Wednesday, 3 December 2014

Ethics and personal assistance

A few days ago, we received the good news that our project had been cleared by the UEA Faculty of Medicine and Health Ethics Review Committee: we are just awaiting the official notification.  As with all research studies, we had to explain what we were going to do, how we were going to ensure informed consent, and how we were going to protect our research participants from harm.

We want to involve people with learning difficulties in this study, so it is particularly important that we ensure our consent procedures are adequate.  We are only going to include people who are capable of giving consent.  We have an Easy Read version of our project information sheet.  We will also read the information to people, to ensure they understand it.  Above all, we want to take the time to ensure that people understand the project, and are happy to take part.   We will not disclose who has taken part or what they have said.   Everything they report will be anonymized before we analyse it and write it up.   The only exception to this absolute confidentiality is where people report abuse: in line with general practice, we would have an obligation to report abuse to the authorities, but we would only do so after discussion with the person involved, and we would preferably support them to report the abuse themselves.

There are several thousand people who receive direct payments in Norfolk, plus those who are supported by Independent Living Alternatives in London, our other recruitment site.  We only need to talk to 30 disabled people and 30 personal assistants, which will be a tiny proportion of the total community.  However, we felt it was very important for ensuring confidentiality and trust that we did not speak to personal assistants who were working for disabled people in the study.  We felt that neither disabled people nor personal assistants would want us asking other people about them.  So we are going to recruit the two groups separately, in different geographical areas.  That way, we hope that people will be open and candid about their experiences.

Of course, the really interesting ethical issues are those that arise in the personal assistance relationship itself.  What roles people take, how people talk to each other, what obligations they feel, these are some of the fascinating questions we hope to explore as the study continues, and in two years time we will be reporting back what we have found about the ethics of personal assistance.

We welcome your feedback, so if you have ideas, suggestions or personal experiences to share, we'd be glad to have your emails: tom.shakespeare@uea.ac.uk or tom.porter@uea.ac.uk will find us.

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