‘Is Gold Dust to My Mind’: Exploring Lived Experience in Social Work Education

Abstract

The involvement of people with lived experience (service participants) is mandatory within UK social work education, although the form this takes varies significantly between organisations. This article outlines the final phase of a two-year research project focused on understanding the mechanisms which support and develop the meaningful and sustainable involvement of people with lived experience in social work education within a Higher Education Institution and a Local Authority Teaching Partnership in the East of England. The research team worked collaboratively using co-production principles and possessed lived experience backgrounds. This article presents findings from a qualitative study using interviews and questionnaires that aimed to deepen understanding of the concept and practice of embedding lived experience in social work education. Thematic analysis identified a dedicated role with the motivation and drive to achieve sustained inclusion in creative ways was the underpinning of meaningful and sustainable lived experience involvement. This was alongside opportunities to shape diverse and relational learning experiences, values reflecting compassionate and respectful relationships, and power sharing, accompanied by practical resources, can create a culture change. Together, these principles, practices and values have been instrumental in creating meaningful and sustainable lived experience involvement within social work education.

Introduction

This article presents the final phase of a two-year research project that sought to understand the meaningful and sustainable involvement of people with lived experience in social work education in a Higher Education Institution (HEI) and a Local Authority which form part of a Teaching Partnership in the East of England. The discussion here presents the qualitative findings of the final part of this project. The context of the research, within an established Teaching Partnership is significant as it provided an infrastructure and commitment, including resource funding to increase the voices of people with lived experience within social work education and practice settings (Department of Education, 2019). This included the joint funding of a Citizen Involvement Co-ordinator (CIC) exclusively allocated to enhancing and developing lived experience involvement in social work education across both organisations. The CIC’s four main functions were (1) build capacity, diversity and maintain the network of lived experience; (2) develop and embed administrative processes; (3) build relationships within the community and raise the profile of people with lived experience within the Teaching Partnership and (4) develop and promote close liaison between service participants and stakeholders to promote mutual interest and understanding.

A principal investigator, the CIC, a senior lecturer and six Social Work Voices (SWV) co-researchers made up the research team. SWV is a group of individuals with lived experience and knowledge of social work and social care services. This network is embedded in social work education at both organisations and includes people with lived experience of mental health needs, disability, caring roles, domestic abuse, child abuse, child removal, care experience, addictions and more. SWV members will have frequently experienced marginalisation, injustice and power imbalances in some way. SWV seeks to redress the imbalance, through collectivising and supporting individuals to share their experiences and expand their skills and knowledge through accessing training. Lived experience involvement for SWV members takes the form of diverse opportunities such as contributing to learning and teaching of others, representation at Teaching Partnership strategic and operational boards, selection for course admissions and staff recruitment, skills and knowledge assessments, quality assurance processes and co-creating learning experiences.

Those involved in SWV and the research project hold multiple identities alongside lived experience backgrounds and as such, are not a homogenous group (McLaughlin, 2010). This multi-dimensional view of identity, as produced and negotiated between persons and institutions (Lawler, 2008) is a central tenet which drives and connects the research team in solidarity and understanding (Burk and Stets, 2009).

Language

Language used to describe people who access social work or social care services remains contested (McLaughlin, 2009). In a performative sense, language does not merely describe the world but constructs and constitutes social action (Butler, 1997). With this lens, ‘user’ has been replaced by ‘participant’ as the term preferred by SWV members. We utilise the terms service participant and person with lived experience interchangeably. ‘Service user’ has long been a problematic term linked to a political agenda and the onset of managerialism in the 1990s (Heffernan, 2005). ‘Service participant’ is gradually being adopted in both organisations involved in this research and it was generated by SWV members to take account of personal agency, the principles of personalisation, partnership (Care Act, 2014) and power sharing and reciprocity within definitions of co-production (SCIE, 2022).

The research context

Background

All four UK countries are required to involve service participants in the design and delivery of social work education (Dill et al., 2016). The form that this involvement takes varies significantly between institutions (SCIE, 2004; Robinson and Webber, 2013). As a fundamental aspect of social work education (SWE, 2020), lived experience is at the forefront of many Teaching Partnerships’ agendas (Berry-Lound et al., 2016). Although there is a long history of lived experience in social work education (Robinson and Webber, 2013), it is well understood that involvement has typically been an add-on or tokenistic in nature and Levy et al. (2016) go as far as to say a culture has emerged whereby service participant involvement has become a mechanism for sustaining consumerist and procedural hegemonic discourse, as part of a neoliberal project. In a similar vein, Radoux (2022) warns against the fetishisation of lived experience, whereby experts by experience are homogenised and can be set up to fail, coming away bruised and disappointed by organisations who over-promise the holy grail of involvement. Radoux (2022) also refers to the potential for power, or the proximity to power, to corrupt and service participants having to curtail and tone down their views to maintain their place in the organisation.

At the same time, there is also a growing recognition of the value of lived experience and the difference involvement can bring to social work education if done effectively (Levy et al., 2016; Fox, 2022; Lonbay et al., 2022). To develop a clearer appreciation of the effectiveness of involvement of service participants in social work education across the two organisations, the project team developed a two-phase scoping exercise to understand different stakeholders’ experiences of meaningful and sustained involvement through in-depth exploration using a qualitative approach.

The first phase of the project was completed in 2020 as a scoping exercise (Howells et al., 2020) to ascertain where the Teaching Partnership was situated in terms of lived experience involvement in social work education, whilst establishing the parameters for the next phase. This part of the project was initially led by HEI staff and involved SWV members in distinct aspects of the research. The first phase recognised that involvement was often influenced by the personal initiative and capacity of academics, alongside beliefs about the limitations of SWV members’ involvement, with implications of tokenism.

Research design

Research approach

A culture change model which resonated well with the project design is Kurt Lewin’s (1947 cited in Schein, 1996) three stage model; ‘unfreezing, change and refreezing’. The first stage can be linked to ‘unfreezing’ beliefs in an organisation through events that generate readiness and motivation to change. The first scoping exercise could be considered one such event along with communications and service participant representation at different fora.

The second stage ‘change’ is through role-modelling and establishing new behaviours and beliefs. This stage was demonstrated through the application of co-production principles and practices (Conquer, 2021) within the second phase of the research project, which closely aligned with the objectives and ethos of the Teaching Partnership (Suffolk and Norfolk Social Work Teaching Partnership, 2022). Examples were listening to understand SWV members’ experiences, fears and hopes, collectivising and power sharing, supporting service participants to conceptualise, shape and plan involvement activities and change terminology (as previously mentioned). The third stage of the model, ‘refreezing’, is where new culture is reinforced and stability achieved. Lewin’s (1947) change model’s simplicity is perhaps both a strength and a limitation (Hussain et al., 2018; Burnes, 2020) yet what it offers is a potential way of making change dynamics more understandable, manageable and sustainable once embedded.

Co-researcher involvement

A rationale to co-produce this second phase of the research project, involving HEI staff and SWV members as collaborative partners with equitable decision-making and control (Trivedi and Wykes, 2002) was reflected in Oliver et al.’s (2019) four arguments for co-production to be political, substantive, instrumental and normative. The first argument involved alignment with social work’s commitment to social justice as a defining value, to redress the power imbalance of people who are marginalised and powerless (political). Historically excluded from knowledge generation and ‘conventional research’, service participants’ increased control of knowledge production challenged norms (Redman et al., 2021) and magnified tensions about what is considered legitimate knowledge and whose voice is heard. The second reason was understanding that service participant perspectives offered richer research (substantive), with potentially more meaningful findings (Szmukler et al., 2011) and greater impact (instrumental). Beresford (2003) challenges issues of ‘distance’ and ‘neutrality’ between the researcher and researched. Instead, value is seen in the experiential and insight was drawn from lived expertise, highlighting collaborative engagement as ‘of intrinsic value’ (Conklin et al., 2015, p. 153) (normative).

There are, however, challenges inherent in co-production with the benefits contested (Turnhout et al., 2020) and risks being exploitative (Essén et al., 2016). The gap between the principles of co-production and practice can also be difficult to navigate (Loeffler and Bovaird, 2016; Farr et al., 2021). The involvement of people with lived experience in research is inherently about relationships which raises questions regarding power, ethics and the perceived credibility of research findings (Cossar and Neil, 2015). Challenges include how co-production in research can also cause misunderstandings, conflict and consume resources (Oliver et al., 2019). However, working through the conflicts that arise can be highly beneficial in the longer term (Mouffe, 2013). For this project, the challenges included individuals’ differing starting points in understanding research and building confidence and trust, particularly where historically members may have been disempowered. Consequently, research training built confidence and enhanced research skills of the SWV co-researchers in the research process, ethics, data collection and analysis.

Research question

The purpose of this study was to explore the following research question aimed at illuminating different stakeholder perspectives: ‘What are your experiences of service participant involvement and the ways in which this involvement is meaningful and can be sustained in social work education across the HEI and Local Authority Teaching Partnership?’

Methodology and methods

This two-year exploratory project used a qualitative methodology, to build greater insight and understanding of people’s experiences and perspectives, which came through the depth and detail of their words and meanings (Bryman, 2016). The study involved the following data collection methods:

1. Anonymised SWV Member questionnaire asking about lived experience involvement in social work education.

2. Anonymised student/apprentice or Newly Qualified Social Worker (NQSW) questionnaire drawing on the student/NQSW experience of lived experience involvement in social work education.

3. Semi-structured interviews with university academics to explore lived experience involvement within teaching.

4. Semi-structured interviews with local authority professionals to explore lived experience within education for qualified social workers.

All interviews were conducted via Microsoft Teams, recorded and transcribed, and methods piloted.

Having experienced unequal positions with a range of institutions, the research team did not wish to reproduce existing power imbalances and strove to disrupt power hierarchies wherever possible within the project including through the data collection methods. As such, qualitative methods used open-ended questions, where the emphasis remained on the participant being listened to and was seen as empowering within the interview researcher–participant relationship. Although the qualitative questionnaire is an under-utilised tool, it was a good ‘fit’ for the research question and population, allowing an anonymous mode of data collection and which delivered rich, deep and complex data (Braun et al., 2021).

The process of reflexivity was embedded through the research process to align with the quality criteria within qualitative research (Stenfors et al., 2020). An example of this involved post-interview debriefs between the SWV co-researchers and the first or second authors acknowledging feelings and recognising complexities with positionality (Muhammad et al., 2015) as a person with lived experience and researcher. Reflective discussions also took place during the analysis stages about the SWV co-researcher role and the relationship with research participants.

Ethics

Ethical approval was granted by a university’s Research Ethics Committee. The project was underpinned by the UK Policy Framework for Health and Social Care Research (NHS Health Research Authority, 2020) to ensure a sound ethical culture was created and maintained. To ensure transparency and impartiality, the research team included an academic not embedded within the SWV network who possessed both research and lived experience. SWV co-researchers controlled decisions throughout the project process from design, implementation and analysis and contributed to enhancing the credibility, rigor and accountability within the project.

Sampling

A purposive sampling technique was used from a population of student social workers and apprentices, NQSWs, the wider network of SWV, social work academics and practitioners. These different specialist perspectives were identified to yield the richest information. From the sample population, participation was self-identified and voluntary, resulting in six participant semi-structured interviews. There was a 33 per cent (n = 29) response rate for the anonymised qualitative student/apprentice questionnaire and 45 per cent response rate for the qualitative anonymised SWV member survey (n = 5). The NQSW questionnaire received a lower response rate of 15 per cent (n = 4).

Data analysis

Following the phases of thematic analysis (Braun and Clarke, 2022), SWV co-researchers immersed themselves through reading and re-reading the interview transcripts and making notes of ideas and insights. The first and second author did the same across all of the interviews. Next, the SWV co-researchers with the support of the first and second author coded the interview transcripts into smaller segments through the use of code labels. These code labels were input into a Microsoft Word table capturing SWV co-researchers’ analytic take on the data, along with columns detailing excerpts from the transcripts and identification of interview participant 1–6. In parallel, the first and second author completed analysis through these phases for the questionnaire responses. This created a list of codes to capture the analysis across the interviews and questionnaires. Then, clusters of codes which identified shared patterns and meanings were constructed into initial themes. The development and review of themes involved checking that the theme made sense across the full data-set in relation to the research question. This involved ensuring that each theme included a code, or cluster of codes which repeated across at least three interview participants and the questionnaires. Consequently, each theme included excerpts across the data-sets and were selected for richness and vividness (Eldh et al., 2020). Each SWV co-researcher was provided with an opportunity to review and revise the theme for relevancy. This integrative approach to analysis supported a move beyond simplistic, binary perspectives where layers of different interpretations were considered (Gillard et al., 2012).

Findings

Several themes were interpreted through the data analysis which were distilled to three key themes: the nuts and bolts holding it together; diverse and relational learning opportunities and the past, the present and the future.

The nuts and bolts holding it together

The data suggested that there was no blueprint for lived experience involvement and it would differ depending on the context and people involved. As a starting point, a culture of lived experience at the centre of social work education required an openness to change and practical remedies, underpinned by a dedicated role. Research participants described that for lived experience to flourish within social work education, there was a need for commitment to social work values, effective communication, strong and respectful relationships and clarity of pathways. Commitment came through a variety of ways, including rethinking how resources were used and securing additional funding. Responses indicated strong unified value-base involved principals of social justice, partnership, reciprocity and support, as the following quotes indicate,

But what is the service participant getting out of this as well? Because this is that two-way process, it is not just about the education and the support for social workers … . we can discuss any skills development or confidence development that might help somebody to be involved, if maybe we want involvement, but like say, the IT might be a barrier or something else [we] must be able to work through that. (Interview Participant 2)

Because I’m a social worker, I absolutely believe in social justice, partnership and collaboration … I think what I’m saying, it’s a values thing for me. (Interview Participant 4)

Practical solutions involving clear communication and listening pathways were also considered imperative. Many of the comments overwhelmingly suggested that the implementation of a dedicated role, the CIC, was the single most important factor for meaningful and sustainable lived experience involvement. However, it was not just the role that changed the way things happened, but also the personal qualities, experience, training and qualifications of the individual,

It’s very difficult to know when we look at a role like this, whether it’s the role or if it’s a person doing the role. So obviously the person that’s doing the role has just done some incredible things. Because of who they are and the drive that they bring. (Interview Participant 1)

The CIC’s enthusiasm and determination and the respect she has for the group and each and every member of that group … she’s remarkable, but she’s just pulled all those kinds of strings together. (Interview Participant 3)

Focusing solely on lived experience along with the absence of competing academic demands made it possible for the CIC to develop a level of professional intimacy where service participants’ strengths, concerns, hopes and dreams were identified and thoughtfully matched to opportunities. The CIC took time to build and maintain individual relationships, as well as developed strong allegiances across the network. Personal qualities involved being approachable, person-centred, honest and a champion of lived experience. This made SWV members feel safe and secure that their voices were truly being heard and responded to, which allowed them to operate at their best. On the ground support came through morale boosting, confidence building, being a sounding board and acting as both a ‘critical friend’ and providing technical support.

To operationalise lived experience involvement between organisations and service participants, the CIC provided a bridge between the different groups’ needs and helped to overcome obstacles, creating channels of communication.

It’s a role we embarked on jointly with the university and the local authority, and what has really helped is, I was very keen as I said earlier, that the involvement of people with lived experience didn’t just sit with the university, so students didn’t just get that when they were in the classroom. (Interview Participant 1)

For me, I think it’s been really good to have the coordination. And I think that has developed the Social Work Voices profile much broader. (Interview Participant 5)

This meant that the role evolved from administrative tasks and co-ordination, to include outreach, pastoral care and raising awareness of lived experience in the locality and beyond, evidencing scope and reach,

One of the big changes is that we are thinking about it more. (Interview Participant 1)

I know [the CIC] is Suffolk, but really Norfolk are benefiting from her expertise as well and I suppose she is becoming a central point for the partnership. (Interview Participant 6)

In essence, research participants were clear that it was not solely about having a dedicated role for lived experience involvement to become more meaningful and sustainable; it was also important how this role was executed and the personal qualities of the role holder. Moving beyond practical tasks to something more visionary, the role was fundamentally relationship based on how people felt valued. The role straddled both organisations and research participants highlighted that it was a channel of communication. It emerged that for the changes that were required and lived experience to fulfil its promise for the large part, depended on the CIC role.

Diverse and relational learning opportunities

People with lived experience and particularly, the SWV members, were perceived as the beating heart of social work education, breathing life into learning opportunities and humanising the curriculum across the two organisations. Changes in beliefs about what people with lived experience could bring were sustained through diversified and relational learning opportunities. Providing real-life, contemporary and on the ground perspectives, members provided first-hand accounts of what life was really like. This included the messiness, the seldom heard and the uncomfortable. This level of honesty and ‘telling it like it is’ were felt to be ‘eye opening’ and supported and challenged many participants’ learning and practice, and brought theory to life,

I rely a lot on social work voices members to bring me back to reality. (Interview Participant 5)

It allows for real voices of people to be heard, as academics are not always aware of what is going on. (Student/Apprentice Participant 10)

I find it very useful to learn from the real-life experiences of people who have had social work involvement to make my practice as good as it can be—I find that it makes me more person centred. (NQSW Participant 4)

Responses suggested that depending on the position of the learner, service participant involvement encouraged a rethinking of reality or a shared reality, either of which could contribute towards creating more meaningful experiences. Although sharing experiences may not be enough on their own to know what people want or need, these processes served relational functions. They influenced the reframing of a situation, as well as engagement in complexity and deeper order thinking which at times can be difficult to teach and as such created valuable learning experiences.

Many research participants also highlighted that despite having multiple identities and insight, academic and professional staff members were unable to offer or replicate for learners, what people with lived experience bring.

For me, well there is nothing else. There is nothing better. You can’t substitute it. You can’t pretend it … You’ve got the service participant as the expert on this account, on these occasions, and I think that’s a wonderful thing. (Interview Participant 3)

It doesn’t matter what I say to anybody if they hear it from [people with lived experience], then that’s true factual lived-in experience that they’re listening to, and it really does make a difference … to have that as a student going into placement is gold dust to my mind. (Interview Participant 2)

Hearing their breadth of experiences within social care and social workers has really had an impact on how I want to practice once qualified. (Student/Apprentice Participant 20)

Numerous comments related to investment, experimentation and creativity which were needed to show the value of lived experience, where involvement went beyond the rhetoric of participation and engagement, and was ‘meaningful’ in the truest sense of the word (and action). The CIC was instrumental inspiring and co-ordinating this. Research participants shared ways of achieving this through the two organisations involved championing people with lived experience and creating opportunities where members were seen as trailblazers within their field, which opened up new areas of involvement.

I couldn’t imagine the future without them because they are pretty much delivering quite a lot of the active communication, so you know web, podcasting. They’re engaging in reaching out and developing the communities. (Interview Participant 6)

We have social work voices in ASYE programmes, coming into student hubs and making a video for one of our core training programmes … without the joined up nature it all could get very disjointed. (Interview Participant 1)

As such, this not only led to members’ upskilling and expanding their capabilities, but it had a knock-on effect of strengthening the entire community of SWV, with members becoming more adaptive and innovative. Underpinning this, the HEI and local authority appeared to be more joined up and united in their ethos of understanding lived experience involvement as a collaborative endeavour, rather than through mandated compliance. Consequently, this close partnership created a conduit, managed and co-ordinated through the CIC’s role, for creative and new methods of involvement to materialise, such as podcasting, facilitating student learning hubs in the community, web writing and supporting NQSWs in their first year of employment.

I think before that it was ad hoc is the term I’d use, probably ad hoc whereas now it’s almost like this pool of riches. (Interview Participant 3)

That’s the fragility of the funding. I think we all know what it’s like. You’re grateful for the opportunity, but it has a shelf life. Cultures change and leaders change and decision makers change and we go through this loop where we say ‘let’s fund this, this is a great idea’, and then I’ve been there before where you start to get somewhere, but then the funding disappears. (Interview Participant 2)

However, there was a sense that innovations such as these often come and go, or occurred as one-offs, perhaps because the day-to-day mandatory requirements of the course and the ‘business’ of social work take precedence over other considerations. This suggested that for involvement to become meaningful and sustainable, there was a need to deconstruct the existing culture of lived experience involvement across the two organisations. This took place through reconstructing the depth and breadth of involvement activities with the support and influence of the CIC. In line with Lewin’s model (1947 cited in Schein, 1996), this change came about after the first stage of the research, along with new behaviours and beliefs about what SWV members could bring.

Building on this further, ideas of reflexivity and relational learning emerged. Relationships were of central importance amongst the SWV network and between stakeholders, where caring about what happened in people’s lives mattered. This suggested that for lived experience to thrive, not just survive, a move beyond increasing networks of mutual support was required, to include a sense of compassion based on trust and valuing others’ experiences.

The challenge of ensuring that you have been really mindful of the well-being of the person that’s being asked to contribute to those programmes as well, and what it might trigger … I worry that we ask the same people all the time. And put a lot of pressure on them … So, to be able to have that level of empathy … you know ‘cause for me any of that work where a professional is working with somebody … it’s the relationship that’s really important’. (Interview Participant 1)

A relationship with service participants, which is about respect, relationship-based practice, being respectful and non-judgmental. (Interview Participant 3)

Because if you’re developing relationships and you’re working with people who mistrust services for a whole host of reasons, then you need to develop trust. (Interview Participant 4)

The past, the present and the future

Research participants considered the recent past, present and future of involvement in relation to power sharing and control, a change in their status and recognition and representation at different fora.

I think we’re on the edge of something, at the beginning of something that can really transform the outlook, the practice, our thinking and our behaviour. (Interview Participant 2)

Research participants indicated that social work education across the organisations was on the cusp of shifting to something more meaningful and sustainable in relation to lived experience involvement than had existed previously. Involvement required people’s commitment and investment of time, energy and resources. Responses included the need to move beyond historic tokenism, and towards involvement that was truly meaningful, an objective of the Teaching Partnership (Department of Education, 2019). Ways that were suggested to achieve this included further representation of what people with lived experience could offer,

And I think to begin with there was an element of tokenism which is from a perspective that as an organisation for decades now, I’d say periodically you go to meetings and people would say, ‘Oh well, we need service participants involved. We need to involve our clients and our customers’. And everyone would sort of be rattling the sabre saying that, but nothing would happen really. (Interview Participant 2)

Where once, involvement was seen as an add-on or more of an informal activity, there was also a suggestion around further formalisation of the role of people with lived experience,

They’re just service participants now having a status. These are Social Work Voices. These are people with lived experiences who are contributing to our programme. (Interview Participant 3)

What we want to get to the point of, is that this isn’t an add on. This isn’t something that we’re just testing, but it becomes if you like that, that ‘business as usual’ phrase that this is what happens all the time. This is not unusual and you know we’re developing that voice and understanding how it can support what it means because we’ve not done it before. (Interview Participant 2)

Responses shared that SWV members were perceived to possess increased status, as legitimate representatives, compared with that which they held previously across the two organisations.

But now we’ve got Social Work Voices as a named group. With who you know, I’m hoping are getting their status, being honoured and respected, along with everybody else …. It’s not just this, you know rabble of people who roll up every so often and offer this and then disappear again. It’s actually elevated the group. (Interview Participant 3)

Responses indicated that a language change led to a status change, from the perception as ‘rabble’ to become a legitimate voice with legitimate power. Further considerations of legitimacy were thoughtfully addressed by research participants, ensuring legitimacy arose through establishing collaborative partnership structures rather than afforded by those in positions of power. Research participants shared that this was one way to support sustainability,

I don’t know if this is so much the role being developed, it’s more, I’m just thinking about a kind of sustainability and you know, even if that role carries on and carries on and carries on. It’s how Social Work Voices is better to be in a more autonomous group. (Interview Participant 1)

However, SWV’s lack of diversity suggested that some voices remained excluded potentially undermining the extent of involvement with a lack of diverse perspectives, particularly from people of the global majorities which was also identified as a limitation of the research,

So I think for me the biggest barrier is ideas about accessibility, really. So, and it’s when you talk about the university some people can feel incredibly intimidating … . I think there’s absolutely something around ethnicity there. Again, about how we are reaching out to our diverse communities and what that means and what that looks like. (Interview Participant 4)

In parallel, embedding lived experience involvement within the ethos of both organisations diversified ways of working where challenges were embraced instead of feared,

Some real positive challenge to our team in terms of thinking about and exploring co-production in the truest sense of the word. (Interview Participant 4)

Research participants described two examples supported by the CIC—planning and feedback. Firstly, planning and shaping activities with service participants from the outset in the design of learning opportunities supported a shift from top-down to a more bottom-up approach.

I think for me it’s about having that involvement being meaningful rather than just tokenism … that involvement has to be meaningful and it needs to be planned so that the service participant voice can be part of that planning process. (Interview Participant 5)

I would say that it’s increasing. I would more than happily have more and there will be more, but it’s about the planning what things might look like and then get into a deeper understanding of where the service participant involvement could be increased, not just doing it for the sake of numbers. (Interview Participant 3)

Secondly, many research participants (with the exception of the SWV participants) raised that feedback from people with lived experience resonated differently in quality and impact, and that the opportunity to learn from the relationship changed once the context of formal education ended.

Students need to be able to take criticism and utilize that criticism in a constructive way. So, I think that’s quite healthy from my perspective, and though it sometimes makes the students a bit uncomfortable, it’s good on a number of levels. It’s good in regard to practice and to managing themselves in difficult situations, but it is also good academically because they need to have that feedback to learn where their strengths are and where their weaknesses are. (Interview Participant 5)

As illustrated above, the research participant was empowered to create a learning experience that was challenging and discomforting to the learner, an experience which would be unlikely to happen in practice where the transaction is determined by power, positionality and context.

For SWV members, there was a clear delineation between how they felt two years ago to now. Within the organisations, in large part due to the CIC, there was better communication, changes in understanding and a willingness to include lived experience, which meant for SWV members there was a renewed sense of purpose and inspiration about what could happen, and that service participants’ time was valued, as illustrated in the following excerpt:

My lived experience is valued and I can help others. (SWV Participant 1)

There are opportunities offered in a wide range of areas … and I am paid!!! (SWV Participant 3)

This change in thinking also flowed through to positive changes for academics, practitioners and consequently, impacted people they worked alongside, potentially achieving better outcomes,

I am now listening more to the clients rather than their families and professionals in the first instance to really understand their needs and wishes. Making my assessments truly person centred. (NQSW Participant 3)

We’ve gone down the route of harnessing the talent we have and embedding and sustaining all those good, all that great stuff, you know, and changing the culture slightly rather than, let’s use it as a booking shop front window for selling our skills. (Interview Participant 6)

Looking to the future, interview participants shared ideas around how the network could be expanded or become more autonomous, with additional roles for people with lived experience within the different organisations and involvement in conceptualising and planning learning opportunities, creative experiential learning, Continuing Professional Development and service participant consultation in casework analysis.

I mean certainly in terms of social work itself. Yeah, that to me, is beginning to end. So, you have for example, Level 3 courses at college and sixth forms. So, that’s where that should begin, service participant involvement. They should also be on those programs. Then you’ve got your three years of undergraduate training. Thereafter the students and apprentices are in the real world of social work. (Interview Participant 3)

In essence, research participants described lived experience involvement as a journey for all involved in the process, with the current SWV network being inspired by what might be possible for future involvement, given the right climate, support and investment, all of which contribute towards its future sustainability.

Discussion

This section is framed around the third stage of Lewin’s (1947 cited in Schein 1996) three-stage culture change model focusing on the third stage ‘refreezing’, where the new culture is reinforced and stability is achieved.

In the UK, evidence for lived experience as a form of education innovation and the benefits involvement brings are widespread in the canon of social work education literature (Anghel and Ramon, 2009; Stanley and Webber, 2022). However, in the context of lived experience as a mandated requirement in social work education, collaborations can be fragile (Dreissens et al., 2018) and organisations insincere in their commitment. Radoux (2022) warns against the homogenisation and fetishisation of lived experience and Levy et al. (2016) point to the distortion of lived experience in a neoliberal context and the need to be outcomes focused. In large part, this research has shown that implementing a dedicated CIC role goes some way to consider both of these points.

What came out of the research was that having a platform to champion achievements was not enough on its own in terms of sustainability. Findings were consistent with literature that there is movement on from involvement, to people having a more equal and power sharing role (SCIE, 2019). To achieve this required strong leadership, a shared vision and extensive coordination through a dedicated role. The CIC held responsibility to manage both the strategic vision and the day-to-day lived experience matters (CFE Research, 2020, p. 3), whilst implementing a shift in culture and ethos. Put simply, the CIC was a lived experience ‘one-stop shop’ who was able to understand service participant perspectives, co-ordinate matters and inspire the network without being clouded by academic bureaucratic demands. Although the research outlined that having a dedicated role and the way in which the role was executed was significant, what the role embodied was less straightforward. Described by the researchers as similar to ‘gold dust’, the detail is a recommended area of further research.

Findings suggested that involvement of people with lived experience needed to move beyond a one-off activity to become part of daily practice and involvement operating at different levels across the organisations to move beyond superficial participation. This required a flexibility of power and control within relationships and a move away from lived experience consultation and existing concepts of involvement, towards and inclusive of ideas of citizen control (Arnstein, 1969). Arnstein’s (1969) Ladder of Citizen Participation is frequently used within the co-production literature, reinforcing that increased control is synonymous with a transfer of power and is critical to moving beyond the ‘safe ground’ of consultation (McLaughlin, 2010, p. 1597) to true co-production. Drawing on co-production practice and principles of power sharing and partnership, planning was seen to inform culture change and sustainability.

The findings also suggested that to create valuable and sustained lived experience involvement, diverse and relational learning opportunities were needed. Looking towards embracing new ways of working could ensure that diversifying learning and teaching strategies would mean that the network was abreast of any changes in social work education. The findings also echoed praxis; the connections between theory and practice, where learning derived from lived experience providing a link with the ‘real world’, an aspect often found across social work education (Irvine et al., 2015; Duffy et al., 2021). It is well regarded that relationships are intrinsic to best practice (Trevithick, 2003; Ruch et al., 2010; Hollinrake et al., 2019) and the change process rightly leans towards the person with the lived experience’s circumstances. However, this research highlighted how learning occurred in a nuanced and symbiotic manner determined by the context. It was suggested that feedback from people with lived experience resonated differently and changed beyond the formal educational context into practice where positionality and power shifted. Notably, feedback within any learning relationship induces valuable learning across social work education however, there appeared to be a gap in how this translated within social work education with qualified practitioners.

Finally, the findings highlighted that formalisation of the person with lived experience role could both create meaningful and sustainable involvement. However, this status and its proximity to power (Radoux, 2022) have links to professionalisation of the role which presents tensions with the values, rationale and political origins of user movements (Beresford, 2002; Pilgrim, 2005). Harnessing the lived experience through diverse formalised approaches has become increasingly mainstream in mental health services (see Bradstreet, 2006; Näslund et al., 2020), but perhaps, given inherent power differentials and the paternalistic nature within statutory services and social work education, there are still challenges to be overcome. However, for this research, formalising the role was driven by lived experience members and given the principles of power sharing, building trust and reciprocity through involvement, this idea of formalisation appeared to gain traction within the organisations.

Limitations

A limitation was the poor response rate to the questionnaire which targeted NQSWs (15 per cent), which may not convey the full picture of lived experience involvement in social work education post qualification. A further limitation was the lack of representation of people of global majorities.

Conclusion

This article set out to understand the mechanisms which support the meaningful and sustainable involvement of people with lived experience in social work education across two organisations in a Teaching Partnership. Drawing on Lewin’s (1947 cited in Schein, 1996) culture change model, the findings have found that for lived experience to flourish, involvement needed to move beyond consultation and tokenism, and required dedicated resources and leadership, to facilitate channels of communication and culture change. This commitment came about through a variety of ways, yet the implementation and execution of the CIC role was the single most important factor for meaningful and sustainable lived experience involvement. Underpinning this were values which moved beyond mutual support and embodied respectful and compassionate relationships, to truly care about what happens in people’s lives along with power sharing principles. Opportunities for increased, diverse and relational ways of shaping and delivering learning activities resulted in a change in behaviours and beliefs about what people with lived experience bring to the social work education process. Two practical examples were provided in the findings assisted by the CIC; planning and feedback processes which organisations could adopt in future. The research also highlighted the significance of the CIC supporting organisations to examine, reconceptualise and reconstruct learning activities with investment, experimentation and creativity.

Finally, considerations to formalise the person with lived experience role also accounted for power sharing principles, building trust and reciprocity. Although it is not without tensions and challenges within social work education, this mechanism was driven by service participants and supported by a collaborative partnership structure as one important way to establish and bring about changes to education and practice.

Acknowledgements

The research team would like to thank the students, apprentices, academics and professionals who gave their time freely and whose responses helped in completing this project. We also give a special thanks to our ‘critical friends’, Dr Sue Hollinrake and Professor Jo Finch who provided insight and reassurance which we truly appreciated. Most importantly, we would like to thank the service participants of SWV, including those trained as co-researchers. Without whom, this project would not have been possible.

Funding

The authors received no financial support for the research, authorship and/or publication of this article. SWV co-researchers were paid for any time that was dedicated to this research project from the relevant university/local authority budget.

References