Disabled Peoples Independent Living Movement

In 2016 the Glasgow Centre for Inclusive Living (GCIL) celebrated its 20th anniversary. GCIL alongside many other organisations has advocated the rights of disabled people to fully participate in their communities and wider society. Part of that has been, and always will be, about ensuring that disabled people have good support so that they can live as they wish. The project I am currently involved in at the University of Stirling, in partnership with GCIL and Disability Research on Independent Living and Learning (DRILL), wants to find out what works and what doesn’t in terms of good support for disabled people. We also want to know how this benefits disabled people, their families and wider society. For example, does good support that allows disabled people, or indeed carers, to work, volunteer or be politically active, provide a positive return for society in terms of the contribution made by those individuals, and the general improvement in their health and well being, thus reducing the overall cost to society. In order to better understand what good support looks like as mentioned in my previous post, our project is looking for people who use Self-directed Support (SDS) or would like to, and carers, to participate in some focus groups. I know focus groups sounds like a big term but really it’s just a fancy way of saying we want to have a chat with people about their experiences with SDS. If you would like to take part please visit http://goodselfdirectedsupport.org.uk/ If you would like to find out more about SDS please visit http://www.selfdirectedsupportscotland.org.uk/

We hope that through participation in this project, disabled people and carers will feel that they can participate in the development and changing of government policy that affects them, their lives and wider society.

 

 

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what do we need to take into account when carrying out focus groups with disabled people?

looking for focus group participants

What is a focus group?

Focus groups are made up of individuals who have been chosen because they have some factor in common, for example, they all make use of the same service or they all have some demographic factor in common which is being investigated.

Different from everyday group discussions of a wide range of topics, the discussion is guided through a range of specific areas by a leader, or moderator.

The aim is specifically to find out the group’s opinion about a particular issue.

In the past, product marketing was where their common use first emerged, and also in gauging the opinion of the electorate on particular policies.

Savigny (2007), describes their use by the British Labour party.

More recently we have seen their widespread use as a participatory approach to research planning.

Notable here was work by  Bagnoli and Clark (2010), in producing the most appropriate research design.

Focus groups can be used at various stages within the research process and as such are particularly versatile.

Using a focus before a particular research project begins gives an idea of the important , or perhaps a population demographic.

Later they can be used during the research period or to gather feedback afterward.

In fact it may be that their use would be most appropriate in any one, or indeed, all of the previously mentioned phases.

Because they are being seen as a versatile method which generates quick results, producing rich and complex data, relatively cheaply, focus groups are now being seen as a legitimate and important research method in the field of political science.

The group make-up is determined by the research question or questions, and what information the researcher is trying to obtain.

Therefore, if we want to use focus groups in carrying out research with people with disabilities, it is of primary importance to remember that they are, first and foremost people, just like any other group of research participants, before considering what additional issues must be taken into account.

At this point I would want to prepare a detailed plan to cover the entire process right through to data analysis,  follow-up, and de-brief and dissemination.

Selection criteria for the group must be clear, for example do we want a cross-section, or a group made up around one particular type of disability, such as wheelchair users, individuals with sight loss or those with complex needs.

Research experience over decades has shown that being overly prescriptive about the target population results in difficulties in recruitment so perhaps a cross-section is more likely to provide participants.

Specific choices now need to be made with regard to recruitment, that is, exactly where will the members of the group come from?

For example we can approach centres run by disability organisations, centres for independent living, support groups, classes or clubs.

While sometimes the only option, this can bring its own problems in the form of ‘professional participants’ who may in fact be tired of being the ‘go to’ interviewees.

Looking for individuals who don’t reside in supported communities may widen the target audience.

If utilising recruitment material such as information packs these require to be made up and be available in various formats: large print, Braille, audio files etc.

In terms of group size, some sources suggest an ideal number of 6 to 8 individuals, with others suggesting 8 to 12 in the group.

These numbers will need to be reduced if participants have sensory or cognitive disabilities, or if using augmented communication systems for example, as more time is required to complete the process.

I would now also be thinking about recruitment of moderators.

Moderators can usually be found among existing members of staff, but if not, recruited from out-with the university.

Next, I would establish the level of those recruited and arrange for the provision of training as required

 

Once the focus group make-up has been established, how contact will be made with them will be set out, and consideration given to how individuals with specific needs relating to assistance will be catered for, that is, taking into account the presence of assistants and/or proxy respondents.

How participants will make their way to and from the venue for the focus group should be considered and also that their transport can reach the venue.

As the most suitable and convenient means of recording the focus group is via audio or audio/visual recording, permission from participants to record the meeting and permission to carry out the research must be obtained.

It is important that the built environment where the meetings will be held is sufficiently large, and the toilet areas are fully accessible for those in wheelchairs or with restricted mobility.

A hearing loop facility will be required for those using hearing aids, and the area should be sufficiently well lit to aid those who lip read.

If refreshments are available, this area, if separate from the meeting area, requires to be fully accessible too, and dietary requirements noted beforehand.

Some conditions, such as ABI or cognitive disabilities, cause the individual to become tired very quickly when required to concentrate and therefore, if this is the case a rest area should be available where they are able to break from the group.

Situations such as these can be difficult and challenging to manage, however, the comfort and well-being of the participant should be paramount.

Earlier I mentioned proxy respondents, often a personal assistant, who responds on behalf of participants with communication difficulties, and the respondent acts to some degree as a translator.

It is important that what is conveyed is what the disabled person wishes to say, and not the opinion of the proxy respondent.

Some sources suggest that because of this, the use of proxy respondents should be minimised as far as possible in order to obtain the personal experience of the participant.

If proxy respondents are present in the group, establishing a set of rules for them, prior to the meeting, will help to ameliorate any negative impact on data quality.

Sometimes it can be impossible to distinguish between the opinion of the assistant and those of the participant.

The moderator will need to clarify whether what was said is the sole opinion of the participant, or does it include that of the assistant/proxy respondent.

The moderator is in possession of any details relating to the participants and their needs.

The researcher will already have established a ‘questioning route’ and the moderator will have been given this.

Following a set format it should begin with an opening question to encourage a response and break the ice.

This should be simple such as “What is your name?”  followed by another piece of information about the participant such as where they are from.

Next would be an ‘Introduction’ question, perhaps relating to how they found out about the project.

This would be followed by a ‘Transition’ question such as, “Can you say something about your first experience of using self directed support?”

There would follow then, a series of questions known as ‘Key’ questions, relating to their experiences of using self directed support.

Finally, there are ‘Ending’ questions which allow participants to make suggestions about their evaluation of the service and any improvements which they might come up with.

 

 

To conclude then, carrying out focus groups with people with disabilities requires a wide range of considerations.

First and foremost though, these participants are people, and an important part of society who can make a valuable contribution to a body of research.

I am currently a research assistant on To Good Self-Directed Support We’re interested in finding out what you think about your support: what works and what doesn’t. We want to see how it could promote genuine independent living and enable more disabled people’s and carers’ lives to be full of choices, opportunities and participation. We also want to find out how much it benefits families, friends, the community and society when disabled people and carers have the right kind of support.

As part of this we are looking for focus group participants across Scotland. Please look at our website to find out more

 

 

 

 

 

 

Good Self- Directed Support Project Goes Live

Good Self- Directed Support Project Goes LiveGood Self- Directed Support Project Goes LiveGood You may have noticed that I haven’t written a blog for a while, but as I mentioned in my last one, I now work at Stirling University as research assistant to the above project. Today our project website has finally gone live. The project aims to find out what disabled people and carers think of their support, what is important to them and what, if anything, they would do to improve it. As part of our project we are carrying out a number of focus groups with people from around Scotland who use, or would like to use such support. We will also have an online survey going live on the website soon, which aims to look at the benefits of support to disabled people, their families, friends, local community and wider society. The project team and myself would be very grateful if you could share our website link with anyone you think may be interested in participating in, or finding out more about the project.

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PSA 2019 first conference as Dr Russell

A few weeks ago, I attended the Political Studies Association conference for 2019 at Nottingham Trent University. This is the first conference I have attended since the conferment of my PhD which made it feel slightly different, but in a good way. First of all Nottingham Trent is a great location for conferences in respect of the conference facilities and the public transport network, in particular the trams, which are totally accessible even on wheels.
The first item on my agenda was Panel Session 1 (9.30 on the Monday morning!), featuring the Rt Hon Kenneth Clark, QC MP, and Professor Rob Ford, among others. The session was entitled ‘Explaining Brexit: ‘Known Knowns and Unanticipated Consequences’. Once you got your tongue around the title, this panel provided a good lively debate with a great deal of well constructed input from the panel and plenty of food for thought on, if not solutions to, the complexities of the Brexit process.
Having spent the period of my PhD up to my neck in the whole gamut of street level bureaucracy, I was happy to see it is still in good currency, with the present wave of PhD students and indeed the profession as a whole, with a number of papers using this framework to explain a range of policy outcomes, making important contributions to understanding the policy process.
The dinner as ever was a grand affair 🙂 within St Mary’s Church, Nottingham, not quite Bath Abbey (I was there the previous week) but you get the drift. The after dinner speaker, Kamal Ahmed, Editorial Director, BBC News, provided a humorous, thought provoking close to the evening.
This year, post PhD, I took the opportunity to consider something different, with a paper entitled, ‘Disability as Part of the Ministerial and Cabinet Lexicon Since 2000’. With this, I set out to conduct an initial examination of the ways in which disability is discussed within policy documents in Malta, the USA and the devolved UK. The only downside? I had to sit on it until the final day of the conference, post annual dinner of course, but I made it.
As previously, I also returned home with additional baggage collected at the book fayre. There is nothing quite like thumbing through a brand new volume, in the flesh so to speak, before deciding to purchase it. The Amazon experience just does not live up to it.
Finally, about Nottingham. Never having been there before, I can highly recommend it as a city destination for history, food, entertainment and of course shopping.

 

Siabhainn_C_Russell_PSA_2019_Disability_as_part_of_the_ministerial_and_cabinet_lexicon_since_2000

Annual appraisal – Not the enemy.

You know that day when you get the email In your inbox to say it’s time for your annual appraisal or review. Is it just me or do we all get that slightly sick feeling in the pit of our stomach? Anyway I just wanted use this opportunity to say that, again this year, as each year during my PhD, I was reminded that, nerve wracking though annual appraisal can be, it also is a space where those who you work alongside can calculate how best they can support you in improving and expanding your skills, and to move your career in the direction you want it to go. This of course can mean suggesting that you undertake training or putting you in touch with a colleague who has these skills. The process should also afford you the opportunity to re-visit and resurrect skills which you already have, but which, with the passage of time, you have overlooked. So next time, when you get that email, try to look on it as a support and advancement opportunity but hope it’s not a ref year!  And yes I will try very hard to take my own advice.

 

This is a useful link for employers and staff during the appraisal process:

 

https://www.jobs.ac.uk/careers-advice/careers-advice/1349/why-do-we-need-an-appraisal

 

 

The Puzzle of the first post PhD job.

Some 7 years ago when I set out on my PhD journey, I had little idea what the job market would look like. I was however, confident that my colleagues would support me. I had applied for a few jobs by mid October 2018 using a range of websites but had no luck. However in late October, 2018, I received an email from my former supervisor pointing me in the direction of a job at Stirling University. I followed his suggestion and was lucky enough to be offered a position a couple of weeks later. I just wanted to use this blog post to share a couple things that I discovered during this job seeking process.

Employment websites are your friend.

For example:

https://www.jobs.ac.uk

Once you are over that first jump, and you secure an interview, you can move on to these:

1 https://www.jobs.ac.uk/careers-advice/interview-tips/1276/top-5-academic-interview-questions-and-answers

2.http://www.academiccareer.manchester.ac.uk/interviews/academicquestionbank/

3 https://info.lse.ac.uk/current-students/careers/Assets/Documents/PhD/InterviewQuestions.pdf

If you are able to, it is advantageous to find out who might be on the interview panel as everyone has their own specific area of interest.

Get in touch with and speak to anyone you know who already works there about their interview experience.

Put Vodka in your water bottle.

Above all, try to enjoy the experience, interview panels are what YOU make them.

The joys of a good book

Recently, while on my first holiday trip away in quite some time, I read a book which was in no way directly or indirectly related to my PhD thesis. The book in question was ‘If Only They Didn’t Speak English: Notes From Trump’s America,’ by Jon Sopel. Jon’s book is written in a clear and concise manner, covering a wide range of topics in relation to how we in Britain, or indeed further afield, might better understand the American context and perspective. The first chapter entitled anger, looks at how the part of America that felt left behind under Obama and indeed previous administrations might have used a vote for Trump as a form of protest. Sopel goes on to offer a clear discussion of an American perspective on Politics in general, race, religion and oh yes, that much discussed travel ban and not least, gun control. All this is done with the deployment of clear argument and timely use of humour to retain the reader’s attention. This volume, although politically based was a delight to read while recovering from being down the PhD thesis rabbit hole for so long, which incidentally I passed last August. I am now looking forward to a new job and my graduation from Aberdeen on 23rd November, 2018. No more rabbit holes for me!    Here is a link to my thesis

 

 

http://primo.abdn.ac.uk/ABN_VU1:PCFT:abn_digitool_marc238593

I hear it  does a very fine line in insomnia cures!!!

Could Cardiff be the UK’s friendliest city?

I don’t know the answer to that but I love a friendly city and Cardiff is certainly that. Last week I attended the Political Studies Association annual conference over three days at Cardiff City Hall. The event was entitled ‘Politics of Our Times: Asking the Difficult Questions’ Not surprisingly it is fairly plain that we are indeed living in a time replete with difficult and multifaceted questions.
As usual there were a few take-home points for me:
1. A panel entitled ‘Voter Choice in Referendums’ highlighted some very interesting findings on the make-up of particular groups such as the 2016 EU Referendum, for example, Euro-sceptic offspring of Euro-sceptic parents.
2. Another panel focused on the role of evidence entitled ‘Improving Evidence Use in Government: How Can Academics Get their Research Heard?’ giving rise to such questions as: what does it mean? What counts? And how can academics get their research evidence heard by policy makers?’
3. The after dinner speaker at the annual dinner this year was Gary Younge, editor-at-large for the Guardian newspaper and author of ‘Another Day in the Death of America’ (Guardian Faber). His speech was particularly entertaining while still making a serious point – an ideal I am sure we all aspire to each time we present.
4. At the Public Policy and Administration Panel: Territorial Politics in the Age of Brexit, considered various questions, for example: Can the UK ‘manage’ Brexit? Are there enough civil servants to see us through the process? Do those civil servants have a real sense the role they must play in the process and how it affects their departments? Professor Janice Morphet of University College London presented some very interesting thoughts in: ‘Autopilot or Risk Mitigation? How Whitehall is Continuing to Deliver Post Brexit EU Policies’ which directly addressed some of the above questions.
5. As ever Professor Sir John Curtice from University of Strathclyde was present offering analysis of how the UK population feels about Brexit and the ongoing negotiations, the UK’s future relationship with the EU, arguing as many others did last week, that there is still a great deal of uncertainty around the long term impact of Brexit.
So I came away with more questions and issues to consider but this is no bad thing.
Finally, my own presentation – ‘Tracing the emergence and changing meaning of ‘resilience’ in public policy discourse in the devolved UK: A Research Design’, which I co-wrote with friend and colleague Dr Emily St. Denny from Stirling University, and I presented on the first day, I think went reasonably well. It was very interesting if not slightly unnerving for me as this was the first time I had presented at PSA on something unrelated to my doctoral thesis.
If you are interested here is the link below
Continue reading

‘Politics in interesting times.’ A euphemism?

Last week, along with many others, I attended the PSA annual conference at Strathclyde University in Glasgow (excellent venue), entitled ‘Politics in Interesting Times.’ Perhaps ‘Bloody Terrifying Times’ might have been closer to the mark if you get my drift.
As usual there were a few take-home points for me:
1. From the Leonard Shapiro lecture presented by Mark Blyth – the global economy might be much more finely balanced than anybody realises!
2. ‘Impact’ – what does it mean? You’re not the only one who’s confused! (Rethinking Impact: Narratives of Research-Policy Relations – panel)
3. Don’t attend the dinner reception hungry because the speaker might be on before you eat. This can have a knock-on effect because you will have been plied with sparkling wine at the pre-dinner reception and there will be wine on the table, just to amuse you during the speech!
4. Should ‘Brexit’ actually be ‘NIBrexit’? Where does Northern Ireland fit in? It’s more complicated than you think. (Making Sense of the EU Referendum? – plenary)
5. Can the UK ‘manage’ Brexit? Are there enough civil servants to see us through the process? (Perspectives on Brexit – plenary)
6. Mental health – the role the police play in assisting those affected in obtaining emergency support. Are there sufficient resources available to provide appropriate places of safety and how long can the status quo continue? (Governance and Government in a Changing UK – panel)
As you see, I came away with more questions than answers but is this not a good thing.
Finally, about my own panel – I presented ‘Transition Policy for Young people with Disabilities: Low Attention Produces High Variation and Low Accountability’ on the first day and I think it went reasonably well. If you would like to read it here is the link: Russell at PSA 2017 04042017Russell at PSA 2017 04042017

Advantages of the HEA Fellowship path

When I first became a postgraduate student, it was clear to me that the learning environment was different and that I was going to have to enhance my professional profile over and above my research project. This Continuous Professional Development (CPD) can be achieved in various ways and one of the paths I chose was to participate in the Higher Education Academy (HEA) programme leading to Associate Fellowship of the Academy.
The Academy sets out a series of descriptors, each relating to the various levels of Fellowship achievable within the scheme. To hold Associate Fellow status it is necessary to meet the skills and competency levels covered in the first Descriptor (D1). This presents 6 areas of competency each of which requires the production of supporting evidence in the form of an account of the individual’s professional practice. This has then to be supported by two references from supervisors or other suitably qualified colleagues. Recording relevant activities and writing up, in my case, extended over a year, however it is possible to complete the process within about 6 months.
The accreditation gained as a result is recognised by many further education establishments, and is often something which is sought by them as proof of ability in the teaching environment.
While this was an additional challenge on top of a heavy research workload, I am not in any doubt that it was a worthwhile investment of my time. For details see

https://www.heacademy.ac.uk/recognition-accreditation/fellowships/become-associate-fellow-hea