Caring, compassion and support: How the lived experiences of a working carer brings data research to life
Elizabeth Nelson and Ann Marie O’Neill of ADRC Northern Ireland discuss the importance of involving those with lived experience of caring in administrative data research which aims to benefit them.
Data professionals often evangelise about the power of data to transform the world around us, knowing that widespread use of data to build evidence to inform policy can illuminate new answers to some of the world’s trickiest and most entrenched problems.
Data, however, is not a substitute for the lived experience of people. It can tell us how big, how deep, how widespread or prevalent a problem is, its shape and contours across a population, but it can’t tell us about the suffering, struggle, or triumph behind each of those data points.
To see the entire journey, we need the stories behind the data. We need real people - experts by experience (EBEs) - to help us understand the full depth of the data and put flesh on its bones.
This is why the work of ADRC NI, part of ADR Northern Ireland, centres around EBEs and their support organisations: from the development of projects, to the analysis of data, to shaping the way it’s presented to the world, we know that data is only as powerful as it is because it represents and illuminates real life. Our research becomes more authoritative when it is endorsed and expounded upon by those with lived experience.
Caring through Covid
During our fourth policy symposium on 3 March 2021, entitled ‘Working and caring through Covid: How the pandemic has affected carers’ and workers’ mental health’, we were privileged to hear from Ann Marie O’Neill, a working mother and carer who had been supported by charity CarersNI. She began by taking us through some research CarersNI had conducted looking at the numbers of carers in Northern Ireland, their experiences and their needs, and how these had changed and expanded due to Covid.
According to their figures, 600 people a day are becoming carers. 38% of total carers feeluncomfortable talking about it at work and 23% say they don’t get enough support for their caring from their employer, making it clear that this is a societal problem on a large-scale.
But the most impactful part of the presentation, and arguably the entire seminar, was when Ann Marie shared her personal experiences. One of the fundamental problems, she said, is that people so often don’t recognise themselves as carers and think what they do is just part of being a daughter, a sister, a mother, a friend. This mindset drives home the gendered nature of caring, with women taking on caring roles on average 10 years earlier than men, according to data from CarersNI.
Prior to the birth of her son with a rare, life-limiting genetic condition, Ann Marie had a successful career. Her son’s condition required round the clock care, so Ann Marie left work to be a full-time carer. After three years of caring for her son, she decided she wanted to go back to work.
“When I said I wanted to work again after those three years away, I was told it couldn’t be done, there were no support services available to my family. I was literally laughed at by the health and social services professionals who should have been helping me to find a way to return to employment.” Ann Marie told us.
Pre-Covid, there were struggles: juggling work, caring and parenting while looking after her own mental health. Ann Marie felt a pressure to constantly prove her value to her employer, whilst acknowledging that her career development was significantly limited due to her caring responsibilities. During the Covid-19 pandemic, unfortunately, Ann Marie’s employers have not been supportive or understanding of the complexities of her situation.
“Covid changed everything,” Ann Marie told the audience. “I can't even begin to explain. Overnight, our world and our support network were turned upside down. No care package, no respite, my mum couldn't help anymore. I was home-schooling, working, caring.
“I requested to be furloughed from my job and they refused. I was left in a position where I honestly didn't know how we would pay our bills. My mental health hit a real low point.
“My employer chose not to help me.”
Ann Marie is lucky to have found a new employer that is fully supportive of her needs as a carer. Flexible working arrangements should be the norm for every employer, she argued, and, alongside empathy, foster loyalty towards employers.
Compassion, she said, goes a long way.
Numbers alone don’t illustrate the immense strain placed on carers during the Covid-19 pandemic in the same way as hearing a carer speak about her experiences openly and honestly. Placing Ann Marie’s insights alongside data from the width and breadth of a population demonstrates the scope, as well as the day-to-day human toll, of a problem that urgently needs addressing.
If those of us who work in administrative data research seek to positively impact people’s lives with our work – and we do – then we must include the voices of those whose lives make up our datasets at every stage of administrative data research. This is arguably the core of what ‘public benefit’ means.
Find out more about ADR Northern Ireland’s research into social and family determinants of psychological stress in occupational groups.