Cancer and the simple pleasure of a good cuppa

Posted by Duika Burges Watson, Lecturer, Institute of Health and Society, Newcastle University

Thousands of people will today enjoy catching up over cake and a cuppa for the World's Biggest Coffee Morning, Macmillan Cancer Support's biggest fundraising event. But what if after cancer that cuppa and cake don’t taste right?

“When I had been through the treatment and was supposedly ‘cured’, I had hoped a cup of tea would do what it had always done and give me pleasure. But it didn’t, the tea had a textural product in it so I could swallow it. It wasn’t tea anymore, I felt miserable with it”

So said one of the head and neck cancer survivors who participated in our NIHR Research for Patient Benefit (RfPB) funded study, ‘Resources for Living’. Living beyond the life-saving treatment for cancer, all participants in our study had on-going difficulties with food and eating. It’s not the same for everyone, some people return to normal eating, but for those that live long-term with ‘altered eating’ and the unique difficulties they have, it can be miserable.

Since we formed the Altered Eating Research Network at Newcastle University following the end of the study, we’ve come to appreciate just how widespread the problem is of altered eating. Far from limited to cancer survivorship, we have a long list (and one that grows with each successive public engagement event) of conditions and experiences that may result in altered eating. We define ‘altered eating’ as a changed state of any combination of physical, emotional and social interactions with food and eating that has a negative impact on health and wellbeing. It’s a deliberately broad definition that we’ve found useful in charting a new approach to addressing it.

And on public engagement. We are very lucky to have Sam Storey, BBC Food and Farming ‘cook of the year’ finalist, 2018, as one of our team members. His passion for food notwithstanding, Sam has a unique empathy for those that have lost enjoyment in food and a remarkable skill at finding ways to bring that pleasure back. If there was a headline for our research and events it would be that ‘pleasure matters’. With increasing evidence[1] from the neurological sciences, and the advent of a research focus on ‘hedonia’(pleasure) and eudaimonia (satisfaction) in human wellbeing (e.g. the Journal of Happiness Studies) it appears there is a very real reason for the importance of pleasure to wellbeing. Combined with the feedback we get from events and research, we are ploughing ahead with a whole range of ideas of how we can help those that experience a loss of pleasure and find eating a burden.

Over the summer we ran two very successful events in collaboration with the Whitley Bay Film Festival. Two chocolate themed events - a ‘smell-along’ experience of the Spanish movie Like Water for Chocolate, and an ‘eat-along’ experience of Chocolat. They were for general audiences, but at each we introduced the films with information about the research we are doing with Altered Eating. Both events were sell-outs and great successes. You can read a blog about one person’s experience of the first event here. But as with the other events we’ve held in the last year or so (flavour masterclasses for example) we invariably discover something new, meet someone who is affected and distressed by altered eating difficulties.

Cook Sam Storey and Dr Duika Burges Watson: raining chocolate for the film festival

Our first serving during Chocolat was the most delicious hot chocolate timed perfectly to coincide with the moment Vianne Rocher (Juliette Binoche), an expert chocolatier, opens her shop in a conservative and austere rural French village. At 24 minutes in she serves hot chocolate, prepared with a ‘special kind of chilli pepper’, to the disbelieving Armande (Judi Dench), her elderly, eccentric landlady. With the first sniff and taste, Armande is emotionally transformed from bitterness to joy. For most of the movie-goers, the hot chocolate Sam had prepared was indeed a joyful experience. However, in presenting it to one person they told me “no thank you, I don’t like chocolate”. At first, I was perplexed, why pay for a chocolate eat along film if you don’t like chocolate? But then, in our research we’ve experienced this before, participants who didn’t want to participate in ‘eating’ at food play events (or not at first anyway). A reminder that food is more than about eating and that the commensal experience of being together with others matters too.

But chocolate is a little unique in terms of eating pleasures. As Professor Barry Smith, a member of the AE Network and expert in the sensory and hedonic elements of food notes, chocolate is for most, a hugely pleasurable experience that is both about flavour and texture, “the pleasure of anticipation and the reward in eating it match up. The aroma and the taste are the same. And that matters because there are two sorts of pleasure ivolved. When you start eating it, turn it around in your mouth to get the melting quality which strokes the tongue. Receptors in the tongue then respond to this stroking and it's a different feeling from touch. That's why we love a velvety wine or double cream - it's the feeling on our tongues”.

Ah yes, no wonder the tea didn’t ‘taste’ right.


Reference:

1. Kringelbach, M.L., 2015. The pleasure of food: underlying brain mechanisms of eating and other pleasures. Flavour, 4(1), p.20.

Collaborating, meandering and consolidating to identify research priorities on welfare advice and health

Posted by Natalie Forster, Senior Research Assistant and Monique Lhussier, Associate Professor in Public Health and Wellbeing, Northumbria University and Fuse

As the judges of the Man Booker prize for fiction whittle down their long list and decide on the shortlist of books in the running for best novel of the year, we’ve been making a few (more research focused) lists of our own.

Setting aside our individual research plans and ambitions to focus on welfare and health

Funded by the NIHR School for Public Health Research, we are currently working collaboratively (from across Fuse, University College London, The University of Sheffield, and London School of Hygiene and Tropical Medicine) to set the future research agenda in the area of welfare advice and health. Working across this number of institutions, we have managed to set aside our individual research plans and ambitions and combine our expertise in a series of workshops to focus on the issues of welfare and health. Colleagues from the welfare advice sector have agreed to join us and are keeping the discussions grounded in the realities of practice, over the course of four workshops (this blog marks our half way point).

The first workshop saw us (tentatively at first) present our research to each other; with both our detailed topics and methodologies varying significantly, as one might expect. Deciding which research questions to pursue is a daunting task. Shortlisting questions was a delicate juggling act of managing our respective interests and expertise, while keeping practice perspective up front and centre, to ensure the usefulness of our future findings. This process also opened up fundamental discussions about the role of welfare advice in society, and how this should be studied.

One key area of debate concerns whether we should study the health impact of welfare advice, welfare itself, and/or systems of welfare provision in their broadest sense. At present, the UK boasts a welfare system that, in its complexity and inaccessibility, needs the intervention of advice services for users to access their entitlements. As researchers, should we therefore focus our attention on this hostile welfare environment, thought to perpetuate or deepen health inequalities, as opposed to advice services themselves? For example, a research emphasis on the health outcomes of advice might have been interesting but could play into wider failings to make benefits accessible if the advice-health relationship is proved any less than definitive. The group also considered whether advice services should be studied as an intervention or in terms of their function within society.

Further discussions centred around which outcomes, and particular user groups to focus on, and whether to study universal or means tested benefits, continuously swerving between the pragmatic and the theoretical, the national and the local. These fruitful meanderings were captured in a long list of possible research questions which we then worked to weigh up against agreed criteria. The result? A consolidated and (slightly!) shortened list of research questions, focused on five priority areas:

1. Are there inequalities in the impact and reach of advice services across social groups? How/ does advice delivery mode matter?
2. What are the individual and system level impacts of the de-implementation of advice services?
3. What are the impacts of changes to welfare provision on children, inter-generationally and throughout the life course? 
4. How do experiences of social welfare vary by social group, geographically and across generations? How do different identities combine to influence how social welfare is understood? 
5. What is the impact of the rise in precarious employment and low wages on advice seeking and provision?

So quite a research agenda to fulfil! Throughout the remainder of the project, we’ll be engaging with advice sector representatives and recipients of advice to hear their views on the directions research in the area should take before developing concrete plans for how we could actually carry out this research. After that it’s time to commit pen to paper and draft those grant applications!

What has social media got to do with your mental health?

Niamh McDade, Senior Policy and Communications Executive at the Royal Society for Public Health

There is no denying that social media has revolutionised the way we communicate and share information. Social media has become a space in which we form and build relationships, shape self-identity, express ourselves, and learn about the world around us – so it’s really no surprise that social media is intrinsically linked to mental health!

Social media has huge potential to support good mental health and wellbeing and indeed, in many ways it does. Our Status of Mind report published in May 2017, examined the positive and negative effects of social media on young people’s health and after surveying 1,479 14-24 year olds, we revealed many benefits of social networking. It can provide young people who may be suffering from mental health issues an opportunity to read, watch or listen to, and understand, the health experiences of others – relating them back to their own reality.

We also found nearly seven in 10 teens reported receiving support on social media during tough or challenging times via ‘groups’ or ‘pages’ which allow users to surround themselves with like-minded people and share their thoughts or concerns. Adding to this, social media can act as an effective platform for accurate and positive self-expression, and a place to share creative content and express interests and passions with others.

All in all, it seems great, right? And you are probably asking why a public health organisation would be running a campaign asking users to go Scroll Free this September!

Whilst there are a range of benefits, for many of us, our relationship with social media has become a little complicated. This is understandable in an online world where we are faced with a constant influx of images and videos, unrealistic beauty standards and an endless stream of apparently blissful, happy relationships. Our research has shown social media to contribute to anxiety and depression, poor sleep, negative body image, cyberbulling and FoMO (fear of missing out) – characterised by the need to be constantly connected with what other people are doing, so as not to miss out.

Scroll Free September offers a unique opportunity to take a break from all personal social media accounts for 30 days during September. A good relationship is one of balance, and Scroll Free September is here to help you gain that with social media both on and offline. By going Scroll Free for a month, you’ll have a chance to reflect on your social media use – what you missed, what you didn’t, and what you got to do and enjoy instead!

The idea is that by taking notice of and learning which elements of social media make you feel good and which make you feel bad, participating in Scroll Free September could help you build a healthier, more balanced relationship with social media in the future – a relationship where your use is conscious and mindful, and where you are the one in control.

We know that going cold turkey on social media may seem a bit much of an ask for some, so before you start tweeting your excuses, there are a range of different options to make your participation that bit easier including:

1. The Cold Turkey

Give up all personal social media for 30 days. Looking for #inspo? Emma Stone, Jenifer Lawrence, Elton John and Simon Cowell are all scroll free.

2. The Night Owl

If going cold turkey sounds a bit much, you can choose to take a break from social media at evenings after 6pm.

 

 

3. The Social Butterfly

Why not try taking a break from social media at all social events - talk to your friends, listen to the music, eat your burger without worrying about the insta post – #connect.

4. The Sleeping Dog

Find yourself going to bed at a reasonable time with the best intentions, then spending hours scrolling through your social media accounts? Is the first thing you do in the morning check your newsfeed? Give up social media in the bedroom and improve your sleep.

5. The Busy Bee

Secretly scrolling your way through the working day? Give up social media in school, work or university and maximise your productivity.

Whichever plan you choose is up to you, but the more you disconnect with social media, the more you might get from it. You can still use it for work and of course, still use your device for other purposes. Our hope is that by the end of the month you will be able to reflect back on what you missed, what you didn’t, and use that knowledge to build a healthier relationship with social media which will last into the future.

Why not join almost 5,000 others across the world who have already signed-up. Who knows what you could get up to with all that free time spent Scroll Free!

Take the plunge and sign-up at www.scrollfreeseptember.org

Wishing you the best of luck!