Lived experience research: A guide to the barriers and facilitators from a service user’s perspective

In this article, Dr Ben Gray (a Research Ambassador and Service User Researcher at Healthwatch Essex who has schizophrenia and Asperger’s syndrome – also referred to as Autism) describes the barriers and facilitators to successful lived experience research, service user involvement and co-production. Ben has over 20 years of experience as a service user researcher. This comes at a time when Patient and Public Involvement (PPI) and service user involvement are required in research proposals, research funding bids and broader and more inclusive research projects and methods/ methodologies. This article should also help and guide other service users who are involved or considering becoming involved in lived experience/ service user research.

The barriers and facilitators noted here are not exhaustive or complete but offer a guide to the main issues that might be encountered by service user researchers.

A service user perspective

People with mental health problems, like me, can find life daunting, isolating, disturbing, confusing, and even threatening. People can feel excluded and left behind, in general life, education, employment and by research in health and social care. I, myself, have high anxiety in new situations and sometimes panic attacks. I have problems reading people’s non-verbal behaviour and talking with more than one person. The medication I am on can make me feel very tired, lethargic, passive, and even zombie-like. Bullying at school, in particular, made me feel different, stigmatised and socially excluded. I have also heard voices with a hellish and demonic quality, saying: “You’re going down there!!” and “On the bonfire with him!”. Too often, people can withdraw into themselves and be cut off from others and society, living life on the margins and being stigmatised. People can become passive, docile, a shell, almost zombie-like and feel that they do not matter and are not valued. My experiences, and the experiences of other people with mental health problems and/or are neurodivergent or have a learning disability, make a very strong case for involving people, in all aspects of life, education, employment and in research.?

I wrote this paper to describe the value that people living with mental health problems can bring to research and how it can make them feel listened to, given a voice, valued, heard, involved, and accepted.

Barriers

Science vs. Experience

There is a tendency to split and binarise scientific knowledge vs expertise by experience. This can undervalue people’s expertise by experience. There is a hierarchy of scientific knowledge (greater) vs experience (lesser) in research and academia. This binary is similar to that of objective vs. subjective and quantitative vs. qualitative. In fact, these binaries can help, support and complement each other. Scientific knowledge can be complemented and improved by the insight of lived experience. Scientific knowledge vs. experience can be best considered via what I call the Everest metaphor: “a scientist can tell you how high mount Everest is (30,000ft). But they can’t tell you what it’s like to climb to the mountaintop. That takes experience”.

In addition, there is the scientific dominance of the medical model and research on the effectiveness of powerful antipsychotic drugs (but which also downplays side-effects). This is a research bias that is particularly dominant in systematic reviews of randomised controlled trials (RCTs). One service user I knew compared this to being in “a medical and chemical prison” while another more strident service user called it “a psychiatric hegemony” (which means a dominant and coercive view or belief system). Once again, psychiatric science (medication) contrasts dramatically vs. experience and the service user perspective to reduce, avoid or come off antipsychotics.

Employment

Several emails for employment in research acknowledging lived experience of schizophrenia and Asperger’s have not been answered. It is hard finding employers with disability and often no career ladder. People are afraid of mental illness, which is stigmatised, and often pay less.

Tokenism

Service user involvement, in bad cases, can just be lip service and tokenistic. At a conference I attended one delegate said that service user involvement was just something unimportant and a meaningless hoop to jump through, like a tick box exercise. I responded that it brings an extra dimension to research that otherwise it would lack, and he thought about this and agreed.

Being side-lined

Some of the more contentious findings using lived experience research are often downplayed or side-lined. Lived experience research is too and there is the need to commission and engage more lived experience research.

Confidentiality

People can be worried that confidential or personal information may be inadvertently made public. Standard data protection should be followed and anonymised.

Illness

People with mental health problems can become unwell. It is important not to push people who are unstable or unwell to attend focus groups, interviews and the like, as this may cause a critical downturn in their health and is against ethical protocols for engaging service users. A good way to ensure attendance is to have a reservoir of participants. For example, in an advisory panel I co-ordinated there were 8-12 people in a development group, but I had another 30 in a main panel to call upon if required. It is a good idea to book in several interviews in a day in case of any drop out.

Stereotypes of mental illness

People, including researchers, can have negative stereotypes of mental illness. For instance, that they are dangerous or a risk. One researcher I worked with said she was afraid at her first interview with a service user but was reassured when I told her that this was a stereotype. I offered to sit in with her.

It is also important to avoid stereotypical and psychiatrised language when talking with and engaging participants and to be particularly avoided when writing-up findings.

Facilitators

Reasonable adjustments

People who take part that have health or social care conditions will often require reasonable adjustments. Reasonable adjustments are vague and may vary between individuals and groups. For example, I have a phobia of presentations because of voices at focus groups and problems reading people’s verbal and non-verbal behaviour. I was helped in presentations and focus groups by my line manager, who chaired meetings for me. I was once psychotic on a train to London. The adjustment was to work mainly from home, apart from a service user advisory panel where I felt comfortable. There is a need for a standardised reasonable adjustment card that is noticeable to staff and easily readable (i.e., it answers key questions regarding accommodation requirements and preferences). Similar cards have been used to enable the homeless population to access primary care services.

Institutional commitment

Healthwatch Essex are good at lived experience and co-production research. I have been able to use my schizophrenia and Asperger’s in analysis and writing up. There needs to be an institutional commitment and high profile given to service user involvement and PPI. Healthwatch Essex have encouraged PPI by engaging Research Ambassadors, Health Ambassadors and Learning Disability Research Ambassadors.

The value of participation

On a positive note, recruitment and getting people involved in lived experience research and co-production is a big draw as they are inclusive, involving, and democratic. They can be emotionally rewarding, philanthropic and make people feel that they are making a difference. People are also more fully included so feel more valued and accepted.

Belonging to a team

People with mental health problems can feel excluded and even stigmatised, in general life, education, employment and also research.?People need to feel that they belong. I have been made to feel involved and valued by the team at Healthwatch Essex, Samantha Glover (Chief Executive Officer), Dr Kate Mahoney (Research Manager) and Dr Tom Kerridge (former Senior Research Officer) who lead the way and encourage lived experience research and co-production.

Workload

The team promoted the best level of research involvement in what I have termed the ‘goldilocks zone’: not too much work (which might be stressful), not too little work (which might make you feel not fully involved), but just the right amount of work (finding the best balance, facilitating good involvement and the best conditions for co-production).

Making a difference in the lives of service users

The work was enjoyable and I felt valued, involved and gently encouraged to share my lived experience. I felt engaged in an important and worthwhile project that makes a difference in the lives of people. People said I would never work again because of my learning disabilities and mental health problems. But I was able to analyse transcripts and write up findings from a lived experience perspective. This enabled me to believe in myself more and recognise the value that I can bring to others, especially people with shared experiences of learning disabilities and mental health problems.

Emotional engagement and emotional intelligence

I was also able to draw on my previous work experience as a Support Worker for people with learning disabilities and my younger brother, Jack, who has severe learning disabilities and autism. I was able to use my emotional intelligence as a carer and sibling to bring to research themes and recommendations. Jack is unable to talk or care for himself. He will curl into a ball at noise or people he does not know. He will also scratch and bite when frightened, angry or frustrated. My emotional intelligence as his sibling engendered recommendations for quiet waiting areas/ sensory rooms and the empathy and compassion of nurses, health staff and care workers.

Involving people equally

There needs to be ‘active listening’, rapport between participants and time for each individual to talk so that everyone has a say.

Remuneration

As much as possible, it is important to pay people for their time and effort. Vouchers are a good reward for people who are unemployed or on benefits. Budgeting should be factored in for lived experience research and service user involvement.

Sensitivity

Mental health issues can be challenging, difficult and very upsetting. One carer described how she found her son trying to cut his throat while another helped her daughter off a drug addiction. Sensitivity and space for people to communicate feelings of fear, grief, suicide, and illness are required to accurately portray the experiences of service users.

Conclusion

The above facilitators and barriers to lived experience research and service user involvement offer a guide or map for others engaged or contemplating becoming involved in user- focused methods and research.

Although many barriers remain there has been a shift towards inclusivity and involvement in recent years. Certainly, more could be done by institutions to overcome these barriers and increase lived experience research. Leading organisations such as the Department of Health and Social Care, Healthwatch Essex, Rethink Mental Illness and Mind lead the way on service user involvement. Health and social care services also now run Lived Experience Advisory Groups to better inform their services and people’s experiences of them. A balance of perspectives should always be sought between science and experience.