Developing a cognitive care pathway after stroke - UK

You can see from this that our stroke medical 'professionals' have NO fucking clue how to recover your lost 5 cognitive years from your stroke

Obviously the mentors and senior researchers associated with this have no clue either. All because our fucking failures of stroke associations  have not put together a database of all stroke research and protocols that is updated as new research comes in. 

Now is not the time to have a stroke since our stroke medical 'professionals' know nothing about getting to 100% recovery. You better wait at least 50 years before having a stroke.

Developing a cognitive care pathway after stroke - UK

 

A survey of health professionals’ views on current and future practice

Study information

We would like to invite you to take part in our research study. Before you decide, it is important that you understand why the research is being done and what it would involve for you. Please take time to read this information and discuss it with others if you wish. If there is anything that is not clear, or if you would like more information, please ask us. 

1. Why is this research being conducted? 
Cognition refers to how we interpret, store information, and understand the world around us. Many stroke survivors suffer from impairments in their cognition after stroke. This research aims to design a ‘cognitive care pathway’ for stroke, which will improve the way we identify and monitor cognitive impairment after stroke. 

2. Why have I been invited to take part? 
You are currently working as a health professional within stroke services in the UK. We would like to ask you some questions about your current experiences and practices working in stroke services and how things could be improved, with regards to assessing, monitoring, and providing support for post-stroke cognitive impairment. 

3. Do I have to take part? 
No. You can ask questions about the research before deciding whether or not to participate. You are also free to withdraw from the study at any point while you are completing the survey or the interview, although you will not be able to withdraw after you have completed the survey or once your interview recording has been transcribed.  

4. What will happen to me if I take part in the research?
If you are happy to take part in the research, you will be asked to complete a survey. The survey will ask about your: (a) training and expertise in post-stroke cognition and cognitive assessments; (b) communication about post-stroke cognition with stroke survivors and their carers/family members; (c) use of cognitive information in clinical decision-making; and (d) practices after initial cognitive assessment, in terms of follow-up and communication with patients' GP.

There are no right or wrong answers to these questions; we are interested in hearing about your own experiences, thoughts, and opinions. Most of the questions will be tick-box questions but you will have the opportunity to provide more detail, if you would like. The survey should take no more than 30 minutes to complete.

At the end of the survey, you will be asked whether you would be happy to be contacted by the research team to provide more detail about your answers. If you are happy to be contacted, you will be asked to provide an email address and/or phone number. A member of the research team will contact you to organise a session, which will take place over video calling software (e.g., Microsoft Teams) or telephone.

During the session, a member of the research team will ask you some questions about your survey responses to try to develop a more detailed understanding of your experiences, thoughts, and opinions. Again, there are no right or wrong answers to these questions. With your permission, your responses to these questions will be audio recorded so that they can be transcribed by the research team. 

Your responses to all survey and interview questions will be kept completely confidential. We will only share your comments with other members of the research team, and we will make sure that your responses do not contain information that might identify you personally. Your name will be kept separate from any research data. 

5. What are the possible disadvantages and risks in taking part? 
 There are no risks involved in taking part in this research. Your responses to the questions will be kept entirely confidential, and they will not be shared with anyone outside of the research team.

6. Are there any benefits in taking part? 
We cannot promise the study will help you, but it will hopefully help to improve the services available for stroke survivors. 

7. What information will be collected and why is the collection of this information relevant for achieving the research objectives? 
 The information you provide as part of the study is research data. Any research data from which you can be identified (e.g., your name, your address), is known as personal data.

The research data will be stored confidentially. All your responses will be de-identified with a code. This means that the results cannot be linked back to you by a person outside of the research group. These de-identified research data will be stored on password protected computers. 

Identifiable personal data is included in your electronic consent form (name) and on the electronic linkage list (name and contact information). The electronic forms and list will be password protected and stored, separate from the research data, on password protected computers. 

All research data (including consent forms) will be stored for a minimum of 3 years after publication or public release of the work of the research. To comply with the General Data Protection Regulation (GDPR) and the Data Protection Act 2018, your contact details will be deleted after all data is analysed, unless you have agreed to being informed about future research studies that you are eligible for.

Although every reasonable effort will been taken (e.g. only using approved software), confidentiality during online sessions cannot be guaranteed.

8. Will the research be published? Could I be identified from any publications or other research outputs? 
 This project is being undertaken in order to fulfil a DPhil qualification. We plan to disseminate the findings through conference presentations and journal articles. At the end of the project, the anonymised data may be made available in an open science archive for the benefit of society, with your permission. 

9. Who is organising and funding the research? 
 The research is organised by Associate Professor Nele Demeyere at the Department of Experimental Psychology, University of Oxford. The National Institute for Health and Care Research (NIHR) is funding the research. The primary researcher is funded by a studentship from the Economic and Social Research Council (ESRC).

10. Who has reviewed this study? 
 This study has been reviewed by, and received ethics clearance through, a subcommittee of the University of Oxford Central University Research Ethics Committee (Reference number: R83766/RE001).

11. Who do I contact if I have a concern about the study or I wish to complain? 
If you have a concern about any aspect of this study, please contact Georgina Hobden (georgina.hobden@psy.ox.ac.uk) or Nele Demeyere (nele.demeyere@psy.ox.ac.uk), and we will do our best to answer your query. We will acknowledge your concern within 10 working days and give you an indication of how it will be dealt with.

If you remain unhappy or wish to make a formal complaint, please contact the Chair of the Research Ethics Committee at the University of Oxford who will seek to resolve the matter as soon as possible: 

The Chair, Medical Sciences Interdivisional Research Ethics Committee;
Email: ethics@medsci.ox.ac.uk; Address: Research Services, University of Oxford, Boundary Brook House, Churchill Drive, Headington, Oxford OX3 7GB 

12. Data Protection 
The University of Oxford is the data controller with respect to your personal data, and as such will determine how your personal data is used in the study. The University will process your personal data for the purpose of the research outlined above. Research is a task that is performed in the public interest. Further information about your rights with respect to your personal data is available at https://compliance.admin.ox.ac.uk/individual-rights. 

13. Further Information and Contact Details 
If you would like to discuss the research with someone beforehand or if you have questions afterwards, please contact: 

Primary researcher:
Miss Georgina Hobden
Cognitive Neuropsychology Centre
Department of Experimental Psychology
University of Oxford
Oxford, OX1 3UD
Email: georgina.hobden@psy.ox.ac.uk 
Phone: 07505 285 891 

Supervisor: 
Prof Nele Demeyere
Cognitive Neuropsychology Centre
Department of Experimental Psychology
University of Oxford
Oxford, OX1 3UD
Email: nele.demeyere@psy.ox.ac.uk 
Phone: 01865 618 637