Study Information
Assessment of ARBD Service Availability
Addictions Research Group, University of South Wales
https://health.research.southwales.ac.uk/about-us/addictions-research/
1.Study Title
Assessment of ARBD service availability
2.Invitation paragraph
The addictions research group at the university of south Wales would like to invite you take part in their research study investigating the current availability of services and support for individuals with confirmed or suspected Alcohol Related Brain Damage (ARBD). In order to take part it’s important that you understand what this will involve, how your information will be used, and that you are provided avenues, and time, to explore any queries you might have.
Please take time to read this information clearly; this will ensure that when you consent to the study, you are informed appropriately.
This research study will take place entirely online via a electronic survey system, you are not obliged in any way to participate.
3.What is the purpose of the study?
The purpose of this study is to gain a broad understanding of the breadth of service provision currently available in the UK for individuals with ARBD. Currently, assessment, diagnosis and support for individuals with ARBD is severely limited. This is, in part, secondary to a lack of awareness and understanding of the condition by healthcare professionals and policy makers. By reviewing the current services available within the UK for ARBD we aim to improve sign-posting and onward referrals and demonstrate change, service delivery and health outcome improvements following awareness raising and additional service evaluation exercises.
4.Why have I been invited?
You may have been identified because you work in a relevant health care sector. For example, addiction, alcohol care teams, psychology and psychiatry services, rehabilitation settings or third sector support services. We are recruiting healthcare professionals, as experts in their relevant geographical and professional area, at various stages of their career and irrespective of their role within a multidisciplinary team.
5.Do I have to take part?
You are not obliged to take part in this survey, it is up to you to decide if you wish to participate based on the information you are provided with by us. There is also the opportunity to gather more information or ask questions if there are things you would like clarified.
If you are willing to take part, the following page will ask you to confirm that you consent to this process. You are free to withdraw at any time without giving a reason.
6.What will happen to me if I take part and what will I have to do?
If you opt to take part, the following page will ask you to confirm your consent to the study procedure.
You will then be directed to a series of pages where the online survey will be presented.
This will be in the form a number of questions with a variety of response options including: free text boxes were you can describe things in a sentence, single yes/no responses, multiple choice questions and scaled (strongly agree > strongly disagree, for example) responses.
The questions are not a test, or an assessment. Any information you provide will be useful. There will be no feedback or marking provided.
Once you have answered the questions, you be provided information about where you get more information should you like to any further reading.
There will be no follow-up procedures.
7.Expenses and payments
There will be no payment or incentivisation as part of the participation or recruitment process.
8.What are the possible disadvantages and risks of taking part?
There are no anticipated risks or disadvantages to taking part in this study. However, If any information suggestive of illegal, unprofessional activity which can either directly or indirectly result in harm to an individual is declared by you, we are bound to report this to the appropriate authorities.
9.What are the possible benefits of taking part?
The information you provide is unlikely to benefit you directly, however your data will be directly contributing to increasing our understanding of ARBD and how individuals with the condition may access much needed support.
10.What if there is a problem?
If at any time during or after your participation in our study you have concerns or any complaints, then you may contact the lead researchers: Prof Bev John (bev.john@southwales.ac.uk) or Prof Gareth Roderique-Davies (gareth.rdavies@southwales.ac.uk)
If you remain unhappy and wish to complain formally, you can do this through the University of South Wales’ Research Governance Office, Mr Jonathan Sinfield, who can be contacted at 01443 484518 or by emailing jonathan.sinfield@southwales.ac.uk.
11.Data Protection Privacy Notice
The data controller for this project will be the University of South Wales. The University’s Data Protection Officer provides oversight of university activities involving the processing of personal data. The University of South Wales Data Protection Officer can be contacted at dataprotection@southwales.ac.uk.
Your personal data will be processed for the purposes outlined in this information Sheet. Standard ethical procedures will involve you providing your consent to participate in this study by completing the consent form that has been provided to you.
However, the legal basis on which this task is being performed is public interest, approved by the Faculty Research Ethics Committee or University Ethics Sub group.
If you are concerned about how your personal data is being processed, please Contact the Data Protection Officer at dataprotection@southwales.ac.uk.
Details of how the University manages your personal data are described in our privacy notice: Privacy Notices and Use of Personal Information | University of South Wales
Details of your individual rights are available on the ICO website at: Your data matters | ICO
12.Will my taking part in the study be kept confidential?
All the information obtained from the research will be strictly anonymous.
Any study data, including that identified as confidential, will be anonymised by participant identification number, password protected and access will be restricted to the immediate members of the study team.
Your name will not be recorded other than on the consent form. The consent forms will be archived separately from the other study materials.
Your name will not be noted during the survey; if any identifiable information is recorded during the survey, no part of this will be involved in the data dissemination exercises.
It will not be possible to identify individual contributions or contributors. Info will be kept anonymised from the support service as well.
Cumulative anonymised data will be collated into a Main Record File held securely at USW (in backed up networked study files) in agreement with local Data Storage policies. Data will be stored for a minimum of 10 years. Where data intended to change policy is generated, this will be discussed internally, and sought to be stored permanently.
13.What will happen if I do not carry on with the study?
You are free to end the study at any time without having to give a reason. This can be at any point during completion of the survey by closing down the browser - leaving the study survey site before hitting submit will terminate any data inputted thus far. However once you submit your response at the end you will no longer be able to withdraw due to the automated data anonymisation process.
14.What will happen to the results of the research study?
The data provided will be catalogued and analysed by the research team at the university of south Wales. This will be used for preparation and publication of research articles in peer-reviewed scientific journals and for dissemination on our ARBD knowledge sharing website.
15.Who is organising or sponsoring the research?
The Addictions Research Group at the University of South Wales is completing the research. We have a keen interest in alcohol and addiction related harms and health improvement techniques.
16.Further information and contact details:
If you would like more information regarding this study, then please contact the team leads:
Professor Gareth Roderique-Davies (gareth.rdavies@southwales.ac.uk)
Professor Bev John (bev.john@southwales.ac.uk)
If you would like to file a complaint, please contact jonathan.sinfield@southwales.ac.uk. Further information regarding the Addictions Research Group is available here: