Using board games to increase inclusion in research - a trivial pursuit?

Posted by Lesley Haley, AskFuse Research Associate, Teesside University 

Did you play any board games over the holidays? As we scrabble into 2024, have you ever thought about how they could be used as a way to engage people in your research?

I hadn’t, until I went to a recent Creative Methods in Research conference, where Kath Maguire (University of Exeter/NIHR School for Public Health Research) showcased how using board games in research was anything but trivial! Kath demonstrated the concept of using board games in public involvement and engagement can increase participation by reaching people less comfortable with standard formats of engagement or data collection, such as interviews or questionnaires.

Kath brought examples, like a “pairs” game used with public partners to break down barriers of understanding around the jargon used in research. Pairing research jargon, concepts or acronyms (‘randomised control’, ‘double blinded’, ‘SPHR’, ‘NIHR’ for example) with their plain English explanations allowed all participants to probe the underlying assumptions and constructs, and perhaps to reduce the power imbalance between the knowledge giver (usually researchers) with the knowledge receiver (usually public partners). And of course this game can be used to redress that balance by public partners sharing their knowledge with researchers.

However, the most surprising game that Kath has used in increasing involvement was the repurposing of that classic multicultural game, Snakes and Ladders.

While AskFuse (the responsive research and evaluation service run by Fuse) created the pictured Snakes and Ladders game as an interactive way to explore successes (Ladders) and setbacks (Snakes) of getting research knowledge used in practice, Kath has taken the game to a whole new level.

Kath has a wealth of experience in using board games as a creative method of inclusion to reach people less comfortable with more literacy-based research methods. They bring a blank paper board and a variety of stick-on snakes and ladders as a visual prompt to generate discussion and reflection using the metaphor of the game to explore a range of experiences. The aim is not necessarily to play the game, but to use the building of a bespoke “game” to reflect and “illustrate” narratives and experiences.

Participating in Kath’s interactive workshop was, for me, a real game changer. We explored how using snakes and ladders enabled discussion, reflection and inclusion. We could design our own individual game to tell our story, or do it collaboratively. We used the game layout as a metaphor for exploring changes through time or to illustrate a “journey” (for example, exploring access or barriers to health services). It allowed us to describe and reflect on different pathways or starting points. Being a physical representation of our narrative meant that, at times, “gaps” emerged which led to questions around “what was happening here?” and “what are we missing?” The grid could also used to reflect emotional journeys in response to a given (research) question or situation. We explored how focussing on a game allowed for different viewpoints to emerge and for less vocally confident people to engage without having to “carry” a conversation or justify their experience. The game squares could be filled with comments, contributing factors, and ideas. We reflected that the snakes and ladders could be reconfigured for creative re-imagining of time/place/situations - “what would happen if we did this”? And of course the complexities of the research process can be illustrated through the metaphor of Snakes and Ladders.

At the end of the session, there was a tangible product and graphic representation of the research question, the process and the outcomes of the exploration. We reflected that over several sessions, the game would perhaps change and this progress could be captured in photos. The “game” could also then be used creatively to disseminate the research (Coon et al 2022).

We also explored the risk that a gaming method for engagement or data collection, especially in the “Snakes & Ladders” format, could be seen by some people as trivialising the serious business of research, as in the UK it is perceived as a child’s game. However the game is not all it appears. Originally known in “Moksha Patamu”, it was a philosophical game of actions and consequences for adults developed in ancient India (Museum of Gaming 2015). Over time and locality, the game has evolved into other versions, with snakes transformed into “drainpipes” or “chutes (Start the Week 2023). So the game has a tradition of being adapted and re-purposed and perhaps we should not be shy of re-purposing it to make research more accessible?

Since Kath’s workshop, I’ve had a quick look around to see if there are other researchers using gaming. While there is literature on using board games in health education and promotion (Nakao 2019) and public health policy (Spitters 2018) there seems less on the use of board games in public involvement and engagement in health.

Of course, snakes and ladders doesn’t have the monopoly on being the only board game that can be used. So, do you use board games in your research to engage with people and communities? What's been your experience of what works for who? How do you pitch it? What have you found the setbacks and successes of using board games as a creative way of engaging people and communities?

As you scrabble to fit all the board games back into the cupboard after Christmas, maybe it’s time to reflect that participatory board games in research could be for the rest of the year too, not just for Christmas.

With thanks to Kath Maguire for the interactive workshop and to SPHR for funding attendance at the conference.



References:

Coon, J.T., Orr, N., Shaw, L. et al. (2022) Bursting out of our bubble: using creative techniques to communicate within the systematic review process and beyond. Syst Rev 11, 56 https://systematicreviewsjournal.biomedcentral.com/articles/10.1186/s13643-022-01935-2

Kath’s work:

Museum of Gaming Newsletter (2015) Issue 2 Snakes and Ladders History. Accessed 2 Jan 2024 Available at: https://www.museumofgaming.org.uk/documents/Newsletter2.pdf https://www.museumofgaming.org.uk/index.cfm

Nakao M (2019) Effects of board games on health education and promotion” board games as a promising tool for health promotion: a review of recent literature BioPsychoSocial Medicine (2019) 13:5 https://doi.org/10.1186/s13030-019-0146-3

Spitters H.P.E.M , van de Goor L.A.M, Juel Lau C, Sandu P , Eklund Karlsson L , Jansen J, van Oers J.A.M (2018) Learning from games: stakeholders’ experiences involved in local health policy Journal of Public Health | Vol. 40, Supplement 1, pp. i39–i49 | doi:10.1093/pubmed/fdx149 https://academic.oup.com/jpubhealth/article/40/suppl_1/i39/4925598

Start the Week: Playing Games (2023) BBC Radio 4 Monday 4th December 2023 09.00 Available at: https://www.bbc.co.uk/sounds/play/m001t2xq?partner=uk.co.bbc&origin=share-mobile (Accessed 8 Dec 2023)

Being part of UC:US

Posted by Maria Thompson, UC:US member, and Ruth Patrick, Lecturer in Social Policy, University of York

Illustration by: www.hatiillustration.com 

In this blog post we hear from Maria, a member of UC:US, a group of people claiming Universal Credit in Belfast working to share experiences of the benefit and to make recommendations for change.

Maria was introduced to Fuse by Ruth Patrick, from the University of York, after an exclusive showing of a new play called 'Credit', described in this accompanying Fuse blog post by Mandy Cheetham.

Maria took part in research with Universal Credit claimants living in Northern Ireland funded by Joseph Rowntree Foundation (JRF)*.

The below is in Maria's own words and has been unedited.


Two years ago, I was made redundant. Due to my postcode I had to claim Universal Credit. This created a massive snowball effect and after two years I am still dealing with the negative consequences. Claiming Universal Credit was the easy bit. I found myself in rent arrears of £1600 and with an old tax credit overpayment of £1400. A week later the eviction letters arrived. Even after explaining my situation, I was faced with third stage eviction letters. I got legal advice from my solicitor as I was already getting divorced and I contacted my MLA (Member of the Legislative Assembly of the Northern Ireland Assembly) for more help.

Listen to Maria's experience of Universal Credit

My MLA asked if I’d be interested to get involved in a research project funded by the Joseph Rowntree Foundation and working with Mark Simpson (Ulster University) and Ruth Patrick (University of York). Mark met with me first, and we talked about my experiences on Universal Credit. Then, we met up as part of a wider group with about 12 people who are on Universal Credit across Belfast. The group met over the course of a year and we decided to name ourselves UC:US.

The purpose of the project was to gather information from different participants’ experience of Universal Credit. We discussed our stories individually.

From day one, nobody had anything positive to say. We all agreed that Universal Credit needed to be drastically improved or scrapped. We worked with an illustrator to show our journeys on universal credit; talking about how the benefit made us feel. We also heard from other experts about their ideas for change to Universal Credits. We put it all together in a leaflet setting out our recommendations for change.

We found that for Universal Credit to be improved, there is a need to:

• Increase the amount paid to avoid people living in poverty
• End the 5 week wait time for a first payment
• Stop the benefit triggering debt 
• Have experienced and trained staff 
• Make Universal Credit user friendly. 

After we concluded our findings, we were delighted to be invited to speak at the House of Lords. We were all excited about a day trip to London and to the Houses of Parliament. This was cancelled due to Coronavirus. We did eventually though get to participate in a meeting virtually at the House of Lords on Universal Credit via Zoom, hosted by Baroness Ruth Lister, and organised by the Social Policy Association. This for our group was very empowering to hear our voices being spoken, listened to and approved by Members of Parliament and the House of Lords.

UC:US hope the government can learn from past mistakes so that Universal Credit can be improved. We want a future where new claimants are not financially scarred or mentally drained from a never ending battle for pennies only to end up owing thousands.

You can find out more about the work of UC:Us at www.ucus.org.uk

* More about the research

As part of research funded by Joseph Rowntree Foundation (JRF), Universal Credit claimants living in Northern Ireland took part in a series of six participatory workshops in 2019. These workshops - which were conceived as 'experts by experience panels' - were a chance for participants to share their experiences and journeys on Universal Credit, and to work together to develop recommendations for change. Importantly, the project adopted a participatory approach; and participants were involved in all the key decisions; including choosing which arts-based output to develop to share key project findings. Participants decided to develop an illustrated flyer; working in partnership with illustrator Hannah Miller. Participants also had the opportunity to hear from people with other forms of expertise about their views about what changes are needed to Universal Credit, and why, and to use that information to inform key decisions about their final recommendations for change. 

 

The project findings have been published by JRF, and participants have since taken part in policy meetings and discussions with Northern Irish politicians and officials, as well as talking at a number of national parliamentary events. The project is now entering a new phase, with funding from the Economic and Social Research Council enabling collaborative work to continue policy discussions between the participants - who call themselves UC:Us - and policymakers and work to create a guide for new claimants of Universal Credit.

Summer school at home: Learning online and adapting research to reach the ‘hard to reach’

Posted by Emma Adams, Newcastle University, and Jo Dawes, University College London, NIHR School for Public Health Research (SPHR) Pre-Doctoral Fellows

Starting a new post in a new institution just as a global pandemic and lockdown sweeps the UK is not how we envisaged beginning our NIHR School for Public Health Research (SPHR) fellowships. When our training and development allowance letters came through initial thoughts were to delay booking any training until it was possible to attend in person. However, as time passed, it became clear we may be waiting some time. This realisation coincided with hearing about the “Applied Research Methods with hidden, marginal and excluded populations” course run by Nuffield College, University of Oxford. The course is usually a weeklong residential summer school, but this year it was offered online. The idea of spending five full days sitting at home doing online learning seemed a disappointing second best to a week in Oxford and somewhat limited our enthusiasm. However, these concerns were misplaced. We could not believe how engaging the course was, with tutor Andrea Rossi doing an excellent job of varying the activities, keeping us captivated and packing the course with relevant, interesting, and interactive tasks. 

For this ‘participatory research method’ we were given 5 minutes to create a map of our childhood community, using items we could easily reach. The task was designed as an ‘icebreaker’ activity to start a conversation about our childhoods. Using available objects, rather than drawing, takes away any pressure interviewees might feel about their aptitude for drawing. This activity could be adapted in rural communities using found items outside. Once my map was created, I talked about the map and why I had highlighted specific aspects of my community - this is the point at which ‘data collection’ might start.

Beginning with what makes a population ‘hard to reach’, we were armed with the linguistic tools to define whether our population was hidden, marginal, elusive, rare, excluded, or blurred (see Table 1 for breakdown). By breaking down populations into these different categories, we were better able to understand approaches for reaching and involving them in research. People experiencing homelessness may be perceived as ‘hard to reach’, when in fact they might just be elusive (purposely hiding or not reporting). If we, as researchers, recognise individuals may be making a conscious decision not to report, then perhaps we need to build a foundation of trust. The responsibility a researcher has to find ways to reach the ‘hard to reach’ was one of the most important things that we learned. 

With optimism that the virtual learning might not be as onerous as we had feared, we jumped into three days of research methods (both qualitative and quantitative). Challenging us to approach every technique from both the researcher and participant perspective, we were pulled out of our comfort zones and into creatively mixing research techniques. Opportunities to transform recruitment strategies (such as respondent driven sampling into a data collection tool for analysing social networks were explored. Learning to make the interview experience more interactive challenged our preconceptions of data collection - ever thought about asking a participant to reconstruct an important/memorable place with only items in their kitchen? Having experienced this first-hand, we both agree it was a great facilitation tool as a participant and researcher. The breadth of material in the course left us feeling that it was a week well spent, despite the initial apprehension and sitting at a computer in the blistering summer heat.

As a result of attending this course, we have already adapted how we approach our research activities. Jo was struggling to define a ‘hard to reach’ population in a patient and public involvement (PPI) paper. The course provided real clarity about this topic and helped her confidently address this definition in her writing. Emma was trying to find a way to approach recruitment and the re-shaping and framing of populations has provided me with optimism about my future recruitment strategy.

There is no doubt that by learning online instead of face-to-face, we really missed out on networking opportunities with our course peers - nothing could really replace a good natter over coffee. Conversely, the online nature of the course really opened up the cohort - we were learning with people sitting in their homes in England, Wales, Switzerland, France and Germany, while our tutor taught us from his apartment in Bangkok. Perhaps without being online, we would have been a far less international cohort. After undertaking this excellent course, we certainly feel more positive about online learning, how engaging it can be and how - in these uncertain times - it is important to not simply wait for face-to-face learning to return as the norm. The variety of learning and research activities we used online challenged us to translate so much of what we usually do face-to-face to our ‘virtual classroom’. As a result, we developed skills in how to adapt our current methods of communication in our research.

Our take home messages from the course:

1. Online research and learning can work well if you are creative and willing to be flexible.
2. Researchers must consider reasons some populations are ‘hard to reach' (are they rare, hidden, elusive, marginal, excluded or blurred?).
3. When you recognise WHY a group of people are ‘hard to reach’, you must adapt your research methods to better reach them.
4. Through mixing methods/data sources you can strengthen your understanding of ‘hard to reach’ groups.

Does reaching the ‘hard-to-reach’ mean leaving traditional academia at the door?

Angela Wearn, PhD Researcher, Department of Psychology, Northumbria University

“You tend to find the ones that are protesting and telling you to go and get your smears are the ones that have their cushy little jobs and that lovely flash car that they can just jump in and dive down to the doctors”

From all the conversations I’ve had throughout my research career, this is one of the quotes that has stuck with me the most. For over three years I have been working on my doctoral research, conducted across Newcastle, which explores barriers to cervical screening participation in areas of high relative deprivation. We know that uptake rates tend to be lower in areas of socioeconomic disadvantage, but reviewing existing literature showed very little insight from women who lived within these communities themselves. Incidentally, I am one of these women. I grew up, and still live, within a neighbourhood which, according to the Index of Multiple Deprivation, falls within the 10% most deprived areas in the country. It’s therefore no accident that I ended up with a programme of research which aimed to prioritise the voice of this community.

Graffiti walls can be a simple and effective way of starting conversations

Initially, I had dreams of a wonderfully participatory project, where I formed a steering group and we worked together to find answers and seek solutions. As often happens in research, time ticked on and it didn’t work out the way I had planned. My participatory ideals had to take a backseat for a less time-consuming participant-researcher approach. I suspected my ‘insider’ status might open doors for me and to be fair, it did. I found myself being able to quickly connect and build a rapport with others when I discussed my own background and why I wanted to do this project. However, getting to the point of even having these conversations was by no means easy. I spent days, weeks, months trying to speak to community groups, charities and community members about my research. Some were very open and interested, others were not. I attended community get-togethers handing out cakes alongside research information, making ‘graffiti walls’ with post-its, even chatting about life over freshly made biryani at a cookery club. Actually, these were the most rewarding and enjoyable moments over the past three years, but the more I did this the more I felt I was straying from what academia expected of me. I also began to feel my status as an academic researcher was a hindrance to what I was aiming to do at community level. For a lone PhD researcher, bringing together these two worlds, at times, felt completely impossible.

"community get-togethers...were the most rewarding and enjoyable moments over the past three years, but the more I did this the more I felt I was straying from what academia expected of me"

Attending community events was a great way to connect with 

people who were otherwise unfamiliar with research

The quote at the beginning of this blog was when it all clicked into place. Although we were talking about cervical screening, I acknowledged something that I had already known all along - the same issues of accessibility and trust apply to involvement with academic research. If I put my working-class hat on for a minute, academic research feels neither accessible nor promotes interpersonal trust. From the outside, academia appears to be filled with people who think they know better than you, patronising you, sometimes even using you to showcase the poor decisions people make in life. I had to work hard to reassure people that I wasn’t there to pass judgement on their screening status. I’m still not sure many believed me. ‘Eat a healthy diet’, ‘Stop smoking’, ‘Engage in physical activity’, ‘Attend your screening appointments’. These are the messages that come through, focusing on the individual and discounting all the structural and social barriers that exist for people living in communities like mine. If you are trying to figure out how to afford the weekly food shop, the kids have come home with a tear in the coat you only bought a fortnight ago and you’re worried about not getting enough work from your zero hours contract, there is no mental space for ‘living your best life’ (and certainly no space for sitting with a stranger from some university taking part in a research study).

Those living in socioeconomically disadvantaged areas are often described as ‘hard-to-reach’. This often implies that despite best efforts to reach out, these groups are disinterested and disengaged. I tend to believe the reverse is true. Some groups are hard to reach because academic research is too disengaged from the community. I know of many academics who are so obviously committed to tackling the avoidable and unjust disparities in health, and for this reason I do feel positive for the future. However, as someone who is positioned in between the ivory towers of academia and the working-class neighbourhoods at home, I know there is still a lot of work to do. There is a long history of mistrust and marginalisation to put right. If we are serious about tackling inequality and involving so called ‘hard-to-reach’ groups in research, then we need more focus on developing trust and togetherness…and occasionally, this might mean leaving traditional academia at the door.

Research on the go with women in walking groups

Posted by Stephanie Morris, Research Fellow, University of York

In this blog Steph reflects on the use of mobile ethnography in a recent study of the place of walking groups in the lives of women in deprived areas of north-east England.

Ethnography’s signature method, participant observation, or ‘hanging out’, provides rich data inaccessible by other forms of qualitative research. Mobile ethnography, as the name suggests, uses this methodology in the context of mobility. It can involve ‘go-along’ interviewing (See Carpiano 2008, Kusenbach, 2003) and participant observation as researchers travel and converse with participants.

When conducting research with women in walking groups, I found that mobile ethnography facilitated inclusivity and openness. For example, some women were interested in participating in the study, but uninterested in having a formal ‘sit down’ interview. So this approach opened up the study to those who might not usually opt to take part in research. Walking with study participants also enabled me to build rapport in a more ‘natural’ way than in a one-off interview, when the research and participant go in ‘cold’. Walking and talking, what the women did on the walks, encouraged free and open conversation: participants talked a lot to me about the intricacies of their lives, as they did with each other.

Mobile ethnography produces data which I feel is not likely to be created in static interview interactions. In ‘go along’ informal interviews, objects and embodied experiences along the route are often talked about. Conversations ranged from discussing fly tipping and historical features in the landscape, to sharing experiences of bodily sensations whilst walking in all weathers! Walking with the groups also provided a first-hand experience of the sense of safety and solidarity that comes with group walking. The following excerpt from my fieldnotes* shows an example of how this happened:

"As we walk along, Ashley who is in front of us by a few metres, points out that there is a hole in the path. She puts her stick down it and shouts to us to be careful of the hole. We do the same for the people behind us. Less than a minute later, Lisa says ‘step’, as there is a slight step in the hard soil and she is warning me about it. I do the same for the people behind me, and I get the feeling that I am being watched out for, and that I am instantly doing the same for the others."

Acts like this also quickly make the researcher feel part of the group, an insider participant-observer.

Despite its broad affordances, mobile ethnography is not without its challenges. The logistics of note taking when walking are tricky to say the least! I used the note function on a smartphone to take notes and took photographs along the route to remind me of encounters noteworthy of description. I walked with a Nordic walking group, which was even more difficult as I often had to carry the Nordic poles in one hand or clip and unclip at the group’s brief stops to quickly take notes of conversations or observations. However, as it was usual for people to walk alone for moments during walks, these times provided me with opportunities for note-taking. Conducting ‘go along’ formal interviews with a voice recorder was for the most part unproblematic; however, external noise was an issue at points near busy roads.

As with all ethnography, doing it well requires a lot of time and emotional labour. For instance, as transcribing fieldnotes is time intensive and needs to be completed as soon as possible after participating in the activity/group being studied, this task can clash with life’s other responsibilities. Likewise, as participants can become friends, research relationships and boundaries need to be carefully negotiated. And lastly, when using a method that helps to build rapport and relationships valuable for research, at the end of a project it can be difficult to say goodbye (and it was particularly hard to say goodbye to the many pleasures of group walking!).

There are many other contexts where mobile ethnography could contribute to health research, including but not limited to other physical activity and sustainable travel interventions. Why not give it a try?!

*Anonymised using pseudonyms

Actions bring risks

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

Engaging ‘harder-to-reach’ service users - Food as a Lifestyle Motivator

Guest post by Dr Clare Pettinger, Registered Dietitian, Registered Nutritionist (Public Health) and Lecturer in Public Health Dietetics, Plymouth University

My research (the Food as a Lifestyle Motivator (FLM) project) has explored the use of creative methods to engage with homeless individuals in discussions about their wellbeing. The project demonstrates that food, as well as being central to many health concerns, may also be a powerful ‘lifestyle motivator’ for those on the edges of society. During the project, powerful visual and narrative food themed data have been generated that provided a ‘voice’ for homeless individuals, challenging traditional research paradigms and identifying innovative approaches for engaging and empowering community groups that are traditionally ‘harder-to-reach’.

FLM was based on local evaluation work showing that, by engaging in food projects, unemployed and homeless individuals showed improvements in eating, self-esteem, and social skills (Pettinger and Whitelaw, 2012)1. I saw, first hand, socially excluded individuals being so moved and empowered by food activities that something really shifted in them. This was a ‘light bulb’ moment for me in my (early) research career!

The stark realities of extreme poverty (homelessness) are well documented, including food-related chronic/acute health problems and drug/alcohol addictions. Such transient communities have multiple and complex needs that present challenges for researchers, therefore, a democratic and creative approach can be beneficial.

The FLM pilot used ‘Photo-Elicitation’, which involved participants being issued with disposable cameras, given brief instructions on their use, then taking photos of their food activities over a ten-day period. Photos were then developed and focus groups run for them to discuss their images. In this context, the photograph is seen as a neutral third party (Schulze, 2007)2 and particularly useful when discussing issues with ‘vulnerable’ people (Liamputtong, 2009)3. Our findings illustrate how self-captured food photos (see selected examples) can both facilitate the process of food research itself, but also generate important ‘in-roads’ for lifestyle and wellbeing enhancements. Our small sample of nine homeless service users provided powerful narratives, showing that for them, food holds meaning, elicits emotion and exerts power; and that the food environment can be a critical social place: food preparation can provide companionship and occupation. Thus revealing the highly individualised perspectives of those who are doing the best they can in light of multiple deprivations.

"…I can’t eat in the dining room, because I am scared of crowds and large groups of people…" (Nemo)

"Food has become a major part of my life. I really enjoy cooking actually it beat the demons in my head……look how far I have come…" (Ross)

These creative methods have had their challenges. As an evidence based practitioner, I am trained to assess the hierarchy of evidence to ensure rigour and transferability of research design. Yet such highly structured and often sterile/impersonal research designs are far from appealing to the participant group I am interested in. With public engagement currently a key priority for research impact, the need to make methods more accessible to participants is crucial. Understanding the diversity of ‘harder-to-reach’ community groups, giving them a ‘seat at the table’ and listening to their voices is crucial to their engagement.

With hunger a topic of national debate, there is an urgent need to consider how to engage better with socially excluded individuals and communities. Creative approaches, such as Photo Elicitation, offer great potential and as such should be endorsed by public health directorates across the country.

This project has gained a lot of local (and regional) interest because it ‘ticks the box’ for innovative commissioning practices. Not only can this approach be used as a means to enhance health and wellbeing in a diverse range of service users, it can also be used for public consultation on service (re)design. Other than publishing the work (currently underway), current FLM data collection with service providers across the city is mapping food related assets and using ‘appreciative inquiry’ interviews to establish key priorities. Thus aiming for these approaches to be embedded into the local inequalities strategy, to inform food/nutrition policies - recommending the use of participatory socially inclusive food activities as part of service provision.

"Getting involved in food can be a starting point to address other things that are ‘broken’ and lead to progress in other ways" (quote from homeless shelter keyworker). Creative food methods can offer meaningful occupation, thus generating a virtuous circle where food promotes engagement and engagement promotes interest in self-care. Food, therefore, becomes an expression of empowerment, with the potential to enhance health, wellbeing and social justice.

References:

1. Pettinger C and Whitelaw E (2012) Food Cultures: Growing, cooking, eating: “An exploration of improving food practices in young men and older adults in Plymouth” Report written for DH funded project. Unpublished - available at http://www.foodplymouth.org/wordpress/wp-content/uploads/2013/01/Food-Cultures-FINAL.pdf 
2. Schulze, S (2007) The usefulness of reflexive photography for qualitative research: a case study in higher education. South African Journal of Higher Education 21 (5) 536-553
3. Liamputtong P (2009) Researching the vulnerable. A guide to sensitive research methods. London Sage. p112

Aspiring to new lows in North West waistlines

Guest post by Naoimh McMahon, Postgraduate student, NIHR CLAHRC NWC

In theory weight management is a ‘simple’ balance between consuming enough energy to adequately fuel ourselves and moving enough to ensure that extra energy is used up. However, in reality there is a complex web of influences that determine our eating and activity habits. We are becoming increasingly more sedentary and are prone to consuming more energy-dense foods. This combination is making the energy balance harder to achieve. When it comes to weight management interventions, what works for one individual is rarely guaranteed to work for the next and so there are real challenges to understand what the right mix of actions are to enable people to achieve and maintain a healthy weight.

Last summer, when preparing a doctoral fellowship application I met with providers and service users from a range of local health improvement initiatives in the North West of England. I was really intrigued by one initiative in particular called Aspire. Aspire is a weight loss programme delivered by a local charity. The design of the programme was unlike any other weight loss programme I had encountered and there was a real sense of personal investment in the programme from both the providers and participants. The thinking behind Aspire is that for individuals who have a lot of weight to lose, intensive and ongoing support is needed to make a positive and sustainable change. The programme runs for 26 weeks and each group has 12 participants. Aspire includes all the traditional elements that you would expect to find in a weight loss programme such as advice and education on food and healthy eating. It also supports participants, many of whom have a body mass index (BMI) of over 35, to engage in graded physical activity.

I think what I found most intriguing about this programme was the emphasis it placed on the person, trying to build confidence and esteem to really convince people that they could achieve their weight loss goals. For example one of the activities that participants spoke about with most feeling was a step climb in a local park at the beginning of the programme. The Aspire providers discussed how this activity served two purposes: (i) to act as a ‘shock to the system’ by allowing the participants to really reflect on their current fitness levels and (ii) to provide a goal to work towards and make a commitment that it will never be that hard again. The group returned to this step climb at the end of the 26 weeks with smart phones in tow and there is some really fantastic footage that captures the excitement and pride at the progress they had made along with the disbelief at how it had once taken hours to complete.

There is never a ‘one size fits all’ and any programme will work for some but not for others. It certainly seems like now it is less about finding a single ‘effective’ or ‘perfect’ programme and more about trying to understand what it is about programmes that enable different people to make positive and sustainable changes. I think we will all know people personally who have taken control over their weight by stumbling upon park runs and ‘getting the bug’ or by using commercial weight loss programmes such as Weight Watchers or Slimming World - finding a system that really works for them. Like other weight loss programmes, there were Aspire participants who did not achieve their goal weight and there were participants who regained the weight that they had worked so hard to lose. What is important is not to write-off such efforts as ‘ineffective’ but to get a better understanding of how and why these outcomes came about. Aspire is only one example of a novel approach to enable people to lose weight but there are certainly elements that have been particularly effective for some participants.


Find out more about the programme and how participants felt about what worked for them.

Christmas dinner: a pleasure not to be underestimated

Posted by Duika Burges Watson, Fuse staff member and Lecturer in Evaluation and Policy Interventions, Centre for Public Policy & Health, Durham University

The final event for our research project exploring the potential of progressive cuisine to improve quality of life for head and neck cancer survivors was a Babette’s feast of sorts. Babette’s feast, the novella by Isak Dinesen (Karen Blixen), centres on the story of a most remarkable and transformative meal. In a remote and austere community in Northern Denmark, Babette cooks up a storm for the abstemious community. A religious cult denying all pleasure, the community is reluctant to eat anything that might be ‘wickedly’ enjoyable. Finally convinced of Babette’s desire to thank them for their support at the time of her father’s death, the French trained chef is permitted to use some new found wealth to prepare a sumptuous feast. During the multiple courses, the community is existentially transformed. Their enjoyment and love of life and feelings of well-being become undeniable as each delicious course is presented, despite their efforts to pretend otherwise...

Courtesy of amazon.co.uk

With our Christmas dinner, we didn’t set out to do anything other than thank the participants for their involvement in the research. We knew from our qualitative food play workshops (25 in all) that participant survivors missed the opportunity to socialise around food; their difficulties with food and eating (including swallowing, speed of eating, limited food choices, and fear of choking) made a ‘normal’ eating out experience unlikely[i]. So we invited the project’s Research Chef to prepare a Christmas meal that we hoped they would enjoy.

The tasting menu, or menu degustation (below) was designed as an adventure in dining, in which multiple very small courses make it easier to undertake - when you know that if you don’t like one, there are plenty more before and after to select from. The delightful setting at Irvin’s brassiere on the North Shields Fish Quay provided an opportunity for survivors to dine out, at their pace; to select from a range of dishes, and to enjoy some of the foods we now knew would be acceptable (with a diversity of eating difficulties, increasing options would ensure there was something on the menu for everyone). What we hadn’t anticipated was how much they’d enjoy the leisurely three hour lunch. Unlike the diners at Babette’s feast, survivors of head and neck cancer do not deny the pleasure of food, it simply may not be an option.


The menu that was offered to participants

Our Resources for Living research has centred on the potential of using some of the progressive cuisine techniques derived from the new ‘science of deliciousness’, an interdisciplinary approach to understanding our sensory perception of food with input from physics, chemistry, neurology and psychology[ii]. Chefs around the world are gaining insights into food in ways never before explored, and we developed the interdisciplinary research project on the assumption that some of these new understandings might improve quality of life for those living with the long term altered eating side effects of cancer and its treatment.

Our research, and the research of others, has showed that the loss of pleasure associated with food can be ‘almost unbearable’. Recent research in neurology suggests that there is one ‘pleasure centre’ in the human brain. In other words, “the pleasure evoked by food is remarkably similar to that of other rewards, suggesting a unitary pleasure system, whether engaging with food, sex, social or higher-order rewards”[iii]. In our research, finding ways to improve quality of life is intimately connected with the loss of pleasure. While we uncovered some ‘compensatory pathways’ such as participants finding pleasure in cooking for loved ones or engaging in exercise, the ability to eat a nine course meal appeared to do much more than just provide satisfaction. Participants reported feelings of well-being and happiness that they’d truly missed, some for years.

For our Christmas meal insights, thanks must go to Sam Storey, our brilliant chef on the project, and to the team of researchers and survivors involved who together have worked to understand, and find ways to manage, the challenge of living with altered eating difficulties.

Resources for Living (R4L) Pilot: Exploring the Potential of Progressive Cuisine for Quality of Life Improvement for Head and Neck Cancer Survivors is funded by the National Institute for Health Research (NIHR) Research for Public Benefit (RfPB) programme.

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[i] Wells, M., 1998. The hidden experience of radiotherapy to the head and neck: a qualitative study of patients after completion of treatment. Journal of Advanced Nursing, 28(4), pp.840-848; Cousins, N., MacAulay, F., Lang, H., MacGillivray, S. and Wells, M., 2013. A systematic review of interventions for eating and drinking problems following treatment for head and neck cancer suggests a need to look beyond swallowing and trismus. Oral Oncology, 49(5), pp.387-400. 

[ii] Mouritsen, Ole G. "The science of taste." Flavour 4.1 (2015): 18.

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