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Understanding how care practices can enable or prevent mistreatment of disabled adults in residential care

Written by Josephine Sirotkin

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In this latest Blog, CDS PhD student Josephine Sirotkin describes her motivation for undertaking an important research project into the mistreatment and abuse of disabled people in residential care settings. Josephine is supervised by Dr Angharad Beckett and Dr Joanne Greenhalgh.

This is a picture of Josephine with her sister Amy, both smiling and having fun on a swing.

Josephine and her sister Amy

In 2011, the television programme ‘Panorama, undercover care: the abuse exposed’ aired on the BBC. Undercover footage showed care staff being violent towards people with learning disabilities in Winterbourne View hospital, an ‘assessment and treatment unit’ funded by the NHS. Years later, whilst completing my undergraduate degree, the same question kept haunting me: ‘how can someone treat another human being this way?’ And so, I began my research. At the same time, I have also helped to care for my disabled mother and sister. Being an informal carer has given me an insight into the difficulties that can arise with care work and the constraints that people face within the current system. Providing good quality care and support can be difficult, but it is crucial in order to ensure that everyone has the quality of life that they deserve. Fundamentally, this underpins my motivation to undertake my research.

My PhD research, which began at the end of 2017, aims to further develop our understanding about how the mistreatment of disabled adults develops in residential care. The project considers a broad range of mistreatment, which includes (but is not limited to): violence, neglect, denial of choices, inappropriate restraints and seclusion. Through including such a broad range of practices, it is hoped that this research will shine a light on how one form of mistreatment could lead to another. Previous research has indicated that subtle forms of discrimination can lead to more serious forms of mistreatment, such as violence (Rossiter and Rinaldi, 2019).

One of the central aims of this research is to advance our understanding about the ways in which care staff make sense of particular practices, and how this sense-making process could either prevent or enable the development of mistreatment. In other words, this research will explore how particular practices are constructed as ‘acceptable’ or ‘unacceptable.’ It will consider how these understandings and rationales for particular practices could either enable or help to prevent the mistreatment of disabled adults in care. To do this, interviews (and potentially observations – depending on access) with care staff will explore how they manage and negotiate different definitions of ‘good’ and ‘bad’ care. For instance, the interview questions may ask how care staff manage their practices when the disabled person’s definition of ‘good care’ does not align with that of the care providers. Currently, however, I am undertaking documentary analysis, which will help to inform my interviews and observations that will take place later on this year.

I hope that my research will be useful and that it will provide us with information that can help to improve adult care. We have a long way to go, and it will be a difficult battle given the current state of social care, in which chronic underfunding has created a crisis (House of Lords, 2017). But, one thing is for certain, we cannot sit back and let the mistreatment of disabled people continue. It is not only affecting people’s quality of life, but it is causing some to lose their lives prematurely. At least 13% of the deaths reviewed by the Learning Disabilities Mortality Review (LeDeR) could be seen as being caused by mistreatment, as: “the person’s health had been adversely affected by one or more of the following: delays in care or treatment; gaps in service provision; organisational dysfunction; or neglect or abuse” (LeDeR Programme, 2017, p.7). This is unacceptable and we should all be working together to push for change.

References

House of Lords. 2017. The long-term sustainability of the NHS and adult social care. [Online].

London: House of Lords. [Accessed 28 April 2017]. Available from:

https://www.publications.parliament.uk/pa/ld201617/ldselect/ldnhssus/151/151.pdf

LeDeR Programme [The Learning Disabilities Mortality Review Programme]. 2017. Annual

report: December 2017. Bristol: University of Bristol.

Rossiter, K. and Rinaldi, J. 2019. Institutional violence and disability: punishing conditions. Oxon: Routledge.

Author

Josephine Sirotkin

Doctoral Research Student