Meeting experts by experience

A recent speaker at the UEA posed a question: ‘What’s the point doing research if it doesn’t change the world?’. Quite right! I thought. This question led me to think about how we make sure academic research really does affect change (however small) in the real-world. 

As researchers, one of the best things we can do is talk to experts by experience – disabled people who employ PAs, and those working in and around personal assistance. This is why we were delighted to accept an invitation from the West of England Centre for Inclusive Living (WECIL) to talk about our research at a recent conference, which explored the benefits and barriers of direct payments and personal assistance.

This one-day conference brought together people from various backgrounds – PA users, PAs, professionals working in health and social care – to share and discuss their experiences of direct payments and personal assistance. Other speakers included Alex Fox, CEO of Shared Lives (an organisation providing alternatives to home care and care homes for disabled adults), and Lindsay Winterton, Care Act lead for Bristol City Council. 

We gave a 40 minute presentation on the topic of PA relationships, which touched on the issues of emotions, ethics and power, and introduced preliminary data from our first tranche of qualitative interviews. 

Feedback from the audience was positive, with several attendees saying that our research questions and preliminary data really resonated with their experiences of personal assistance. But there were also probing questions: why are we not interviewing ‘informal carers’?  How can we be sure that findings from a qualitative study will be reliable? Answering these questions really helped to crystallise the scope, purpose, and potential impact of our research.

The afternoon workshop (which focused on the complexities of personal assistance, the potential role of statutory bodies, and the development of a ‘PA framework’) saw lively and thought provoking discussion. This session was particularly useful as many of the practical issues identified (the PA interview process, the hard work of becoming an employer, adhering to complex welfare and employment regulations) have often been overlooked within academic literature. In fact, the issues raised in these discussions may well inform the development of our interview topic guides, thus shaping the questions we ask and the data we collect.  

And here we come back to the notion of change in the real-world. Speaking to experts by experience helps us to think about the kinds of questions we ought to ask our research participants, how personal and contextual factors might affect participant’s experiences of personal assistance, and how we can translate our research findings into knowledge and materials that really help to produce more effective and rewarding personal assistance relationships. This is, after all, the change we are committed to making. The input of PA users and PAs is essential to achieving this aim; thank you to everyone we met on the day.