Take part in research projects

LIFEPSYCHOL 2009  

LIFEPSYCHOL 2009 is a new event for healthcare professionals being run on 7-8 July 2009.  This conference is being run with the support of a number of patient and professional organisations and is designed to raise awareness of the need for psychological and social support for people with long term and life threatening conditions. 
 
One of the presentations at the conference is titled ‘What does Quality of Life mean to patients?’. Therefore, we thought it would be important to actually ask people with epilepsy some questions on this topic, the answer to which we would like to present at the conference. We appreciate that there are only seven weeks prior to the conference but hopefully this will be sufficient time to generate useful information that can be reported.

The short questionnaire is purposefully designed to ask questions that are not specific to people with epilepsy. The survey is electronic and accessible from the following links:
 
http://www.surveymonkey.com/s.aspx?sm=pv5sMhBORF7oEXC_2faUwdlg_3d_3d
 
We will be very pleased to provide Epilepsy Action with the results of this survey that are relevant to people with epilepsy. 

Acceptance and quality of life in adult patients with epilepsy

Eliza Avgoula is a postgraduate student in London Metropolitan University studying for an MSc in health psychology. As part of her dissertation project she is looking at the relationship between acceptance and quality of life in epilepsy.

It has been suggested that quality of life is likely to be strongly influenced by the degree patients accept their medical condition or illness. In order to study how living with epilepsy can affect a person’s life, Eliza is looking for adults with epilepsy who would be willing to complete two short questionnaires.

Both questionnaires are in Word files so after completing them you can save a copy at your computer and send it (attached) directly to Eliza by email to avgoulae@gmail.com or eliza_t186@hotmail.com. After you have returned your questionnaires, a follow-up sheet will be directly sent to you by email.

Please take a look at the information sheet and questionnaires below: link for the information sheet; acceptance questionnaire and quality of life questionnaire.

• Information sheet
• Acceptance and action questionnaire
• Quality of life questionaire

Your time is really appreciated! 

Can adults with epilepsy and epilepsy nurse specialists work together to reduce ‘did not attend’ (DNA) rates in primary care nurse-led epilepsy clinics?

Pam Mantri is an epilepsy nurse specialist, working in primary care in Durham.
As part of her MSc in Epilepsy Practice at Leeds Metropolitan University, she is carrying out a study on why adults with epilepsy sometimes do not inform the clinic that they will not be attending their appointment.

Pam is concerned that if people do not attend (DNA) appointments they may not benefit from important healthcare.  She goes on to say that professionals may not understand why people DNA, so she is keen to find out the real reasons from adults with epilepsy themselves.

If these reasons can be understood, then it may be possible to improve services, making sure that people benefit from healthcare in a way that meets their needs.

If you would like to have your say about this important topic, then please complete the survey: Microsoft Word version - PDF version

When you have completed the questionnaire, you should save it to your computer then email it to Pam p.mantri@nhs.net Or you could print it off and send to

FAO: Fiona Almond
FREEPOST RLXY-CAXB-JCCH
Durham Dales PCT
Henson Close
South Church Enterprise Park
Bishop Auckland
Durham
DL14  6WA

If you have any queries, or would like a paper copy of the questionnaire, you can contact Pam on 0191 3826879 or email p.mantri@nhs.net   Alternatively, please contact Margaret Rawnsley on 0113 210 8800 or email research@epilepsy.org.uk

AbilityNet 

AbilityNet is a national charity helping disabled adults and children use computers and the Internet by adapting and adjusting their technology.

As part of this work they ask disabled web users to test websites and give feedback on their experience of using a website. This feedback is then used to help improve the accessibility of the website.

The testing will take place in Central London. However, the tasks can also be carried out at home. AbilityNet pay an hourly fee plus travel expenses to their testing lab for all participants.

It’s a great chance to help remove some of the frustration people with disabilities face when using the web and earn some extra cash!

Potential recruits will need to be regular internet and email users.  AbilityNet can only recruit people who have some physical, sensory, cognitive or literacy difficulty that substantially impacts their computer use.

For further details please send an email to Helen Liptrot (helen.liptrot@abilitynet.org.uk) or call 0800 269545.

The Information Matters Project

Children, young people and their families need high quality information in order to support decisions they make about looking after themselves and staying healthy. However, very little information has been specifically produced for children and their families and very little is known about their information preferences and how information is used.

Researchers at Cardiff University are now looking at what information should be available for children and young people with long-term medical conditions, including epilepsy. They would like to hear the views of parents and children about these important issues.

The research will be carried out in Bath, Bristol, Cardiff, Liverpool and Manchester areas.

If you are a parent of a child or young person with epilepsy and would like to find out how you can be involved in this research, please contact Dr Alison Hughes. You can email Alison at hughesai@cardiff.ac.uk or call 029 2091 7808. 

Talking about medicines

The University of Nottingham are carrying out a study looking at ways in which children can be encouraged to take their medication properly. The study is being led by Professor Rachel Elliott, the Lord Trent Professor of Medicine and Health. Rachel tells us that taking medicines correctly is worse in children, especially adolescents, than in adults. She hopes that the research will find out why this is the case and identify ways to overcome the problem. Rachel would like to hear from parents of children with epilepsy who might be interested in being involved with the research.

The university have an information sheet if you would like to find out more. Alternatively, please contact Natasher Lafond on 0115 9515125 or email Natasher.Lafond@nottingham.ac.uk or Jacky Williams on 0115 9515105, E mail: jacky.williams@nottingham.ac.uk  

Developing an epilepsy-specific questionnaire

SallyAnn Wakeford, a PhD student at the University of Bath, would like to hear from adults with epilepsy who would be willing to complete a questionnaire which investigates how epilepsy affects the way we think and the way we behave.

The purpose of SallyAnn’s research is to develop an epilepsy-specific way of measuring cognitive and behavioural abilities, which are most important to epilepsy. The research aims to raise awareness that people with epilepsy need special consideration with psychological testing. Current tests are not developed especially for those people with epilepsy, and are not appropriate or accurate.

It is hoped that these improvements can be made to all standard psychological tests, to enhance a real understanding of epilepsy. Improved tests will benefit all people with epilepsy, whose abilities will be measured in a more accurate way. It will reduce the chances of a misdiagnosis, and it is hoped that this will improve what treatments are offered to people with epilepsy.

The questionnaire titled "With Epilepsy" is for adult with epilepsy. If you are willing, you are also invited to pass on a second questionnaire, titled "Without Epilepsy"  to family member or friend who is same sex and similar age. However, this is entirely optional and doesn’t affect your opportunity to take part in the research.

People taking part are presented with short statements, and invited to consider whether they agree or disagree. The questionnaire takes about 15 minutes and can be done at home and returned by Freepost to:

SallyAnn Wakeford
Department of Psychology
University of Bath
FREEPOST RRAU-ZELZ-ZEZK
Bath BA2 7AY

Questionnaire online

If you would like any further information you can contact SallyAnn at srw@bath.ac.uk or by telephone on 07961 053633. 

The voice of childhood epilepsy

Are you a parent or carer of a child with epilepsy? If so, would your child be interested in sharing their experience of living with epilepsy?

The National Centre for Young People with Epilepsy is looking for contributions from children to be included in their new booklet, ‘’The voice of childhood epilepsy’’. Your child can write their own piece or have the help of a parent or carers. You should email your child’s story to info@ncype.org.uk or post to:

The Information and Education Service
The NCYPE
St Piers Lane,
Lingfield
Surrey
RH7 6PW

Or, if you would like more information, please contact Gill Gallagher on 01342 831338 or email ggallagher@ncype.org.uk 

Do you have a family history of epilepsy?

If the answer is yes and you would be interested in helping find a genetic cause for familial epilepsy, then at the Wales Epilepsy Research Network would like to hear from you. The research is based in Wales, but families across the UK can take part.

The purpose of the study is to find new genes that cause epilepsy. Senior Clinical Fellow, Dr Ann Johnson, tells us that it is hoped that the findings of the study will eventually benefit not only families with a history of epilepsy, but also individuals with epilepsy more generally.

To take part families must have four or more affected members, or have siblings who have epilepsy.

If you would like more information please contact Ann Johnson on 01792 295070, email j.a.johnston@swansea.ac.uk or Carrie Hammond on 01792 602310, email c.l.hammond@swansea.ac.uk   

Meeting the needs of family members who give care and support to an adult with a long-term neurological condition

As part of the National Service Framework for Long-term (Neurological) Conditions, the Department of Health have commissioned King’s College London to carry out research into the needs of carers.

Dr Diana Jackson is leading the study and would like to hear from people caring for an adult who has developed epilepsy following a brain injury. If you would like to take part, you will be asked to complete a postal questionnaire.

• More details 

Disclaimer
While Epilepsy Action endeavours to take every precaution to ensure that such research projects are bone fide, the inclusion of such requests does not imply that Epilepsy Action endorses the research or recommends people with epilepsy should take part. Anyone who wishes to participate in such projects should satisfy themselves that this will not be prejudicial to their health or well-being. Epilepsy Action cannot be held legally responsible for any negative outcome.