What are ‘acceptable’ and ‘unacceptable’ practices within care? Are ‘unacceptable’ practices necessarily mistreatment? And if not, where do we draw the line between ‘unacceptable’ practices and mistreatment?
The research project ‘Understanding how care practices can enable or prevent mistreatment of disabled adults in residential care’ is being undertaken by ESRC-funded PhD researcher, Josephine Sirotkin. The research seeks to further our understanding about the mistreatment of people labelled as having ‘cognitive impairments’ in residential care. It considers a broad range of practices under the term mistreatment, including violence and neglect. Yet, it also considers those practices that may not always be considered to be mistreatment, such as inappropriate restraints, seclusion and the denial of choices.
If you have seen practices that you consider to be mistreatment, or if you have seen practices that made you feel uncomfortable, or that you deemed unacceptable, then please consider participating in this project.
You can get involved by filling out this online form (please see answers to FAQs below):
This project has been funded by the Economic and Social Research Council. It has received ethical approval from the University of Leeds on 08/07/2019, reference: AREA 18-171.
Read more about the project, and researcher, here: https://disability-studies.leeds.ac.uk/carepracticesabuse/
Please click here for an easy-read version: FAQs easy read
How long will it take for me to fill out the online form?
It should take less than five minutes, although it depends on how much detail you wish to provide. The online form is one short page.
Who should fill out the form?
Please fill out this online form if you have ever witnessed practices that made you feel uncomfortable (or that you consider to be mistreatment) within residential care for disabled adults labelled as having ‘cognitive impairments’ (in other words: dementia, learning disabilities, brain injuries, and any other condition that is seen to effect brain functioning). Residential care includes: Assessment and Treatment Units, nursing homes, residential homes, and supported living with multiple people living together.
This project would like to hear about anything that you felt uncomfortable witnessing or doing, and any practices that you have witnessed that you felt were ‘unacceptable’ or you would class as mistreatment.
What do you mean by mistreatment?
Mistreatment includes a wide-range of practices that you may call abuse or neglect. It can include violence, inappropriate restraints (physical and chemical), seclusion, coercion, humiliation, denial of personhood, denial of choices, and more.
I don’t know if I have witnessed mistreatment, can I still take part?
Yes, please still fill in the online form. If there is anything in particular you are unsure about, you can put this on the form.
I have seen care practices that have made me feel uncomfortable, but I wouldn’t say that it is mistreatment. Should I still fill out the form?
Yes please. This research is very interested in hearing about these experiences as well as practices that are commonly seen as mistreatment or abuse.
Will I be contacted again, after I have filled out the online form?
You may be contacted again to be asked to participate in an interview. You do not have to participate. If you choose to take part in the interview, you will be provided further information and you are able to withdraw at any time with no consequences.
You may not be contacted again. This is because I may not be able to interview everyone who fills out the form, due to time constraints.
When might I expect to hear back?
You may not hear back, however, it is anticipated that invitations for interviews will be sent out at the end of August and/or early September.
What will happen to the information I provide on the online form?
Your contact details will only be viewed by the primary researcher (Josephine Sirotkin) and will only be used to contact you in relation to this study. You can request for this data to be deleted at any time. Other information that you provide will be anonymised and may be used to inform Josephine’s PhD thesis. This means that your name, any identifying information (e.g. location), and names of services will be removed.
There will be no remedial action based on the information you provide. This means that this information will not be used to generate formal complaints and this online form should not be used as a way to seek justice.
I am worried about being contacted by you, as I would not want people (or my employers) to find out I have participated in this research
Emails will never disclose what you have stated within the online form.
Please state on your online form if you are particularly worried about this. Josephine can contact you by phone, if you prefer. Or, an email can be sent discretely, i.e. without naming the research project.
Why are you focusing on mistreatment towards people labelled as having ‘cognitive impairments’?
The research focuses on this, as the mistreatment towards people labelled as having ‘cognitive impairments’ (difference in brain functioning) appears to have specific qualities, such as the mistreatment occurring for longer periods of time as they are often not believed when they say what has happened to them. The label of ‘cognitive impairment’ is considered critically by the researcher.
I have a question or concern that is not answered here
Please contact Josephine Sirotkin, the primary researcher on this project. Her email is firstname.lastname@example.org