Leeds Asperger Adults & Leeds ABC Project

Leeds Asperger Adults in conjunction with Leeds ABC have obtained funding from Healthy Leeds Partnership via Leeds Community Foundation, to carry out a relevant piece of research in Leeds.

The purpose of our research project is to highlight the specific and often unrecognised needs associated with supporting and caring for adults with Asperger Syndrome (AS) in the family setting.

Face to face interviews, and/or, telephone conversations, email and questionnaires will form the basis of this study. The findings of the above research exercises will form the basis of a detailed report and presentation which will then be used to promote the experiences and support needs of those caring for adults with AS in Leeds.

The intended targets of the report will be Adult Social Services, Leeds PCT, Leeds Mental Health Trust and also Members of Leeds City Council, involved in the Health & Social Care Board as well as Leeds Carers Centre and CAMHS.

The research will be directed by an independent market research agency, Physis {fie-sis} Research and Consulting. Physis specialises in qualitative research studies and has particular expertise within the field of mental health and experience of working with AS.

If you are a family member or carer of an adult with AS we would greatly appreciate you contacting us so that you can be part of this valuable and potentially influential piece of work.

For more information or to take part in this research project, please contact:

Margaret Marshall (Leeds Asperger Adults)
Email:info@leedsaspergeradults.org.uk
Tel: 0113-2754389 or 0113-2180131
Mobile: 07788138471

Susan McDonagh (Leeds ABC)
Email: info@abcleeds.org.uk
Tel: 0113- 2180131 or 0113-2759269

Adult Participants Needed for an Online Study about Special Interests in Asperger Syndrome or High Functioning Autism

If you are an adult (over the age of 18) who has Asperger syndrome or high functioning autism, we invite you to participate in this study 

Melis Aday and Dr. David Hamilton from the School of Psychology at Deakin University are conducting an online study looking at special interests in adults with Asperger syndrome/ high functioning autism. 

 We are interested in finding out about the types of special interests you might have, and the circumstances under which you tend to pursue them.You are invited to participate in this study even if you do not have a special interest.Also, depression and anxiety are two of the most commonly reported conditions by people with Asperger’s syndrome or high-functioning autism.This study will ask you some questions about your mood and how you deal with stressful situations.We hope that the information we obtain will assist mental health professionals to provide services which are more sensitive to the needs of people with Asperger syndrome or high functioning autism.

As a participant of this study, you will be asked to complete an online questionnaire which will take approximately 30 minutes. Participation is completely voluntary and anonymous. For further information and to access this questionnaire, please click on the website link below:

 http://www.deakin.edu.au/psychology/research/specialinterestsinAS/.

Thank you for your time, and please pass on the link to anyone else you think may be interested in completing it!

Health Experiences Research Group
Dept of Primary Health Care,
University of Oxford, Old Road Campus
Oxford OX3 7LF

Tel : 01865 289328
Fax : 01865 289287
www.healthtalkonline.org
Email : francie.smee@dphpc.ox.ac.uk

My name is Sara Ryan; I am a researcher from Oxford University. I am asking you to take part in research. Before you decide if you want to take part or not, I want to tell you why the research is being done, and what you can expect if you do take part. Please read what I have to say carefully. Talk about it with friends, relatives and your GP if you wish. Ask me if you have any other questions. Please take as much time as you like to decide.

What is the purpose of the study?
The aim of our research programme is to improve understanding of people’s experiences of health and illness, and provide resources to support people living with a wide variety of health conditions, their families, friends and the health professionals involved in their care. We collect video, audio and written interviews, which may be used in several ways:
- to find out what is important to people faced with different health issues
- to contribute to the www.healthtalkonline.org website which is run by the DIPEx charity
- to develop other support and information resources for people
- to train health and social care professionals
- to write research papers
www.healthtalkonline.org is a website that has:
• people's stories of health and illness
• information about tests and treatments,
• details about support groups & other resources (e.g. self-help books)
• a teaching and learning area for health and social care staff.

The idea is that Healthtalkonline will help people to:
• understand & cope with health problems and issues
• know what really matters to people when they are ill or are facing health issues; and
• answer common questions and provide information.

People who are faced with difficult choices (e.g. which tests, interventions or treatment to choose) will be able to go to the Healthtalkonline website to find out how others have made their decisions. Health professionals who want to understand what it is like for people to have an illness or face health choices can also visit the website.

Anyone who has access to the Internet would be able to use Healthtalkonline.

The interviews we collect contribute to the information presented on the site, and extracts from many of them will be used to show what it is like for people facing illness or health issues. The interviews will not be used for profit or commercial gain.

As well as the website, we may use interviews to help create other information and support resources, such as DVDs or short films. These may for example be shown to people by health professionals as part of their care or they may appear on other websites approved by the University of Oxford.

Interviews may also be used to develop training materials for health and social care professionals, so they can learn from people’s experiences and improve the care they provide.

Again, these training materials may be presented on the teaching and learning area of the www.healthtalkonline.org website, on other approved websites, and on DVDs.

All the interviews we collect are included in our analysis for preparing research articles and papers.

Do I have to take part?
No. It is entirely up to you to decide whether or not you want to take part. If you decide to take part, you will be given this information sheet to keep. You will also be asked to sign a ‘consent form’. If you decide to take part, you are still free to stop at any time without giving a reason. No questions will be asked if you stop. Deciding whether or not to take part in the study will not affect the standard of medical care you receive.

What will happen if I take part?
If you complete and send back the enclosed ‘reply slip’, I will contact you to arrange an interview at a time and place that suits you. If this place is not your home, you will be paid for the cost of your travel. I will try to answer any questions you may have about the interview or the Healthtalkonline project.
Before the interview I can show you the Healthtalkonline website on a portable computer. You can see how clips from other people’s interviews look in video, audio and written formats.

What would the interview be like?
I will ask you if you are willing to have the interview video or audio tape recorded. You will be given the ‘consent form’. You only sign this form if you agree to take part in the interview. You will be given a copy of the consent form to keep.
The interview will be a little like a conversation, in which I will help you talk about yourself in your own words. I will ask you to talk about your experiences of Asperger syndrome. I will ask questions about what happened to you, what your thoughts and feelings have been at different stages, how you have got information, what you have done, and what have been the good and bad parts of the experience.

While people sometimes find it helpful to talk about their story to researchers, this research is not the same thing as counselling. However, we can give everyone a list of useful contacts which can be used to get more help if you want.

How long would the interview take?
The time it takes for an interview varies, depending on how much you have to say, but most interviews last 30-45 minutes. If you would prefer, I can interview you on two different occasions. Remember, if you want to stop the interview at any time, you can do so without giving any reason at all.

What if I decide to withdraw after the interview has taken place?
You are free to leave the study at any time. If you decide to leave after an interview has taken place, all video, tapes, transcripts and typing of your interview would be destroyed. If you decide to leave after the website or other audio-visual resources have been finished, we would remove your contribution from all later versions, but we would not be able to destroy existing material, which other people could already have seen or copied.

What would happen after the interview?
I will label the interview tape with a code number and give it to a typist who will type out everything you said in the interview. The typist signs an agreement to keep everything you say in the Interview secret.
The tape and the typed up record (transcript), identified only by the code number, would be kept in a secure place at the Department of Primary Health Care at the University of Oxford.

I will send you a copy of the interview transcript to help you decide whether you want your whole interview to be made available to use for our research, including on Healthtalkonline and other audio-visual resources. A copy of the interview tape can also be provided if requested. You would be asked to read or listen to the interview and consider if there was anything you would like to change or remove, to keep anything secret or hide your identity, or to delete or change some of your interview. We can remove any sections that you do not want us to use. You can take as long as you need to do this. You can also choose how your interview will appear in any resources we produce (see below).

How would the researcher use the interview tape and transcript?
You will be asked to sign a form ‘Further use of my interview’. If you sign this form, you give copyright of the interview to the University of Oxford. It is very important that you take time to think about and discuss the copyright form before you sign it. You will be given a copy of this form to keep.

If you do decide to allow your interview to be used for the study, it would be used along with interviews from between 30 and 50 other people who have experiences of Asperger syndrome. A summary of these interviews would be prepared for the healthtalkonline website. People who use the site would be able to see the summaries of the interviews as well as read extracts from the interviews and view the video clips of people who agree to this kind of use of their interviews. All data use is strictly within the terms of the Data Protection Act (DPA 1998). The study data may be looked at by individuals from the University of Oxford, for the purpose of audit and monitoring.

Can I choose how my interview will appear?
You will have a choice about whether a video, audio or written version of your interview is included. If you want to be anonymous, you will be invited to use an alias for yourself and others and you can keep out of the interview anything which might identify you.

You may wish to discuss this with members of your family, since they might possibly be connected to your appearance on the screen.

If you are recognised on a website or a DVD, this would be a little like appearing on the TV. The material on the website is protected by copyright and people are not allowed to copy or record what they find there, but it is possible that they could. If you have any doubts about how you want the interview to be included, talk to us, or we could find an independent adviser for you to talk to if you prefer.

Who has reviewed the study?
This study was given a favourable ethical opinion for conduct by the Berkshire Research Ethics Committee.

Who is organising and funding the research?
The Health Experiences Research Group is based at the Department of Primary Health Care, University of Oxford. The project for Asperger syndrome is being funded by the Department of Health. This will extend the original autism project funded by The Wellcome Trust.

Contact for further information

 
We hope that this information sheet has told you what you need to know before deciding whether or not to take part. If you have any queries at all about the project or wish to make a complaint please telephone Sara Ryan on 01865 289374 or Sue Ziebland, Research Director of the Health Experiences Research team on 01865 289302.

Notes:
- We are professional researchers and are paid for our work.
- The study has been approved by Berkshire Research Ethics Committee for health research

Given the nature of this study, it is highly unlikely that you will suffer harm by taking part, however if you are harmed by participation in the study, you may have grounds for legal action for compensation against the University of Oxford.


The Healthtalkonline site is run by DIPEx, which is a registered charity number 1087019 and a company limited by guarantee, company number 04178865, whose registered office is at P O Box 428 Witney Oxfordshire OX28 9EU