lived experience

At times I have been hired for my ‘lived experience’, either as a carer for people with mental health problems or as a disabled person myself. I have also worked in research teams with people who have other kinds of ‘lived experience’, such as parenting children under five or living with addiction. I am not particularly keen on the phrase ‘lived experience’, because as far as I can tell all human experience is lived experience. I prefer ‘experts by experience’.

However, I also think the concept is flawed. Being an expert by experience is not like being an expert in domestic plumbing, or millinery or research ethics. For a start, the categories provided for experts by experience are incredibly broad. ‘Disability’ is a huge category. I am Autistic and I live with fibromyalgia and asthma. That qualifies me as an expert by experience – but I am no expert in the experiences of Deaf people, or stroke survivors, or people with Tourette’s syndrome, or many, many others. ‘Addiction’ is another huge category, covering street and pharmaceutical drugs, alcohol, shopping, sex and so on. Someone who is addicted to alcohol will not be an expert in the experiences of someone who is addicted to heroin or gambling. I could give you equivalent examples for mental health carers, the parents of young children, and any other category of ‘expert by experience’ you care to name.

Also, I often observe – and have experienced – experts by experience being required to subordinate their experience-based expertise to expertise conferred in other ways, such as through education or employment, and/or to organisational constraints. I have heard of situations where research ethics committees discounted expertise based on experience (which was no fun at all for the researchers concerned). And I have other forms of expertise myself, developed through education and employment; my experience shows that these are valued more highly than my expertise by experience. I earn more with them, for one thing. This all leads me to understand that expertise by experience is worth less than other forms of expertise.

I should also acknowledge that I have witnessed several situations where third sector organisations passed over a capable and qualified candidate to recruit an employee with lived experience. This might look like organisations valuing expertise from lived experience more highly than other forms of expertise, but in each case the story did not end well. Recruitment is one thing, retention is quite another. Recruiting someone who is not able to do the job, and then not providing the adaptations and support they need to become able to do the job, is a costly form of box-ticking. And I don’t mean only financial costs; failed employment leads to enormous emotional and mental health costs too.

Another thing I have observed – and not only post-recruitment – is much less support and development being available for experts by experience than for other kinds of experts. I have mentioned payment, which may be in the form of a voucher, or travel expenses and a sandwich lunch; once in a while a reasonable amount of actual money. Sometimes there is a helpful booklet or a little bit of training. I have never seen any sign of experts by experience being permitted, let alone encouraged, to develop other forms of expertise.

This is just one example of the ‘us and them’ aspect of experts by experience. In the early 2000s I did a lot of work with Sure Start, a New Labour initiative involving partnership working in areas of deprivation to provide multi-agency one-stop-shop support for parents and children under the age of five. My role was to support partnerships in their early stages so I spent a lot of time sitting around tables with groups including nursery educators, midwives, health visitors, Home-Start managers, and other such professionals. They would talk about ‘the parents’, meaning the people who would be using the services once they were set up. It felt very much as though they were othering their potential service users. I would ask, ‘How many of the people round this table are parents?’ Inevitably some were; often most. Then I would facilitate a discussion about how the lived experience of the parent-professionals could inform the work of the partnership. This made some of the professionals uncomfortable at times. I’m not sorry.

As a researcher, part of my job is to separate and categorise information to help me find useful links and patterns. But this separation and categorising work is temporary, for the purpose of discovery. Separating and categorising people is inevitable, at least for people using English because of how the language works – but this always carries the potential for othering. In my lived experience, experts by experience are often on the receiving end. It is not a pleasant place to be, when you are allowed to be involved so far and no further, when others always have the final say.

Everyone is an expert on something, whether that is cleaning a house or conducting an orchestra, plastering a wall or piloting a battleship. I wish experience-based expertise was valued as highly as education-based or employment-based expertise. I think it has every bit as much value and I hope, one day, this will be fully recognised.

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Note: This post was first published on the SRA blog in November 2021 and is reproduced here with the kind permission of the author and SRA.

In this blog post, Kimberley Neve, researcher at the Centre for Food Policy at City, University of London outlines different methods for capturing ‘lived experience’. Lived experience is the actual, specific ways in which people experience something, in this case food – access to food, food poverty, food quality, food allergies and many others. Kimberley and other researchers at the Centre for Food Policy specialising in qualitative methods have produced a Brief to give an overview of the range of methods you can use when researching people’s lived experience of ‘food environments’. Food environments are the space in which we make all our decisions about food – what to eat, where to buy it, when and with whom to eat it.

Using qualitative methods to influence policy

As researchers we want our work to have impact. We also want to know that it resonates with people and reflects not only the experiences of the research participants, but also of the general population in some way. For our research to have a positive impact, effective communication with policy-makers, both locally and nationally, is vital. Despite the potential of qualitative methods to inform policy that is effective and equitable for the people it is designed to help, the number of qualitative studies used as evidence for policy remains modest compared to quantitative studies.

We wanted to raise the profile of qualitative research methods among both policy-makers and food environment researchers by demonstrating the range of potential methods and their benefits (and drawbacks), with a focus on how using them can help inform policy. These methods can be utilised in a wide range of research areas – for example local transport, access to outdoor space or crime in local areas – providing in-depth insights into people’s lived experiences and practices that can explain how or why people act the way they do.

In our Centre for Food Policy Research Brief (the ‘Brief’) we initially mapped existing studies capturing the lived experience of food environments, categorising methods and relevant case studies. Following this, we consulted with members of our Community of Practice – experts in qualitative research and food environments – for feedback prior to final edits.

What are the qualitative methods you can use?

The Brief is not an exhaustive list of the qualitative methods available; however, we’ve tried to capture the main methods you can use. For the scope of the Brief, we didn’t include quantitative methods but of course recognise their vital role.

Often, combining quantitative and qualitative methods can yield the most valuable insights.

To make the overview as useful as possible, we categorised the methods in the following way:

Group 1 – Exploring experiences, perceptions, beliefs, practices and social networks;
Group 2 – Observing practices in situ;
Group 3 – Designing policy and interventions drawing on the lived experience of participants.

Which method should you use for your research?

Typically, you’ll be likely to benefit from combining methods to suit your research context. For example, visual methods and observation tend to be accompanied by individual or group interviews to provide a more in-depth exploration. In the full Brief you’ll find an overview of qualitative methods with the key benefits and potential limitations of each. Assuming you know all about individual interviews and focus group discussions already, here are a selection of other methods less frequently used in research projects.

Group 1: Visual methods

This includes photo elicitation, creative arts (where participants create artwork such as drawings, videos or theatre), concept mapping (pile sorting, ranking, mental mapping) and timelines. One study in the US used photo elicitation in urban neighbourhoods to identify community-level actions to improve urban environments in relation to health. The study allowed the researchers to identify that not all food outlets affected health in the same way, and that contextual factors such as crime and safety influence how people accessed food, which had implications for community-level policy.

PROS – Group 1 methods work particularly well with young participants or where there are language barriers, as views can be expressed more directly and simply. Participants may also be more willing to share information visually and images can provide insights that may not have been accessible via specific questioning.
CONS – Visual data can be difficult to interpret in a way that fully represents the participant perspective, and there is a potential for photographs to be seen as reflections of reality, rather than subjective perceptions that provide insights into reality. Participants could also misunderstand the objective and take photos that do not help to answer the research question.

Group 1: Geospatial methods

Geospatial methods often combine mapping with photography and/ or GPS to create visual data that can then be discussed in one-to-one interviews or focus group discussions for more insights. Methods include spatial mapping, geonarratives and geotagged photography. These methods are relatively new to the food environment literature; however they have been used very effectively to explore how people engage with their environment in general, for example in their green space encounters.

PROS – Similar to visual methods, geospatial methods can work well to engage participants in a way that is more creative and encourage them to share information more openly. They also allow for participants to share their knowledge as experts of their own food environments. These methods provide insightful data into the connections between space and place, particularly if combined with interviews or focus groups.
CONS – Geotagging requires specific technology that may be expensive and difficult to operate. There are also ethical considerations with mapping someone’s location – when and how this data is collected, stored and used are important factors to specify during the research design.

Group 2: Observation

This involves observing participant behaviour with methods such as go-along tours, transect walks and community group observation. Unlike with non-participant observation (below), the researcher talks to the participants during the activity about what their actions and interactions mean to them. For instance, during a go-along tour in a supermarket (shop-along), the researcher might ask for the thought process behind the decision to purchase a product. Transect walks are go-along tours with the addition of creating a map of the local food environment resources, constraints and opportunities.

In a UK study, go-along interviews were used to explore which changes to supermarket environments would support healthier food practices. A key insight from this research was that varied individual responses to the supermarket environment in low-income neighbourhoods are mediated by differing levels of individual agency. Interventions should include an emphasis on factors that increase agency in order to change how people buy food.

PROS – Insights into the practical aspects of daily life and routines can be captured interactively with the participant and explored in more detail with further questioning. Power imbalances in research are addressed as participants take more control of the research process.
CONS – The researcher’s presence may impact how participants behave or move around spaces, for instance by influencing what they buy in a shop-along tour. It is also quite time-intensive to organise and participate in.

Group 2: Non-participant observation

This is where participants are watched from a distance, for instance by video, with little or no interaction with the researcher. This method was used as part of a focused ethnographic study in Kenya along with interviews and cognitive mapping. The aim of the study was to inform policies for improving infant and young children’s nutrition practices. Among other insights, a key finding for policy was that future interventions must consider various aspects of food insecurity to improve conditions in practice.

PROS – You can get insights into ‘real’ individual actions, such as shopping or eating practices, without the researcher’s presence influencing the actions. Features of everyday life that may otherwise not be mentioned can be recorded and explored with further questioning. The researcher can also complete a log to provide contextual insights that can explain practices from a more objective viewpoint.
CONS – Observation alone, without a follow-up interview or discussion, means the researcher is unable to dig into the reasons underpinning the actions, so the interpretation of the situation can be subjective.

Group 3: Photovoice, co-design, co-creation, systems mapping, group model building

The third group of methods were particularly difficult to classify, as terminology and meanings often overlapped (for instance with co-creation and co-design). These methods place the participant at the centre of the research process and actively engage communities affected by policy decisions (at a neighbourhood, city, county, country level) in the research process. Participants are encouraged to draw on their own experiences, expertise and knowledge of their food environments to think about and propose change, so that policies resulting from the research are relevant and context-specific, and as a result have the potential to be more sustainable.

An example of effective group model building can be seen in a study in the US, where community-based workshops took place with a diverse group of chain and local food outlet owners, residents, neighbourhood organisations, and city agencies.Action ideas were discussed for interventions to promote healthy food access, including funding new stores that stock healthy food options and building the capacity for sourcing local produce in stores.

PROS – For all of the methods in Group 3, the ‘hands-on’ nature of research enables participants to generate information and share knowledge on their own terms. Outputs, such as policy recommendations, are created together with the participants to be effective in their local context following an in-depth research process.
CONS – These methods all run the risk of being perceived as tokenistic by participants if engagement is not meaningful and genuine.

In brief

Decisions about which methods to select to study live experience depend on the purpose of the study (i.e. guided by a specific research question), the local context, time and resources available, and the benefits and limitations of each method.Recently, the COVID-19 pandemic has accelerated the possibilities of using digital tools and technology as key facilitators for remote research.

As researchers, we not only need to engage participants and design research projects that will yield useful insights; we also have to translate our findings so that these insights can inform the design of effective and equitable policy. By using a range of methods, a more comprehensive and detailed overview can be communicated. Visual materials and stories are particularly effective ways for qualitative researchers to communicate their findings to policy-makers and make a refreshing addition to the more common interviews and focus groups.

Acknowledgements

This blog was written based on the work produced by all authors credited in the full Brief: ‘Understanding Lived Experience of Food Environments to Inform Policy: An Overview of Research Methods’

Author biography

Kimberley Neve is a Researcher at the Centre for Food Policy, City, University of London. She works as part of the Obesity Policy Research Unit, investigating people’s lived experiences of food environments to inform policy in areas such as infant feeding and weight management. Kimberley is a Registered Associate Nutritionist with a Masters in Global Public Health Nutrition.