Posted by Llinos Jehu, Research Associate with AskFuse, Teesside University
Llinos introducing the blog and speaking about her experience of epilepsy
Happy ‘International Day of Persons with Disabilities’! That day set aside by the United Nations to ‘promote the rights and well-being of persons with disabilities in all spheres of society’.
There’s a lot to be happy about. When I was diagnosed with epilepsy in the 1970’s, the world was a very different place. I got used to being treated as a fire and safety hazard (so not allowed into some buildings or events), a risk (so refused insurance), and a liability (excluded from school trips ‘just in case’). Given all the gloom and doom, it’s amazing that I turned out to be such a boringly average sort of person, never knowingly causing anything to spontaneously combust.
Roseberry Topping has been compared to the Matterhorn in the Swiss-Italian Alps
And generally I am happy living as someone with epilepsy, identifying as a disabled person. But then I attend something like the launch of the NIHR Applied Research Collaboration (ARC) in North East & North Cumbria, and get told that I’m going to die 10 years before everyone else. OK, they didn’t actually say that, they didn’t necessarily mean me. But people living with a disability or long term condition are at risk of premature mortality, and that risk isn’t always linked with their condition. For me, good epilepsy management is dependent on taking medication like clockwork. Seizures don’t stop me from taking my medication, but having to remember to order a repeat prescription just might: not more than 10 working days before I run out, but not less than 8 working days as it takes time to process. Good epilepsy management requires a good standard of physical and mental health: managing the weight-gain that the medication can cause, managing stress and anxiety, getting a good night’s sleep. Most people want to achieve some of the things on that list. Epilepsy doesn’t stop me from travelling with my job or going out to see friends; that’s caused by poor public transport. Unless I actually drop down with a seizure (and there’s no reason that I should), epilepsy won’t stop me from doing a 16 mile hike across the Moors. Barriers are more likely to be caused by people asking me, ‘Are you sure you should? Is it safe? Is it wise?’.
Speaking to Steph Kilinc about her research on the experiences of people living with adult-onset epilepsy
So what would make me happy, and possibly live a bit longer? Good, accessible, affordable public transport for starters. And a text from my pharmacist to say that my meds are ready to collect – after all, they know I’m a responsible person who takes them as instructed. They also know I’m not the sort of person who will stock-pile meds to sell on the internet or feed to my goldfish! The text wouldn’t just make sure I had the meds to take, it would make an enormous contribution to reducing levels of stress and anxiety. It would make me feel that I was viewed as an adult with a range of competing demands on my attention, rather than an old child with nothing else to think about.
Phil and Llinos on how technology helps them to navigate both walks and public transport
What already makes me happy is that I’ve had a life filled with friends who’ve supported and encouraged me. They’ve helped to keep the stress and anxiety levels down, to get the good night’s sleep, to manage the risks and have the adventures. There’s still lots to be unhappy about. Sometimes I’m really, really angry. Hate crime targetting disabled people, increasing levels of inequality: sometimes there can seem little to celebrate. But for this year’s event I’ve walked up Roseberry Topping on a glorious day, accompanied by two great friends: Phil Jeffries who’s a very experienced walker and happens to be partially sighted, and Steph Kilinc, a member of Teesside University’s Behaviour, Health and Resilience Research Group who happens to be a somewhat less experienced walker. We’ve compared Steph’s research findings with our own experiences of living with a disability. Phil’s shown how technology can help someone with a visual impairment to read maps (actually how to interpret maps, he was good at orienteering before his sight loss and there’s only so much technology can achieve). Together we’ve managed to navigate the public transport system and arrived at the same place and at the same time. I’m not stressed, I’m not anxious, I’ll take my meds and have a good night’s sleep. I’ll leave being angry until tomorrow, when I might follow up on those ARC presentations and find out what’s to be done to address that premature mortality risk.
References:
Stephanie Kılınç a,. The experience of living with adult-onset epilepsy, Kilinc S, van Wersch A, Campbell C, Guy A, Epilepsy & Behvious 73 (2017) 189-196
Thomas R & Barnes M, 2010, Life expectancy for people with disabilities NEUROREHABILITATION Volume: 27 Issue: 2 Pages: 201-209
Posted by Llinos Mary Jehu, Research Associate with AskFuse, and Pat Watson, Research Fellow, Teesside University
We all know that. At a time when many of us are returning from holiday (or conference), we can reflect on the risks we took, like driving to the airport or eating sea-food.
So it’s no surprise that participatory action research brings risks. Co-researchers may be exposed to the risks that academics frequently anticipate, such as risks arising from lone-working or the emotional impact of data collection and reflection. There are also risks associated with research being carried out by people who have not been trained to the level of an academic, such as confidentiality, informed consent or interviewing techniques.
I’ve been involved in participatory action research at two universities, as well as within the NHS and local government. I’ve been through university ethics and NHS ethics, jumping through hoops as we’ve recruited and trained co-researchers, often re-submitting so we can finally start collecting and analysing data. I’ve also spent a fair amount of time getting to grips with systems for paying co-researchers expenses and honoraria. It’s amazing how complicated getting agreement to give out some supermarket vouchers can be, as both the ethical risks and financial risks are apparently enormous.
For all these projects, risk was removed, reduced or managed through our training and support systems. The training sessions allowed potential co-researchers to build their understanding of what the research involved, giving them an opportunity to opt-out should they choose. The sessions also built open, trusting relationships which, very occasionally, allowed us to identify and counsel people away from the project and signpost them to other opportunities. These relationships were vital during data collection periods. We may have drunk gallons of coffee and eaten far too much cake, but frequent, informal meetings with co-researchers ensured we kept a handle on what was happening in terms of ethics, finance and lone-working.
Consequently, I was a bit thrown when AskFuse - the responsive research and evaluation service run by Fuse - received a query from Pat Watson at Teesside University. Pat’s been commissioned by Sunderland City Council to carry out a piece of participatory action research involving pregnant mums in the design, development and implementation of a project looking at how expectant mums make decisions on how to feed their babies. The university Ethics committee had asked about insurance for co-researchers, and we had to admit that no one in the AskFuse team had any examples of formal arrangements. I also had a slight concern that, given the risk-averse nature of many large organisations, such a requirement might pose an insurmountable barrier for the research proposal. Undeterred, Pat went on the hunt, with a meandering email trail that eventually reached the University’s Deputy Director of Finance and the Liability Underwriter for the University’s insurers, UMAL. To my absolute surprise and delight, they confirmed ‘that the Teesside University Employer Liability/Public Liability/Public Indemnity covers apply to all University authorised research activity’. If Ethics approve participatory action research, then the co-researchers are insured.
It’s a huge relief that we now have a tick to put in the required box, and we have an example to cite should another researcher be asked the same question. I am really impressed with the approach of the insurance company: as their website states, they ‘never shy away from difficult risks’. However, managing risk in participatory action research requires far more than ticking boxes, regardless of how important these boxes may be. An equally important tool for identifying and managing risk is the strong relationships that successful co-research depends on. These relationships require time and investment, going to where people are and being prepared to share their space. They require trust and respect; possibly not asking people to show you a receipt before you pay their bus fare and not assuming that they’ll use their supermarket voucher to buy cider.
Research tools, data collection and analysis will be different, and often better, when the research process involves or is led by people who share the same standpoint, or even are, the research subjects. Hopefully universities will continue to recognise the benefits of participatory action research, recognise that the relationships it generates are a valuable asset and tool for managing risk, and not shy away from any ‘difficult risks’ it may present.
Image: 'victorian risk assessment cartoon' by John C Bullas BSc MSc PhD MCIHT MIAT via Flickr. Attribution-NonCommercial-NoDerivs 2.0 Generic (CC BY-NC-ND 2.0): https://www.flickr.com/photos/johnbullas/7788230372
