Multiple Sclerosis Related Surveys

Barts & The London School Of Medicine and Dentistry are carrying out a survey into birth factors and MS via a survey.

If you would like to participate you can answer the survey here - https://www.surveymonkey.com/s/VHGZYZ8

Should you have any material which you wish to share or if you wish to discuss this research further with me before making any possible contribution I can be contacted at: Ruthbasten@btinternet.com or by calling 07712 589871

All the very best,

Ruth.

Study Title: “Patient? Client? Service User? How people with physical disabilities  like to be addressed by occupational therapists.”

What is the purpose of this study?

This study aims to find out what opinions exist about the language and terminology occupational therapists use to describe the people that they provide a service to and for. The study intends to determine if there is a preference and why.

The study also aims to find out if age, gender, ethnicity or type of disability has any influence on the preference of terminology.
In addition, this study will constitute the thesis/dissertation for Bsc Occupational Therapy of the researcher.

Why have I been chosen for this study?

You have been chosen for this study as you are a member of an organisation for people with a physical disability.

Are there any criteria for participants?

Yes. You need to be over the age of 18 and have a physical disability.

Do I have to take part?

No, participation is voluntary. You are not under any obligation to fill in this survey. You do not have to give a reason if you choose not to take part. You make take a look at the survey before deciding whether to fill it in.
You may end you participation at anytime, however once the survey has been returned it will not be possible to withdraw from the study. This is because your anonymity is protected; there are no names on the returned survey.

What are the possible disadvantages or risks of taking part?

The survey will take up a little of you time to fill in. In thinking about your disability and the contact you may have had with an occupational therapist, you may be reminded of difficult times you have experienced. There is a possibility of this causing some emotional distress. Please take a look at the survey questions – You do not have to take part.

If you do experience emotional distress when completing the questionnaire, you may wish to seek some emotional support. You can access information about this kind of support through your own GP, local Social Services or Citizens Advice Bureau. Alternatively, you may wish to contact one of the following help lines –

Life Line –   0808 808 8000
Samaritans -  08457 90 90 90
Support Line - 020 8554 9004
NHS Direct -  0845 4647

What are the possible benefits of taking part in the study?

Although there are no personal benefits to taking part in this study, you will be helping the occupational therapy profession develop a deeper understanding of how terminology is perceived by the individuals it is describing. In addition, identifying trends in preference may lead to a change in the language that is used by occupational therapists.

What if something goes wrong?

This study consists of a survey. There is no experimental aspect. There is no risk of harm to participants

Will my taking part in this study be kept confidential?

The survey is anonymous, it does not ask for your name or address. All of the information that is on paper will be kept in a locked filing cabinet and any information that is stored on a computer or computer disk will be protected by a password.

The information will be kept for the duration of the study and until the final report has been marked by the university and returned to the researcher. The research material will then be destroyed by shredding paper documents and deleting computer files.

The final written report will collate all of the data and discuss it in general terms. Individual quotations may be used to illustrate findings; this will be done in such a way, as not to identify the person who wrote them on their survey.

What will happen to the results of the research study?

Individual surveys remain confidential. The result will be analysed in terms of statistics and themes. These will be written up in a report which is submitted to the University for marking. The results will also be presented to the researchers peer group.

The final report may be submitted for publication in a relevant occupational therapy journal.

The results of the study will also be fed back to the organisation of which you are a member.

Who is organising and funding the research?

The researcher is conducting and funding this study on an individual basis.

Who has reviewed the study?

Coventry University. The study has also been approved as being ethically sound.

Consent?

Your consent to participate in this study will be assumed by you returning the completed survey. If you do consent – do not fill in the survey.

Who should I contact for further information or to comment on the study?

Researcher:   Emma Banks 
   07816916879
    emmyb64@hotmail.com

Research Supervisor: Annette Roebuck
    Department of Occupational Therapy
    Charles Ward Building
    Coventry University
    Priory Street
    Coventry
    CV1 5FB
    01785 353766
    Annette.roebuck@staffs.ac.uk

I am a student at Bournemouth University and I am currently creating a documentary on the medicinal use of cannabis, and, in particular, Sativex for
my final project for my multi-media journalism degree.

I was looking to talk to MSers regarding their experiences with Sativex, those who have found it hard to obtain Sativex, etc.

Any help people can give me would be very much appreciated, I have a month to gather information for the film project

I am looking forward to hearing from you.

Thanks

Shelley Martin

Tel: 07850956421

Email: f9073185@bournemouth.ac.uk

Margo Milne
The Open University

Who am I?

My name is Margo Milne. I am studying for a PhD at the Open University in Milton Keynes. I am physically disabled – I have multiple sclerosis.

What is my research about?

I am researching physically disabled people’s attitudes to end-of-life issues like assisted suicide. I want to find out whether people’s experience of disability affects their attitudes – for instance whether they were born with a disability or became disabled, or whether their disability is stable or progressive. I also want to find out whether things like age, sex, ethnicity etc are more or less important in forming people’s attitudes than their experience of disability.

How am I going to do the research?

I have already carried out focus groups with disabled and able-bodied people to discuss these issues. I now want to ask people with four different disabilities to take part in a survey so I can compare the results from the different groups using statistical techniques.
My methods have been very carefully designed to have as little potential for distress as possible, in what is clearly a potentially upsetting subject. The research design has been approved by the Open University Human Participants and Materials Research Ethics Committee.

What will happen to the results?

I will use the results in my PhD thesis, and possibly also at conferences, in journals and book chapters. I will provide summaries of the results to everyone who participates, and to all organisations that have helped me find participants. All data will be anonymous – no participant will be able to be identified from the results. I hope that the results will help healthcare practitioners provide more sensitive and individually tailored support to people with disabilities who are facing these kinds of decisions.

What am I asking you to do?

I am asking for your help in contacting people who might be willing to complete the survey for my research. Could you put information I would provide on your website, or an article in your newsletter or e-newsletter, explaining about my research and giving contact details if people would be interested in taking part?

My contact details
Margo Milne
Faculty of Health and Social Care
The Open University
Walton Hall
Milton Keynes
MK7 6AA
m.j.milne@open.ac.uk
07831 167885

Psychology research study with MS patients - we'd greatly appreciate your help

I am a researcher at the University of Southern California. I am currently conducting a short survey about how people think about and cope with illness. It is hoped the results of this study will improve understanding of how people deal with illness and assist the medical profession in improving their support of future patients. I am especially interested in having people with multiple sclerosis take part in the study.

People who have already taken part in the study have reported the study to be interesting. Typically, people have mentioned that the study encouraged them to think about their illness and that this reflective thinking was helpful to them.

If you wish to learn more about this study *, which takes about 20 minutes to complete, please click on the link at the bottom of this email.

Everyone who takes part in the study will be entered in a lottery; the winner of this lottery will receive a check for $200. We are expecting about 500 people to complete the study. Therefore your chances of winning the prize are 1/500.

Link to study: http://www.psychexperiment.net/616/box.php

If you know other people with multiple sclerosis who may like to take part please pass on this link to them.

*To take part in the study you must be at least 18 years old.

Mathew Curtis

Their goal is to estimate the prevalence and understand the nature of constipation in people who have Spinal Cord Injured, Multiple Sclerosis and Spina Bifida.

All interviews take 15min over the phone and are strictly confidential and no names will be attached to the study. An honorarium  of 25GBP will be paid directly to each individual participant or it can be made as a donation to charity of your choice.

Anyone who is interested should contact Karine Azzoug via her e-mail k.azzoug@martecgroup.de or can call her at 0049-6980903820.

The Martec Group are looking to invite 20 more people to participate. Those who have already participated through other organizations have been very delighted to express their opinions as well as receive an honorarium for
their time.

My name is Oren Horev, I am a researcher in ReD Associates, an ethnographic research & innovation consultancy, based in Copenhagen.

We are currently initiating a Multiple Sclerosis survey that you might be interested to learn about. I hope that you will find this appeal relevant and respectful.

The study aims at learning what is the impact of bladder disfunction on the lives of people suffering from either Spinal Cord Injury, Spina Bifida or Multiple Sclerosis. It will take place in the UK and Germany in the month of July.

We are interested in conducting interviews with MS affected people and their carers/personal helpers that suffer from bladder disfunction.

In the interviews we would very much like to follow the normal life of those participating. They are not expected to prepare, change or rearrange anything in relation to that day of the intreview.

Rather it would be perfect if everything could be held as normal as possible so the researcher can get a sense of the overall atmosphere as well as an insight into the real issues, tasks, challenges and aspirations in their lives.

The method we use comes from the discipline of anthropology. It is called participant observation and it is based on open-ended interviews.

We don’t use a prebuilt fully structured interview template because we wish to focus on the participant agenda and let him lead to the topics that are most relevant for him.

We will also conduct similar interviews with nurses, male-nurses and doctors working with MS affected people.

Through participating in this study, allowing us to reveal what emotional, psychological and social issues remain unarticulated, and to prioritise your values and concerns, you could help us to improve and innovate solutions around bladder disfunction, that better answer unmet needs of spinally injured people and MS affected people.

Obviously, I would be very grateful if some of you had the time and motivation to participate, but I would highly appreciate any help getting in contact with other MS affected people and their carers who might be interested.

We will of course compensate those participating for their time and efforts.

If you have any further questions or require more information, please do not hesitate to contact me through email: oho@redassociates.dk or phone +45 3333 7044.

Kinds regards from Copenhagen,

Oren Horev

Georgia says: "I have created an online survey comprising of two questionnaires (the General Health Questionnaire, and the Self-Esteem Scale), and seven open questions. I understand that carers are faced with multiple responsibilities so I have tried to make this survey as easy and quick as possible. The survey should not take more than 20min to complete. I have received ethics approval from the I-WHO Ethics Committee and I can assure you that all ethical guidelines will be strictly adhered to in order to protect the privacy and to minimize distress of participants."

If you are a young carer, and feel able to participate in the questionnaire please Click Here to take survey.