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Working with a long-term illness – does employment status make a difference?

guest blogger27 September 2018

Across the developed world, a growing share of the population suffers from chronic disease such as diabetes, arthritis or heart problems – in the EU, around 45 per cent of those aged 55-64 had such a disease in 2015. And that affects their ability to work: just half of those with chronic illnesses are employed, compared to three quarters of those without. But how do the self-employed cope with such conditions, when compared with those in employment? Maria Fleischmann and colleagues from the RenEWL project find these differences in work status can make a major difference.

We know that when people become chronically ill, changes in their working conditions can help them to continue working. And we also know that good working conditions – being able to control how you use your time and how you do your job, whether you make the decisions and whether you feel valued, for instance – can help all of us to stay in paid work for longer.

And of course, if you become ill you’re more likely to feel the need to take time off or maybe to give up work altogether. We wanted to compare how the employed and the self-employed adjust their working conditions when facing a diagnosis of chronic disease.

Existing research tells us that many older people work for employers, and have to ask for their approval when it comes to making adjustments to their working conditions. The self-employed, meanwhile, are much more able to make their own decisions and tend to feel they have more control over their working lives.

We looked at people’s ability to control their work: physical demands, working hours, psychological demands such as how fast they had to work, and social aspects such as whether they felt valued.

And we had a great source of data for this – the English Longitudinal Study of Ageing (ELSA), which has followed a total of almost 9,000 over-50s since 2002.

From that group we were able to find and study 1389 participants who reported no chronic diseases when they were interviewed in 2004-5 – the second wave of interviews – and who were in work.  We were then able to look at what happened to them before the seventh wave of interviews, in 2013-14.

A little over 40 per cent of our sample were in managerial or professional occupations, a quarter in intermediate occupations, and almost 30 per cent in routine and manual occupations.

After diagnosis

At each interview, respondents were asked whether they had been diagnosed by a doctor with lung disease, asthma, arthritis, cancer, high blood pressure, diabetes or high blood sugar, stroke or heart problems.

During the study period 510 of the 1389 sample members were newly diagnosed with one of those conditions. We were able to look at how they fared at work for four years after that, and we found some striking differences between how the employed and the self-employed seemed to have been treated.

The physical demands of our participants’ jobs were pretty similar before their diagnosis, for instance. But afterwards significant numbers of those who were employed said that those demands had actually increased when they were diagnosed. The self-employed, meanwhile, told us the opposite had happened to them – they reported significantly lower physical demands at work immediately after diagnosis. This effect continued for some time, though it grew less pronounced.

How could that be? We think maybe the increase in physical demands among the employed could be due to perception – similar demands might be perceived as more strenuous by the chronically ill. The self-employed, meanwhile, have more freedom to adjust those demands when they feel they need to.

The self-employed reported that their working hours dropped by an average of 2.8 hours per week on diagnosis, while those who were employed did not see a change. This effect was not statistically significant, though.

Employees found that their level of autonomy at work also dropped marginally, while for the self-employed there was no significant change. We did not find any major changes in psychological or social conditions in either group.

So, what did we learn? Essentially, that improvements in working conditions after diagnosis of chronic illness were restricted to the self-employed. So employers may need to ask themselves some hard questions – do they want to hold on to workers who become unwell? If they do, then they should consider the levels of flexibility they offer, and they should think about making adjustments for those workers if they don’t want to lose them.

In an ageing society, older people are expected to work ever longer and therefore to remain at work even when they begin to suffer from health problems. Our findings should also encourage policy-makers and governments to think about how chronically ill older adults are treated at work.

Changes in autonomy, job demands and working hours after diagnosis of chronic disease: a comparison of employed and self-employed older persons using the English Longitudinal Study of Ageing (ELSA)by Maria Fleischmann, Ewan Carr, Baowen Xue, Paola Zaninotto, Stephen A Stansfeld, Mai Stafford and Jenny Head, is published in the Journal of Epidemiology and Community Health.

This blog article is courtesy of the Work Life blog, which is a blog about the relationship between work and  health and well-being of people, whether they are preparing for  working life, managing their work / life balance or preparing for retirement and life beyond retirement. Led by the ESRC International Centre for Lifecourse Studies, University College London,

Internship insights: how to find and get one as a PhD student.

guest blogger6 September 2018

Internships are increasingly being seen as a valuable addition to PhD training. In fact a report commissioned by the Government recommended that, “All full‐time PhD students should have an opportunity to experience at least one 8 to 12 week internship during their period of study” (Wilson Review, 2012, p.8). But how do you go about getting one? And how do you convince your supervisors if they’re not so keen? Fran Harkness, PhD student at the MRC Unit of Lifelong Health and Ageing lets us in on her insights.  

I did an internship in the MRC External Affairs team March-June this year. I enjoyed it so much that I’ve since been asked if I’m being paid to persuade other students to go on one by demonic internship overlords? Anyway, as I had to do the hard work of understanding how to get one, I hope that I’ve managed to clarify the process a bit for you. Good luck!

Research it. Think about what you want to get out of this time. I was interested in science policy so it made sense to apply to the Academy of Medical Sciences policy internship scheme. Research councils have links with many organisations. You could intern with the Royal Institution to plan their Christmas lecture. The UKRI scheme sponsors students to get insight into areas as diverse as the civil service, Age UK, and Public Health England. Alternatively you could apply for funding to work in a research unit abroad to pick up new skills and ideas in your own field.

Take time over your application. You need to collate your CV, a statement of interest, and often a fresh piece of work, plus signature from your supervisor. I’d broach the latter first. Don’t do what I did once and stall asking your primary supervisor for so long that it’s now the day of admission and she surprisingly isn’t looking at her emails in Chamonix. That was after I’d spent, I mean wasted, five days writing a government POST note far out of my subject area for the application. On my second application I’d mortifyingly left in a note to myself in blank space after my essay. Proofreading doesn’t take that long.

Convince your supervisors part 1. My stalling behaviour was partly fuelled by anxiety that mine would say no. Your supervisors want to support you to finish on time and may believe that an internship will derail this ambition. Many schemes include a funded extension but their worry is that any absence breaks your flow and delays finish time. Reassuringly, researchers from the University of California found that interns don’t take any longer to graduate, despite halting their programme entirely during the three months. My experience has been that my internship returned me to a mental state helpful for finishing: professional, confident and newly reminded of the point of my research.

Convince your supervisors part 2. Like being asked by my parents to plan how I was going to take the bus into town by myself for the first time, my panel had kindly reservations for me to consider. They requested that I talk to previous interns about the benefits and challenges and how I would overcome the latter. They also asked that I continue to work on my thesis during my internship and that I take it up towards the end of my PhD so that there wasn’t too much write-up hanging over my head. Those last two things didn’t end up happening, but by this time I’m already on the bus into town and nobody minds.

Apply! With your head stuck in a stats problem or down a microscope you may forget that you have time for an internship. Look up and remember that your PhD is a training opportunity for the real world. You can gain new skills, meet contacts, and learn of roles you didn’t realise existed. It can help you get a job afterwards. At the Academy of Medical Sciences every single policy advisor I spoke to had done an internship there during their PhD. I know someone whose internship was so successful she’s now working part time for that organisation whilst finishing her PhD. On top of all this they’re great fun. Go on!

“Why am I doing this?!” A reminder.

guest blogger6 September 2018

In this post Betsy Jones (UCL Research Department of Primary Care and Population Health) writes about her experience of attending the Alzheimer’s Association International Conference and why we do the work we do. 

I have been assured that asking oneself “Why am I doing this?!” is not an experience unique to any one stage of a research career. The key is having a good answer.

At the height of the British summer heat wave, I travelled to Chicago, to give an oral presentation to the Alzheimer’s Association International Conference (AAIC) on a project I’ve joined, funded by the Dunhill Medical Trust, addressing inequality in primary care of people with dementia among UK ethnic groups.

The first phase of the project has already been published in Clinical Epidemiology and found that dementia diagnosis incidence was significantly higher in Black men and women compared to White men and women, respectively, and was significantly lower in Asian women compared to White women. Tra recently wrote a blog on this below. I presented these results along with new results showing inequality by ethnicity in prescribing of certain drugs among patients with dementia.

The presentation itself went smoothly, and I breathed a sigh of relief as I walked off stage. With the nerves and the bright lights out of the way, I was excited to find that a queue of people were keen to talk with me about the project.

Multiple researchers expressed how grateful they were that someone was looking into this area, highlighting that while the demographics of many developed nations are changing, the research has not often kept up. Others wanted to share personal experiences, speaking of the reluctance of family members to seek a diagnosis or medication even as their condition progressed, especially when cultural factors around memory problems and fear of stigma were at play. These conversations made clear that the need to identify inequalities and break down barriers to good quality care was not a problem unique to the UK, but everyone I spoke with reinforced how important it was to see that we’re working on it.

In the midst of Stata code, funding applications, and reviewer comments, we can lose sight of the goal. As researchers, we have the privilege of generating work that can improve peoples’ lives. We can be reminded of that by our Patient & Public Involvement advisors, our colleagues, or a review of the “Impact” section of our own funding application (and hopefully by this blog post). My conversations with a variety of people after my presentation was a wonderful reminder of the goal and impact of this project. I hope you can take a moment today to remember the goal of your work too, because you’re doing this for a good reason!

Launching the MARCH Network: Social, Cultural and Community Assets for Mental Health

guest blogger5 September 2018

Mental health is the single largest cause of disability in the UK, and it is estimated that almost a quarter of the country’s population are affected by mental health issues each year. So in September 2018, UK Research and Innovation (UKRI) announced £8 million of funding to bring researchers, charities and other organisations together to address important mental health research questions. One of the grants for £1.25m has been awarded to Dr Daisy Fancourt, Institute of Epidemiology and Health Care at UCL. Here she tells us about her new programme.

I am delighted to be launching the new MARCH Network. While many approaches to mental health focus on a ‘deficit’ approach, identifying and fixing ‘problems’, this new national network takes an ‘asset-based approach’, which gives prominence to the resources (or ‘assets’) that exist within our communities. This network proposes that these Assets for Resilient Communities lie at the centre of Mental Health (M-ARC-H), and can enhance public mental health and wellbeing, help to prevent mental illness and support those living with mental health conditions.

Specifically, we’re focusing on social, cultural and community assets which include the arts, culture, heritage, libraries, parks, community gardens, allotments, care farms, leisure centres, volunteer associations, social clubs and community groups. There are over 1 million of these assets in the UK and over the past decade there has been a surge in cross-disciplinary research into the impact of these assets on mental health. For example, social psychology research has illuminated the impact of these assets on social capital. Sociology and epidemiology research has demonstrated how these assets provide social support and engagement. Psychobiology and behavioural psychology research has identified specific mechanisms underpinning the effects of these activities. And anthropological and historical research has highlighted challenges in maintaining a sense of community for individuals.

However, despite this progress, research in this area is still in its infancy compared to research into other areas of mental health, and there are several challenges facing researchers. For example, much of the work into community assets is happening in silos: silos based on assets (such as research on arts and mental health happening separately from research on volunteering and mental health); and silos based on disciplines. Additionally, there is a recognised social gradient across community participation but precisely what barriers to access are and how they can be overcome remains poorly understood.

So the MARCH network aims to tackle these challenges through two core workstreams. Workstream 1 focuses on cross-disciplinary research and challenges. We will be exploring two core questions:

  1. What evidence is there, from a cross-disciplinary perspective, for how and why community assets impact on public health and wellbeing and the lives of those living with mental illness, and where are the gaps for future research?
  2. How can we use a cross-disciplinary approach to address methodological challenges in researching the impact of community assets on mental health and to provide meaningful data to different stakeholders and users?

Workstream 2 focuses on two research questions relating to engagement with community assets:

  1. Who amongst the UK population, demographically and geographically, currently engages with community assets and specifically how does participation vary dependent on mental health?
  2. What are the current barriers and enablers to engagement at an individual, organisational and policy level and how can we develop innovative approaches to enhance engagement, especially amongst those who are most vulnerable?

To answer these questions, MARCH will:

  • Bring together international leaders in mental health and community assets research and facilitate the development of meaningful partnerships with policy makers, commissioners and third sector organisations.
  • Run a series of planned ‘core’ activities (including roundtables, consultations and focus groups) to address these identified research challenges leading to a series of major new evidence and methodology reports.
  • Distribute £280,000 of ‘plus’ funds for new research projects and activities for identified research gaps.
  • Host a rich portfolio of impact and engagement activities to translate the research findings into policy and practice, and encourage greater public engagement with community assets.
  • Design and deliver a training and support programme to develop cross-disciplinary skills and expertise amongst the next generation of researchers.

This network is extremely topical right now: it fits in with major developments in mental health such as the roll-out of social prescribing through NHS England and sits well alongside biomedical approaches to mental health. So as we imagine the future of mental health, a strong role for community assets appears inevitable. But we need to ensure that we have robust research underpinning this so that practice does not overtake research. Overall the MARCH network has the aim of transforming our understanding of how community assets can be mobilised to encourage more resilient individuals and communities and moving this area of work from the sidelines of mental health research to the mainstream.

If you are interested in receiving updates or becoming involved, you can register with the network at www.surveymonkey.com/r/M-ARC-H

Investigator team:

  • Dr Daisy Fancourt (Principal Investigator, UCL)
  • Prof Kamaldeep Bhui (Queen Mary University of London)
  • Prof Helen Chatterjee (UCL)
  • Prof Paul Crawford (University of Nottingham)
  • Prof Geoffrey Crossick (School of Advanced Study, University of London)
  • Prof Tia DeNora (University of Exeter)
  • Prof Jane South (Leeds Beckett University).

Partners:

Action for Children, Action for Happiness, Age UK, Arts Council England, Arts Council of Wales, Beyond Skin, Coin Street Community Builders, Community Catalysts Ltd, Crafts Council, Creative Scotland, Culture Health and Wellbeing Alliance, Department for Culture, Media and Sport, Department for Environment, Food and Rural Affairs, Greenwich Leisure Ltd, Historic England, Libraries Unlimited, Live Music Now, Local Government Association, Mental Health Foundation, MIND, MindOut, Mosaic Youth, Museums Association, National Trust, Natural England, NCVO, NESTA, NHS Health Scotland, People Dancing, Public Health England, Public Health Wales, Rastafari Movement UK, Royal Horticultural Society, Royal Society for Public Health, Sing Up Foundation, Social Farms and Gardens, Social Prescribing Network, The Children’s Society, The Conservation Volunteers, The Eden Project, The Heritage Lottery Fund, The Listening Place, The Reading Agency, The Wildlife Trusts (UK), Think Local Act Personal, Voluntary Arts, What Works Centre for Wellbeing, Wonder Foundation, Youth Music, Youth Music Theatre UK, UK Theatre.

Dr Daisy Fancourt is a Wellcome Research Fellow in the Department of Behavioural Science and Health at UCL specialising in psychoneuroimmunology and social epidemiology. Her research focuses on the relationships between cultural and community participation and health outcomes across the lifespan.

https://iris.ucl.ac.uk/iris/browse/profile?upi=DFANC73