Please note, there is a link below to an information video with the same information if you prefer an audio-visual information guide.
Title: Improving the Transition between Home and Hospital for people with Dementia: A Survey
You are being invited to take part in a study on the experience of hospital admission for people living with dementia and the people who support them. This survey focuses specifically on the communication which takes place between people with dementia, their families, and healthcare staff during a hospital admission. Whether or not you participate is entirely your choice. If you do not want to participate no action is needed, you can simply ignore this request. There are no consequences for declining and you do not have to give a reason.
This participant information sheet will help you decide if you would like to take part. It explains why we are doing the study, what your participation will involve, what the benefits or potential risks to you may be, and what will happen after the study is done. Please feel free to talk to other people about the study including family, friends or a trusted healthcare professional if you would like before deciding about taking part.
What is the purpose of this research: The purpose of this study is to better understand the experience of individuals with dementia and family carers when they visit A&E departments or are admitted to hospital. Previous research has shown us that individuals with dementia and their caregivers can find this experience stressful and challenging. Our hope is that by improving our understanding of the challenges you face, we will be able to improve the process to make it better for those who are admitted to hospital in future.
Who can take part: If you are person living with dementia and you have visited an Accident and Emergency (A&E) or Minor Injuries Unit (MIU) department or been admitted to hospital in England within the last two years we are interested in hearing about your experience. We are also interested in your experience if you are the carer or supporter of someone with dementia who has visited an A&E or MIU department or been admitted to hospital in England within the last two years.
What will my participation involve? This survey will ask you about your experience of attending the A&E or MIU and/or being admitted to hospital. There are a mix of questions, some of which will ask you to rate certain elements of the experience on an agreement scale and others which give you the option of writing a short free text response. The survey should not take more than 30 minutes to complete. You will have the option to close and re-open the survey if you need a break. If you choose to take part in this study, your completion and submission of the survey will be taken as a sign of your consent to participating in this research.
What are the possible risks? There are no physical risks in participating in this survey. However, we realize that reflecting on an experience of hospital care can be upsetting for some people. While we have tried our best to ensure the content is appropriate, some people may feel upset when they complete the survey. If you find that responding to the survey is upsetting for you, please feel free to leave the survey incomplete and end your participation. If after completing this survey, you feel you need to speak to someone about the care that was received in hospital, please contact the PALS department at the Hospital you attended, or contact your local Alzheimer's Society for support.
What happens after the study? The data collected in this study will form part of my doctoral project and will be published as part of my thesis. The data which is collected in this phase of research will be used to develop interview plans which explore in more detail the issues which you raise in this survey. The data collected from this survey will be stored securely in line with UK data protection laws. If you are interested in receiving a copy of the results please contact Courtney Shaw and she will ensure you receive a summary of the results.
Lead investigator: Courtney Shaw
Contact e-mail: C.J.Shaw@Bradford.ac.uk
Contact Number: 07399 839 904
Meet the researcher: http://www.bradford.ac.uk/research/faculties/health-studies/research-students/current-students/courtney-shaw/
Information Video: https://youtu.be/VqWxzWPWezM