wouldn't be the only one with this sort of concern.

RaRaTheNoisyLion Mon 17-Mar-14 22:58:24

Interesting research. In my experience parents are empowered, it is the professionals who aren't. Parents know what needs to happen, they just need the professionals to engage and quit having meetings about meetings with woolly promises and delay.

DMKAL Tue 18-Mar-14 09:15:55

RaRa I completely agree and the second part of your post is often the issue. The way therapists do things too will be looked at.

zzzzz Tue 18-Mar-14 10:02:48

But when you've "looked at" these issues/ideas, what are you going to do with the information?
Where is the money coming from to fund the research?

Goblinchild Tue 18-Mar-14 10:14:02

'Where is the money coming from to fund the research?'

That's the first question I always ask, zzzzz. Because I have yet to find a case where the origin of the funding hasn't impacted on the results, in any area of research. And FWIW, I don't think you over-reacted, I thought your comments were reasoned and measured.
Bit surprised at the response though. confused

DMKAL Tue 18-Mar-14 10:23:53

For anyone who is interested, please see the attached summary, which gives my contact details should you have any questions. It would be great to have parents involved at the outset to ensure the research does what families want and value. If the text is difficult to read, please let me know and I will send a word version over to you.


NiinaK Tue 18-Mar-14 10:58:48

Hi All,

I am the Lead researcher for the programme of work discussed above. Diane is the parent representative, and leads the public and patient involvement ('PPI') activities.

My information can be viewed here:

Information about the programme of work can be viewed in the following two places:

Diane has kindly posted further info about what we are currently doing, and why we are approaching people, above. As you can see from that, we are currently preparing a funding application - and are just broadly scoping out people's views to ensure we make the proposed work as relevant to families as possible. We are not formally collecting data/information and we are not recruiting participants for research - we are just offering families an opportunity to comment on early ideas as they are being developed.

A few people have already expressed views above, thank you for those. At this stage, we are interested in hearing from anyone who wants to and is willing to comment.

We are hoping to hold an open meeting for people to comment on the proposed research ideas - this is likely to be in late March/April. We are also welcoming views from people on forums, by email ( or by phone (see my details above).

We appreciate that some people may not wish to share views; and this is absolutely fine. We are merely offering an opportunity for people to do so - if they wish.

We are doing this because we are committed to designing and applying funding for projects that genuinely address family priorities. However, it is impossible to do so without seeking family's views about what matters first.

Thank you again for your comments to those who have been happy to share views.

RaRaTheNoisyLion Tue 18-Mar-14 11:03:07

I think it looks like a very valuable piece of research. Unfortunately I'm not in your area though but good luck with it. I hope it is approved for funding.

Goblinchild Tue 18-Mar-14 11:06:41
RaRaTheNoisyLion Tue 18-Mar-14 11:06:50

Tbh I think I'm a bit surprised to see service providers seeking what appears to be genuine parent views.

First reaction is always going to be suspicion given the host of bollox-for-consultation stuff that has been going on recently. Sorry about that.

Goblinchild Tue 18-Mar-14 11:07:15
NiinaK Tue 18-Mar-14 11:09:51

Upandatem (all info to be available electronically)

RaRaTheNoisyLion (parents are empowered, it is the professionals who aren't. Parents know what needs to happen, they just need the professionals to engage and quit having meetings about meetings with woolly promises and delay).

Thank you to you both - these are both points that we too believe. It is sometimes hard to convince the funders about these points, and to be able to say in the funding application that these are not just our views but also expressed by parents will make a big difference.

Thank you again for sharing, Niina

ps. for those asking where we are applying to for funding - please see details about the funding call here This is the UK's largest applied health research funder, National Institute for Health Research (NIHR). They have a one-off call for research to support children with long-term conditions; a unique opportunity in this field to do large-scale research with NHS impact.

NiinaK Tue 18-Mar-14 11:13:15

RaRaTheNoisyLion - healthy skepticism is to be applauded! smile

Also - thanks for making the links active - I did not know how to do that.

ps. If funded, the proposed project will be England wide

RaRaTheNoisyLion Tue 18-Mar-14 11:22:04

Okay well my own experience and that of MANY on here is that we are banging our head against brick walls trying to get someone competent to advise us what to do. If we have time to chase appointments, make childcare arrangements for the weekly dragging of our kids halfway across county to attend a clinic session with someone covering someone's maternity leave who 'observes and monitors' and hands over a bad photocopy of some patronising generic suggestions, we could certainly exchange that for someone who meets with us much less frequently, sets targets and data collection system with us and 'monitors' via email, with signposting to further self-help resources.

That would be my dream actually. To hardly see anyone but know what I can do myself and embed it in my parenting.

In fact many of us do do this, but the slow way and without the safeguards of a professional oversight and the opportunity to refine for increased efficacy. And then even when something works beautifully, trying to convince other non-specialist professional impossible to avoid such as teachers and GPs, well without specialist endorsement, forget it.

NiinaK Tue 18-Mar-14 11:35:22

RaRaTheNoisyLion -- wow. That is awesome. Thank you. I really mean it.

[A long thinking silence].

I am not sure what to say. 100% agree with you. I suppose I am just stunned (in a positive sense) as you have just put the argument for the proposed project so well.

A HUGE HUGE thank you - for taking the time to express and summarise your view.

I am now thinking that it would be amazing to attach your views with the funding application... It really is hard to convince the funders that these are real issues - they seem to think that because "family-centred care" is written in policy it actually happens....

I don't want to take advantage of anyone sharing views though. If you were happy for us to include your quote in the funding application, please do let us know.

DMKAL Tue 18-Mar-14 11:36:15

RaRaTNL - As a parent I completely empathise with what you are saying, and that is why the Good Goals work interests me. In discussions, we have already talked about how parents can own the data and update it when goals have been achieved. In fact I see this as not only benefitting NHS services, but (dare I say and very tentatively) in education too where EHC plans are going to be used, and no one will know how and when the plan can be ceased. For me, it is about setting goals for the right reasons - does it enable the child to be independent, learn, play, have fun, make friends. It isn't just about whether it meets a 'clinical' need. And at the end of the day, if any or all of this work can make life less stressful for parents and families then that is fantastic. Thanks for your views/comments.

ouryve Tue 18-Mar-14 12:26:54

Have you run this through any of the NIHR PPI panels, yet, or will that be happening after you make the application for funding?

Carer organisations and local branches of disability charities can often be extremely helpful with this sort of thing, but it is good practice to approach the organisation formally, rather than just wading in and speaking to members directly (which is what you got a ticking off for, here!)

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