Experts by Experience challenge us to create opportunities for them to take the lead in research

Posted by Ang Broadbridge (Research and Evaluation Lead) and Ged Hazlehurst (Expert by Experience) Fulfilling Lives Newcastle Gateshead

Earlier this year Fuse and Fulfilling Lives Newcastle Gateshead co-chaired a Quarterly Research Meeting sharing initial findings from a joint research project that explored the reasons underlying high death rates among people with multiple and complex needs (MCN). There we asked attendees to consider the findings and help shape recommendations.

Now as we write up the findings during the height of the Covid-19 pandemic, we are reminded that drug related deaths and MCN issues have been a public health crisis long before the pandemic, though it has drawn an even sharper focus on health inequalities at this time.

The findings from the study will be available in a forthcoming end of project report but in this blog we wanted to go behind the scenes with Experts by Experience to share our experiences of co-production in public health research.

Some background

So what is Fulfilling Lives Newcastle Gateshead (FLNG), and what are Experts by Experience? FLNG is an eight-year learning programme looking to improve the lives of people with complex needs and build a trauma-informed approach within the services that support people across Newcastle and Gateshead. Experts by Experience are people with lived experience of multiple and complex needs, and have vital things to say that can help shape the future of how systems and services work for their peers.

Co-producing research

Co-production is bringing together the people using services and the people providing those services to share power and work collectively to design, develop or deliver improvements to them. This also involves seeing services and staff as agents for change and seeing people who use services as assets with skills, who in turn, gain from their contributions and move towards positive change. For example, Experts by Experience on the FLNG programme have developed training resources for Department for Work & Pensions staff raising awareness of MCN issues, which were rolled out across JobCentre Plus.

FLNG wants research to be genuinely co-produced and has invested in creating a National Vocational Qualification accredited peer research skills training package and local Peer Research Network. This is to support a shift from involvement led by professionals to an approach in which peers define the remit and research questions, leading on all aspects of the research design, delivery and dissemination.

Experts by Experience defining research problems

The beauty of the Fulfilling Lives programme has been our small team and the small caseloads; with at the most eight frontline practitioners each working full time with just 10-12 people. We work intimately with these people, building strong trusting relationships, getting to know their families, and being by their side through crisis.

Between 2014 and 2020 we worked with 267 people, during which time we experienced 27 deaths on programme. That is around 10% of the client cohort, so you can perhaps imagine the impact of that 10% on a small team who have been deeply involved in the lives of the people they have navigated through services.

We talked to our Experts by Experience Network about this and as the programme research lead I (Ang) was really wary about the sensitive subject matter and its potential for re-traumatising. My thinking was challenged when the Experts Network were really passionate about deaths in their community and told us they were already talking about it, often without much support, so not to shy away. Then they challenged us to think about how our co-production and peer research offer could dig deeper to explore this issue. We asked Experts by Experience to help us explore what it would look like for them to take a peer-led approach to this work. They really helped shape the ethics process, for example they told us to look within their Network for participants, as we could guarantee good support for people to discuss any issues that emerged out of participation. In doing so they, the Experts by Experience, identified the topic for this project.

What was the feedback from our co-produced research event? 

When we met for the Fuse QRM the purpose of the session was to study the initial findings gathered from the series of focus groups we ran exploring MCN deaths. It was interesting then that the feedback we received from the event, asking people’s views on what we found and what was surprising, clustered around co-production in research. This suggests that this research has the potential to challenge beliefs about the involvement of people with lived experience in public health research:

• People were surprised by the extent to which Experts by Experience were able to take on such a difficult subject, and;
• People were surprised by the normalisation of death within our Expert by Experience community. 

It is our hope that this acts as a springboard for more and better involvement of people with lived experience of multiple and complex needs in public health research. We have explored a sensitive and challenging subject with Experts by Experience who challenged us to create opportunities for them to take the lead. We hope that as our Peer Research Network grows, other researchers can build on the peer research model we utilised in this study to shape their own research projects.

FLNG is one of twelve programmes linked across England funded by the National Lottery Community Fund, looking to influence the system nationally. A Core Partnership of Changing Lives (lead partner), Mental Health Concern and Oasis Community Housing lead the programme’s activity, for more information visit http://www.fulfillinglives-ng.org.uk/


Images courtesy of http://www.fulfillinglives-ng.org.uk

What’s a night out without a takeaway?

Ingrained & intertwined risky drinking & eating habits

Posted by Stephanie Scott, Senior Lecturer in Criminology & Sociology, Teesside University

A recent Fuse blog post reflected on the ways in which alcohol and food come together in the lives of young adults (Cassey Muir and Alice Graye ‘the booze, the binge and the bulge’). For example, some young adults may eat a takeaway after a night of drinking and a fry-up the next day, some may choose not to eat prior to drinking and some may drink alcohol alongside a meal. Such reflections are based on findings from the recently completed FOrwaRD project, a study that I have had heavy involvement in as a project applicant and lead researcher.

Yet, whilst the reflections of those on the cusp of adulthood are extremely important, one of the key messages from this project and an abundance of public health research evidence is that behaviours such as risky drinking and associated eating patterns become ingrained and intertwined in our lives long before we turn 18. In other words, health behaviours cluster in adolescence and track to adulthood. Think back. How long have you associated a beer with a curry or white wine with fish or, more bluntly, that going for a takeaway at the end of a night of heavy drinking is the norm? And, are these messages instilled in us during adolescence or perhaps even earlier in childhood? We also know that an unhealthy approach towards food and alcohol is more likely for some young people than others, particularly for alcohol, where we have seen a steady decline in the overall percentages of those who drink alcohol juxtaposed against those who do drink doing so at extremely high levels.

My point here is that, not only do eating and drinking behaviours interact, but the influences on these behaviours, such as parents, peers, marketing, urban space, also overlap, and overlap from an early age. Frankly, we eat and drink certain products for pleasure, for popularity or to socialise. One way in which to tackle a growth in obesogenic and alcohol-related harm is to explore overlapping and distinct influences on these behaviours at the point in which they accelerate i.e. late childhood / early adolescence and use this knowledge in the design of interventions which link rather than separate out such behaviours.

With this in mind, we set out (using Fuse pump prime funding) to identify and synthesise qualitative research evidence into common underlying factors which influence alcohol use and unhealthy eating behaviours amongst young people aged 10–17. This involved bringing together two separate bodies of literature to enable analysis and comparison across two associated fields of study. Thus, our synthesis involves the interpretation of individual studies by identification of second-order constructs (interpretations offered by the original researchers) and third-order constructs (development of new interpretations beyond those offered in individual studies) by way of the development of a ‘model structure’ of shared influences upon both unhealthy eating behaviours and alcohol use amongst young people aged 10–17.

Of the 63 studies included in the review, 27 studies focused on alcohol whereas 36 focused on eating behaviours. Initial analysis of the data identified 16 themes, 14 of which demonstrate shared or overlapping influences on young people’s alcohol use and eating behaviours. For example, we found that both alcohol and food were used by adolescents to overcome personal problems such as to relieve stress, to push away negative feelings or emotions and in some cases to replace human interaction: “…it’s a way like any other to forget or to let off steam, it depends on the person.” (Petrilli et al., 2014).

Whilst these findings are at an exceptionally early stage, one thing is clear – there remains very little research linking young people’s eating behaviours and alcohol use together. Hopefully, emerging publications from this review and the FOrwaRD project will help to lead this change.

With thanks to the core project team Louisa Ells, Emma Giles, Frances Hillier-Brown and Wafa Elamin.


Reference:

1. Enrico Petrilli, Franca Beccaria, Franco Prina & Sara Rolando (2014) Images of alcohol among Italian adolescents. Understanding their point of view, Drugs: Education, Prevention and Policy, 21:3, 211-220, DOI: 10.3109/09687637.2013.875128