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.

An important and exciting project!

My name is Tom Porter, and I am the newly appointed UEA Research Associate working on the ESRC funded project ‘Personal assistance relationships and disabled people: a qualitative study of emotions, ethics and power’. Over the coming months we will use this blog to give you an insight into the work we’re doing – the types of research methods the study employs, the progress being made with data collection and analysis, and eventually, key findings from this study.  

Prior to this project, I was undertaking doctoral studies at Keele University. During this time, my research looked at the ways in which older people living with multiple chronic conditions experience support, assistance and co-operation from friends, family and the wider community. I have also been involved in research which looked at the experience of people living with dementia in residential care, and more recently, a project which explored the role of social support in the lives of older people living with HIV.  Throughout these projects, a common thread has always been the ways in which disabled people and people living with illness work together, assist one another, and co-operate with their wider social networks. It goes without saying that I am keen to extend this academic interest into the domain of personal assistance relationships. More importantly though, I am excited, and determined, to help deliver a project which contributes towards improving personal assistance relationships, and furthers the choice and control disabled people have over their lives.

Having arrived in Norwich just over a week ago, from a personal point of view, the potential and value of this research project is really beginning to hit home! My immediate feelings are those of excitement and enthusiasm. I have been impressed by the fact that disabled people are to be at the core of this project, and I’m really pleased to be working in a research team which share the ideals of self-determination for, and empowerment of, people living with disability. The coming months are going to be extremely busy, and I look forward to keeping you informed about any major developments through this blog.

Tom Porter.

We're ready to go!

The PA Relationships study officially begins on 1 November 2015, and we welcome our researcher, Dr Tom Porter, who has come to us from a PhD at the University of Keele. 

Tom's doctorate was a qualitative study with older people who experience multiple chronic illnesses, exploring their social networks and other community resources.  Previously Tom studied History at University of Hull and Social Research at the University of Warwick.  We are very excited to welcome Tom back to Norwich to begin work on this innovative and important project.

We have not been idle in preparing for Tom's arrival.   Our application for research ethics clearance from the Faculty of Medicine and Health Research Ethics Committee has already been submitted, was discussed in October, and we hope that permission will be speedily negotiated.

During the first few months of the project, we will be ensuring we are up to date on background literature, and fine-tuning our methodology.  We hope to begin data collection early in 2015.

In the coming months, we hope to update this blog with regular posts, explaining the detailed goals of the study, exploring the data collection approaches we are using, and discussing interesting research papers.  We will also introduce members of the team, and the wonderful group of people who we are working with, both in the advisory group and in the disabled people's organisations who are helping us recruit participants to the study.