Why is It Important to Ensure the Voice and Influence of People with Lived Experience in Social Work Research and Practice?

This Editorial is prepared by the Editorial Board members who have lived experience of social work and social care

In social work research and practice, the voice and influence of people with lived experience are crucial, as there is no one-size-fits-all process in the field of social work research and practice. Everyone is different: which could include their background, upbringing, values, perspectives, personalities, preferences, needs, culture, relationships and networks, health, environment and social surroundings. This is in addition to having to be aware of changes in the political and economic climate, and how this could add extra layers to how a person with lived experience must navigate the world which is always evolving and changing rapidly. They may need to adapt to new technologies or new legislation that also comes along too. So in social work research and practice, learning from different and diverse voices of lived experience allows social workers and researchers to understand complexities, as well as common themes, or to identify gaps in provision in social care that people may need. This may then help to influence partner or other organisations to assist in providing the best care for those with lived experience, which is right for them, and which sustains their positive well-being both now and in the future.

The lived experience voice and influence can also allow us to examine whether an improvement to our social work practice or research methods can be made, as we can always learn and reflect on our current models of thinking, behaviour and practice. We should not be afraid of taking risks or challenging the status quo that ‘we have always done things this way, so we should continue to do so in exactly the same way in future,’ if it is no longer of purpose, or realistic or possible when working with those with lived experience.

We can also identify if a specific research project needs to be undertaken to highlight topics challenging to deal with in social work practice, such as trauma, in order to raise awareness and an evidence base in order to help those with lived experience who do not feel their voice is heard, or if they feel marginalised, compared to other voices. This may then also provide awareness of the need for more future funding to such services by organisations such as the Government, healthcare, education services or local authorities, for example, where there may be a lack of provision, such as with the current shortage of affordable housing in the UK. When social workers and researchers actively listen to the narrative of a person with lived experience without any judgement, but with full empathy, respect and compassion, they are fundamentally helping them build their confidence to not feel ashamed of their life or circumstances that may have created the need for them to use social care or social workers.

Naheen Ali—lived experience adviso

In my own words

Kizzy Felstead, proudly multineurodivergent and differently abled

It is important to ensure the voice and influence of people with lived experience are present, heard, valued and supported to be part of meaningful change in social work research and practice. People with lived experience are experts in their lived experiences and are able to share their perspectives to bring an important level of meaning within experiences that social workers work with and are working to address and/or support. Too often, social workers and accompanying professionals are tasked with a debilitating power dynamic working with people often experiencing social disadvantage and may be at a low and/or difficult point in their lives. It is vital that approaches to supporting people to address life challenges are not led by ideas, knowledge and skills that have little meaning to the people with lived experience. Practice, and therefore the research that informs practice, must be meaningful to people with lived experience.

Knowledge from people with lived experience is not always considered in practice and research. Fricker (2017) would refer to this practice as epistemic injustice, which details the unfair treatment given in how we produce knowledge and make sense. This can be seen as exclusion, silencing, invisibility, having one’s meanings distorted, misheard, misrepresented, diminished in status, unfair power dynamics and being marginalised due to dysfunctional dynamics. Epistemic injustice is a clear and direct opposer of international social work values around promoting social justice, equality and empowerment (IFSW, 2018). Our aim should be to empower people to understand that they are the experts in their own lives, and we are tasked with understanding their world view, knowledge, beliefs and principles.

This difficulty is particularly faced by minoritised communities, such as racially minoritised people, and there is research happening around the specific experiences of this community, and there is deliberate exclusion of Indigenous and diaspora voices in social work research and practice. The lack of attention to lesser heard and deliberately silenced voices causes ethical and moral concerns, therefore highlighting the importance of listening and learning from people with lived experience throughout social work research and practice. Social workers and other professionals in social care must take notice and do those sharing lived experience the justice they deserve to feel included, heard, visible and represented, to ensure meaningful social work is practiced.

Omar Mohamed

Expert by Experience Activist, Children and Families Social Worker, Lecturer, and Researcher

Why is the voice of lived experience important in academia?—Moving from the informal to formal

‘Everyone has a story’

Sadly, usually after traumatic events such as the death of a child or neglect and abuse within care homes (adults and/or children) there is often a rath of inquiries, reviews of cases in which it is often said lessons will be learned when we know already in advance what some of those lessons are but they are inevitably repeated. On the other end of the spectrum, the voice of those who use or have used services has been used, for example, within conferences, tedtalk, etc, and in order to share their experience in the hope that those who hear them will take away learning or be motivated to do better. Higher Educational Institutions (HEI’s) have also attempted to develop relationships with those who have lived experience in order that they can contribute either directly to teaching or in the design of the development of social work programmes. All these areas need to be commended, and it is not to suggest that their different approaches are wrong or misplaced.

However, there are continuing barriers in relation to how the voices of lived experienced people are heard and the impact that those voices have on:

• Developing policy and design of future services

• Developing and forming social work education programmes

• Acknowledging that those who are care experienced also may be qualified social worker/social work students or other professional identities

• How the voice of lived experienced people is presented in relation to academic publication, rather than as part of someone else’s study or article.

Whilst not to bash those who have invited those with lived experience to conferences to motivate others by sharing their stories, as the impact may be very much be felt on the day but in terms of sustainability of impact and influence of it in making changes, such as developing and designing services it would be interesting to follow up with attendees three months later, to establish what difference did it make.

The means of engagement with those who have lived experience is and should always be questioned, especially in relation to purpose and impact. Therefore, this is an opportunity to reframe what impact will the voice of lived experience people bring to whatever situation you seek to have them contribute and if there is a need for that voice. (I would suggest that in order to address the bullet points above there is a continued need)

The intention to seek contributions of those with lived experience needs to be challenged at a range of different levels in order to ensure that the purpose, relevancy, reliability and integrity of those asking for contributors have been considered and that contributors are protected otherwise there is a risk of falling into the traps of ‘lesson will be learned’ or for them to be used as a means of a short-term shock impact and potentially unethical practices.

What is meaningful collaboration

The term meaningful collaboration could be understood as socially constructed, and there are many who have for a range of purposes have research, written and reflected on the complexities of how the voice of lived experiences is included (Sheppard, 2007; Jarmai and Vogel-Pöschl, 2020; Lucy, 2021). The focus on inclusion of the voices of lived experiences is not a new concept but one in which researchers have engaged with for many years, but this tended to be anonymised through data analysis. Similarly, through social work practice such as those mentioned above there have been a creation of initiatives such as champion boards and working groups such as ‘the promise’ led by those with lived experience.

So, what does the concept of meaningful collaboration mean? Within social work, there are very few concepts that are simple to define or agree on and meaningful collaboration therefore equal to a lot of other concepts in that there will be a range of ideas, definitions and applications, so I am not intending to challenge or create a new idea of what it means for anyone else. For me, it is quite simple meaningful collaboration the opportunity to affect change and influence. I accept that for others it may mean something else and that is okay. For me, meaningful collaboration is about a range of different things depending on the circumstances:

• that ability to influence the direction of travel by the utilisation of integrating skills, experience and knowledge, for example, of a research proposal, or

• to push and advocate for priorities of inclusion, for example, when considering widening participation recruitment of students to universities, by citing the lived experience of younger students at times can outweigh or at least equal to students with work experience to enhance their university applications.

• To challenge the status quo, for example, within social work, how we can at times have a one-dimensional view of people, they are service users or service providers, which fails to acknowledge that at some point over the course of our life span most if not all of us will come to be in touch with social work services in some shape or form whilst also being social workers, researchers, and academics.

There are so many opportunities to break down the barriers of including the voices of those with lived experiences, and I know that most of those who do contribute do so freely and without consideration of payment and any other reward. So, it is and should be the responsibility of those who seek to have their work enhanced by incorporating inclusive practices such as the experiences of those with lived experiences to ensure that they consider in the planning, caution or it can become meaningless, tokenistic or opportunistic and as mentioned earlier unethical. This is not to suggest a paternalistic approach to the inclusion of those with lived experience.

Equally those of us who regard ourselves as having lived experience and present our work, either in writing or in practice, and identify as being lived experience also have a responsibility in our role in developing meaningful collaborations. We need to be mindful that we don’t speak for the majority and that our work is open and should be analysed in relation the purpose, relevancy and reliability and integrity to the same level of scrutiny of those who seek our contributions. Being in residential care in the 1970s and 1980s in Scotland and speaking autorotate about my positive experiences being universal helps to showcase an example of this experience. It is important to recognise that my experiences are validated and recognised in national child abuse enquriies, although, this should not be constructed to quiten the voices of others, whose views and experiences may differ.

The benefits of meaningful collaborative sustainable strategies for the inclusion of lived experiences need to be shared and transparent from the outset, to ensure that those with lived experience are making informed choices and that their inclusion is evidenced in relation to the how the voices of those with lived experience have and will be incorporated, for example, within BJSW, the strong voice of those with lived experience has not just been set out with one purpose but layers of intentions, so, for example, to reviews articles and books with a lived experience lens, to offer different perspectives to the journals board and to encourage new writers and academics who have dual identities to be confident of their insider research identify (Berkovic et al., 2020).

Avril McIvor, University of Edinburgh

Yes, but how do we do justice to the appreciation of ‘lived experience’?

Lived experience is an unfolding feature of social interaction. Our worlds of experience and personal history are always mediated in discursive and social practices; they are ‘situated rhetorical accomplishments’ (Byford and Tileagă, 2017: 101) To do justice to these, we need to understand how accounts of experience can be interpreted and deconstructed in their own right. A discursive approach, which spans both language use and the social and cultural contexts in which our accounts are produced, can offer a much fuller appreciation of ‘lived experience’ than picking out themes, or more journalistic reporting can achieve. Lived experience calls for analytic methods that show how people orient (both individually and collectively) to their knowledge and stories as they interact..

People use a range of resources in the way they disclose, claim and describe their experiences and their lifeworld impact. For example, when survivors construct their accounts as valid, how they attend to their entitlement to the story as theirs and as part of their experience is an essential feature, and may demonstrate significant or novel sense-making practices that would be overlooked in more thematic analyses, in which interviewers create patterns by choosing features of content alone. The way a person may use a range of conversational resources such as tag questions, repair, laughter or transformative answers can denote their epistemic status on the experiences under discussion, including in comparison with the person they are speaking to. Intersubjectivity, a shared experience can also be denoted this way. Telling second stories exhibits ‘experiential matching’ (Heritage and Lindstrom, 1998). These aspects of interaction are key to understanding what experience means and should not be lost.

The central contribution that discursive psychology and conversation analysis can make to the appreciation of lived experience is to respecify it from a personal, or psychological notion, that is accessed via interviews, questionnaires, group events or written descriptions, to an empirical approach that treats experience as a matter for participants, and seeks to identify the resources they use to manage it. Social work literature has tended to draw on humanistic psychology and communication theory in which talk is introduced in idealised versions rather than live recordings and transcriptions of real events (De Montigny, 2018). To appreciate lived experience ‘in the wild’, a conversation analytic approach can show how people produce and make sense of their experiences themselves and the relevance of this for social work as a practice.

Dr Julie Wilkes

Lived versus living experience

This discrimination is alive. For too long they have referred to poverty as my lived experience. From the destitution of my council estate block, to the shop which is a desert of nutrition, to the bins that don’t get collected, to the systems designed to keep us where we are, to the bus that never shows up, to the £100 hidden in a tin can that represents a chance of getting away, to the lack of acknowledgement of single dads,¹ to the cooker from the homeless charity, to the electric being on emergency, to the pain that drips off us like an open wound wherever we go, this is what we are living.

I say this to express that there is a need to develop an understanding in research and practice that our experiences are not constrained to the past. They can be both lived and living.² Trauma can reoccur or still be occurring. Unfortunately, in my case there are multiple levels of inequality, all that reenforce each other and operate on an individual, community and structural level. It’s to the point where those succeeding in this world actively display a comfort towards not acknowledging the poor. But let that sink in. These actions of snobbery are rewarded by the power to exclude voices of the marginalised.³ For me, the term ‘lived’ suggests that we are now heard. That we aren’t purposefully being destroyed through continually intersecting barriers designed to capture our hopes on a daily basis.

I studied social work during the global Covid crisis whilst being served with notices seeking possession⁴ from the same council I was on placement for. I applied for hardship support from my university. This turned out to be a deeply invasive process with requirements around displaying how much Child Maintenance I pay for my daughter—a painfully mismanaged approach. This was during a time of absolute poverty, a time where we were facing homelessness and acute food insecurity. There were days I would be able to feed my daughter and just have her leftovers or nothing at all. It took someone from a council estate food desert to identify the lack of access to nutrition the young people in care were experiencing (Watters, 2021). There is something about adversity forming insight—as my backdrop of poverty undoubtably helped me to recognise this established lack of focus within social work. Through my Food is Care campaign⁵, I have gone on to locate gaps in policy frameworks and course curriculums.⁶

The university turned down my application for hardship support, and I was left thinking what should I do to make sure we survive. The same university now boasts a foodbank and proudly claims to be the first Right2Food university in the UK. The current posters advertising their cost-of-living £3 student meals leave me with a deep sense of injustice as I walk away. Although I welcome any efforts to support students, there is a fundamental lack of sincerity in this mission whose prime focus is about raising a university’s stature in a fast-developing competitive academic space, rather than supporting those marginalised communities just down the hill.

I am invited to their 2023 Eastern Arc conference.⁷ Sitting amongst experts in the field, the University’s Vice-Chair is invited to deliver the opening. To a widespread applause, she states that there should not be food deserts in the Garden of England. This is a bringing together of phrases I coined a year earlier in my 2022 article for the Food Foundation.⁸ It could be that in an eagerness to make progress in this area the input I’ve made has been overlooked. But when you are living the inequalities you write about, it hurts for the insights deriving from your personal experience not to be acknowledged. I find myself wanting to highlight the gratitude I hold for the opportunities I have been granted. However, there is something fundamentally wrong with relatively financially secure organisations benefiting from the work of the poor. It is something exploitative. But I guess this is an age-old story.

I am now working as a Newly Qualified Social Worker at the local authority. A local authority, who is my landlord, and who collaborates with the university on food security initiatives. This is the fifth most deprived area of the country, where they filmed Top Boy,⁹ and through my anti-oppressive approach I began to make a real difference in people’s lives. I had a monthly income. I was off Universal Credit. I didn’t have to hide the bills. I could top-up my gas & electric more than £20 at a time. We had petrol to go wherever we wanted. I even had the vision of being able to apply to buy mine and my daughter’s council flat after I had the six months of pay-slips.

An article was published in the New Statesman¹⁰ that featured an interview with me where I discuss the gaps in social work frameworks and practice around food insecurity and, even though this interview was done prior to my employment, it mentions that I am a social worker at Kent County Council (KCC). My Team Manager calls me into her office and tells me to hand over my card. She pulls up the article on the computer and says this represents a conflict of interest and may impact KCC’s reputation. I cannot understand how highlighting what we can do better for the most marginalised creates a conflict. Not only am I unemployed I am referred to the regulator for a review of my professional standing. This was a single-issue matter and thankfully it was found that there was no case to answer for.

I’m back in the jobcentre. I have designed a food insecurity module that is being delivered to Area Directors and frontline teams across the country. I am on the editorial board of Oxford University Press’s, British Journal of Social Work. I have a small but important hand in shaping the future of this profession—one I take seriously—but I cannot complete my Assessed and Supported Year in Employment (ASYE). Universal Credit sanctions me anytime I am not present when I am delivering the poverty-aware training. I am congratulated on influencing approaches to work with the most vulnerable on a national level. I am truly appreciative of the opportunities I get to speak up for the poor, but I need to say at what cost. They can and do legally discriminate against the poor all day. We have no protected characteristic.¹¹ Even after it all, I see the disdain to my words on their face. I see the hesitance to credit me for the concepts I have developed. I see the same people who questioned the source of my concept of ‘living experience’ (Watters, 2021: p. 5) nominated for social justice awards. I hear about the lived experience of poverty not being recognised at this year’s International Federation of Social Workers conference in Panama. But I find a level of freedom in hearing Kendrick Lamar say, ‘They Not Like Us’ (2024) as I walk back to my council estate block where me and my amazing daughter are living.

Through writing this piece, I find myself acknowledging the importance of what I have gone through. What I have lived. I would only say that ‘living experience’¹² stresses the need for urgent and uncomfortable communication to take place. I had not spoken about this before as I didn’t want to scare off future social work employers. I wanted there to be a chance for me to follow the conventional steps to work in a profession I have given so much to, but have also learned so much from. It is through social work that I found my voice. But I believed it when they said to advocate for the people you work with,¹³ to speak up against institutionalised injustices through promoting ethical practice.¹⁴ But if the injustice is council estate poverty, I can tell you there is no protection for us. I am just one of many living examples of this vulnerability but I do not want to come across as embittered. Instead, I can only pray that my words are an instrument of change, on some level, for the poorest in our society.¹⁵

Dominic Watters, @SingleDadSW

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