Exploring the Impact of Lived Experience Contributions to Social Work and Healthcare Programmes: A Scoping Review

Abstract

The integration of lived experience educators (LEEs) in social work and healthcare educational programmes has evolved to recognise its potential to enhance learning, empathy and professional development among students. This scoping review explores the level of LEEs’ engagement in academic models and the different perspectives of LEEs, academic staff and students on lived experience education, analysing both the merits and challenges of this pedagogical approach. A systematic search was conducted across multiple academic databases and identified 37 articles on lived experience education. Arnstein’s Ladder of Citizen Participation was used as an evaluation tool to assess the levels of engagement described in the studies. The common themes across studies were analysed and synthesised for each perspective of the stakeholders. The findings of this review evidence that while lived-experience-led education enhances students’ performance, the depth of participation of LEEs varies widely. The ladder-level analysis found that many educational programmes are designed at the higher rungs of “co-production”, where LEEs collaborate equally with academics. However, some practices are at the lower rungs of “tokenism”, where LEEs are consulted but have limited decision-making power. This may be due to challenges such as a lack of structured support systems, emotional labour for LEEs and inconsistencies in practice. Therefore, greater efforts are needed to move beyond tokenistic involvement towards meaningful co-production in education for people-centred services. By embedding lived experience contributions, education becomes a synergistic practice, continuously shaping and enriching the professional development of both students and the communities they serve.

1. Introduction

The contribution of individuals who have faced diverse health, disability and social care challenges is essential to informing the professional development of health and social care professionals. Involvement forms a key element of many educational programmes and is mandated by many professional regulatory bodies across all aspects of learning and teaching. Lived experience experts share their expertise with students about the nature of the services and support they have received, which can enable students to understand the perspectives of people with lived experiences.

Over the past few decades, the involvement of individuals with lived experiences in educational programmes for social work, psychology and other healthcare professional groups have gained global prominence. This approach to learning and teaching shapes the knowledge, skills and abilities of the pre-qualifying, early-career and post-qualifying students by enabling an understanding of the perspectives of service recipients. Such approaches incorporate many different practical roles in teaching, including role-plays, case studies, advisory groups and research practice (Classen et al. 2021).

In the UK, the involvement of experts by experience (EbE) in social work and healthcare education has significantly evolved since the 1980s, initially supported by initiatives such as the King’s Fund (King-Owen 2020; Seale 2015). The recent widespread adoption of the involvement of lived experience experts in education reflects growing recognition of its value in improving empathy, understanding and effectiveness of care delivery (Parnell et al. 2023). The integration of lived experience in teaching and learning initially benefited health and social care professionals, particularly in settings where peer-led service providers played a role in improving service delivery and ensuring outcomes aligned with the needs of service recipients (Horgan et al. 2021). Over time, the role of lived experience educators has expanded beyond direct service provision to active contribution in teaching across diverse professional disciplines, including mental health nursing, social work, occupational therapy and other healthcare services (Fox 2020; Kim and Chun 2022; Sapru et al. 2024; Scanlan et al. 2022; Tilley and Taylor 2013). Experiential learning environments that reflect real-world scenarios enable students to recontextualise theoretical knowledge, thereby enhancing the transfer of learning into professional practice (Campbell 2008; Radović et al. 2023). Moreover, critical reflection is a core element of educational practice gained through experiential learning; it enables students to analyse and internalise lived experiences within the framework of academic concepts, enabling connections between theory and practice (Skilton 2011). This method also contributes to moral and ethical professional development by offering opportunities for students to view people’s perspectives and reflect on these values (Campbell 2008). Although there are expert-by-experience-led education has prominent benefits, it is argued that some aspects of lived experience involvement must be further developed to increase the credibility of lived experience contributions (Scanlan et al. 2022; Speed et al. 2012).

Various terms are used to refer to people who serve education with lived experience, including service user and carer involvement (SUCI), expert by experience (EbE), lived experience educator (LEE) and lived experience academia (LEA) (Classen et al. 2021; Dorozenko et al. 2016; Fox 2020). However, with evolving language preferences advocated by the LEE team, this article adopts the term lived experience educators (LEEs) instead of “service users and carers” to represent a commitment to respect the people with lived experience and promote inclusive and collaborative education. Beyond terminology, the level of lived experience involvement in academia also differs significantly. There exists a non-formative approach in the level of LEE involvement from only being involved in interview sessions to being equally engaged in university admissions processes to select students (Nursing and Midwifery Council 2023). This variability in involvement can create power dynamics not only between disciplines but also within interdisciplinary contexts. Additionally, as people accessing services have diverse experiences and backgrounds, the contributions vary, leading to disruption in the balance of the learning practice. Despite these shortcomings, people accessing services also face challenges such as limited contextual knowledge, insufficient preparation, a lack of recognition, limited motivation from peers and restrictions on involvement, all of which can lead to inconsistencies and reduced intervention effectiveness (Speed et al. 2012).

Recently, involvement has evolved through co-production, informed decision-making, equal partnerships and risk management (Department of Health 2010). Co-production in this context refers to collaborative efforts to improve educational processes by integrating the lived experiences of people who benefit from services into curriculum development, teaching and assessment. Policies have also been developed to support lived experience involvement and co-production, resulting in the wide adoption of this educational approach across different sectors (Hatton 2017). Some universities have systematically embedded lived experience education into their curricula by forming advisory groups of people interested in contributing at an academic level. However, to expand the application of lived experience education across a wider range of sectors, it is essential to understand the involvement of people with lived experience in diverse healthcare and social work educational settings, with the associated benefits and challenges. Even though previous literature reviews focused on this area, they have been mostly subject-specific, like either social work education or nursing or mental healthcare (Scammell et al. 2015). Therefore, this review aims to critically evaluate the distinct roles of people with lived experience in social work healthcare and allied healthcare education and identify factors that influence the effectiveness of the practice. To critically assess and categorise the level of involvement of LEEs in different educational sectors, this study also draws upon Arnstein’s original Ladder of Citizen Participation, a seminal framework that conceptualises levels of citizen involvement and power (Arnstein 1969). The framework was later republished after refinements following some critiques and limitations identified about the initial framework; a major concern was that it may oversimplify the participatory processes by imposing clear-cut divisions that fail to mirror real-life complexities (Arnstein 2019; Carpentier 2018; Willness et al. 2023). This study remains grounded in the original concepts because this ladder still serves as a valuable tool for providing a structured overview or superficial ranking of public participation and power dynamics.

This review is guided by addressing the following review questions developed using the PICO (Population, Intervention, Comparison, and Outcome) framework:

• How are people with lived experience involved in teaching health, allied health and social care students in education?
• What are the particular elements that support/hinder effective practice?
• What are the common factors that support student learning across diverse course deliveries?

The purpose is to provide a scoping review of the literature on lived experience involvement in health and social care education. This review focuses on how LEEs are engaged in educational interventions across different schools and what necessary improvements are required to enhance the effectiveness of this learning experience.

2. Methodology

This study adopts a scoping review methodology rather than a systematic review, as it aims to explore the depth and nature of lived experience involvement in social work and healthcare education, rather than evaluate the quality or effectiveness of specific methods involved. As recommended by Arksey and O’Malley (2005), scoping reviews are appropriate for works where the evidence is heterogeneous, and the aim is to explore the conceptual boundaries and inform future research for practice development. Using the PICO framework, a comprehensive search strategy was developed (

Table 1. The PICO strategy and search terms used in the review (* represents as a wildcard in search terms).

Population	Intervention	Comparison
Nurs * OR Nurs * students OR Preregistered nurs * OR General nurs * OR Student nurs * OR Nurs * education OR Scrub nurs *   Physiotherapy OR PIER OR physiotherapy students OR lived experience OR physio * OR physiotherapy education OR physiotherapy teaching OR physical therapist   Occupational therapist OR Allied health * OR Occupational health OR occupational teaching OR occupational education   Mental health * OR mental health education OR mental health students OR mental health teaching OR psychology * OR psychology teaching OR behavioural therapy   Social work education OR Social work teaching OR Social work curriculum OR Social work training OR Health and Social Care	PaCT session OR Patient as coach team OR Service user * OR User involvement OR Evidence-based learning OR Patients’ experience OR Patients’ perspective Carer * OR Lived experience * OR PPI OR Public involvement OR Expert-by-education OR Patient-led education OR service delivery	-

). This scoping review was not registered but followed the steps outlined in the PRISMA ScR checklist. Figure 1 presents the PRISMA flowchart, detailing the steps involved in the article selection process. The database search was conducted on platforms including CINAHL, MEDLINE, ProQuest and ScienceDirect using the developed search terms in combination according to the category. To comprehensively cover the topic of lived experience education within social care and healthcare programmes, an extensive search was conducted across four main categories: 1. social work, 2. nursing and midwifery, 3. nursing and mental health education and 4. allied health sciences. A total of 677 articles were identified through the database search. All these articles underwent title and abstract screening, and the selected articles were stored in RefWorks reference management software. Duplicate screening was also conducted, and repeated articles were excluded.

As this review was designed as a small-scale pedagogical study, a formal critical appraisal of each article was not undertaken. However, stringent inclusion and exclusion criteria were applied to check the relevance and appropriateness of the selected literature. The inclusion criteria required that papers must be academic journal articles, should describe a learning model involving lived experience or summarise its effectiveness, and should explain the importance and challenges of lived experience education. The exclusion criteria ruled out papers that included simulation-based practices without the involvement of lived experience educators, focused on educational models supporting patients and their families, discussed educational strategies based on the lived experiences of students and nursing practitioners, were structured as review articles or conference proceedings, or had repeated themes or models already discussed in other papers focused on the benefits of lived experience education. The selected papers were closely monitored and cross-verified by another reviewer. After full-text reviewing by applying the inclusion and exclusion criteria, a total of 37 articles were included in the review.

3. Results

The 37 articles included in the review were critically evaluated, and a structured literature database was created with the following categories:

• Title: Title of the study.
• Citation: Author and referencing details.
• Country: The country where the study was conducted.
• Objective: The purpose of the study and how it aligns with lived experience education.
• Methodology: The type of research methodology used, including the sample and its size.
• Viewpoint: Perspectives from which outcomes were derived.
• Data Collection: Methods used to collect data from participants and the types of analysis conducted.
• Type of Contribution: Roles and involvement of LEE participants in educational programmes; the structure of the educational model used.
• Key Themes/Findings: Main findings and themes derived from each paper, along with coded data and statistical points.
• Limitations: Limitations of each paper after critical analysis.
• Author Notes: Important notes and considerations for specific papers.

The findings critically summarised from the data sources were grouped using Arnstein’s Ladder of Participation framework. Arnstein’s Ladder represents levels of empowerment in ascending order, defining the distribution of power within participation groups. The ladder is categorised into three main degrees: (a) non-participation, which includes manipulation (level 1) and therapy (level 2); (b) degrees of tokenism, comprising informing (level 3), consultation (level 4) and placation (level 5); and (c) degrees of citizen power, consisting of partnership (level 6) and citizen control (level 7). Figure 2 presents the Ladder of Citizen Participation by Arnstein (1969). Based on these levels, the involvement of lived experience educators in this review was scored, and a narrative description of their contributions was drafted separately for each subject area included in the review. Additionally, a narrative synthesis was developed to capture the perspectives of students, LEEs and academics on the inclusion of lived experience educators in academic modules. This review identified 20 studies addressing the viewpoints of students, 15 studies addressing the viewpoints of people with lived experiences, 8 studies regarding academics’ perspectives and 5 studies representing the combined perspectives. This synthesis provides theoretical and existing evidence on the current state of lived experience education practice across various disciplines and the associated benefits and challenges. Furthermore, the data synthesis draws on studies not only from the UK but also from Australia, Turkey, the United States, New Zealand and several European countries, providing a broader international perspective.

3.1. Involvement of Lived Experience Educators

Among the 37 articles reviewed, 11 focused on social work education, 10 on nursing and midwifery practice, 10 specifically on mental health nursing and 6 on allied health sciences education, including physiotherapy and occupational therapy. However, four of these papers did not explicitly detail the type of contribution made by LEEs. Consequently, these papers were excluded from the synthesis of LEE involvement and the evaluation of their placement on Arnstein’s ladder of participation. The incorporation of lived experience into academic modules varied across subject areas and was tailored to meet specific academic needs.

3.1.1. Social Work Education

LEEs are actively involved in teaching sessions through activities such as question-and-answer panels and role-play scenarios (Fox 2022). Similarly, Skilton (2011) at Kingston University highlighted that people with lived experience assessed social work students’ readiness to practice by conducting simulated interviews. Lived experience educators in social care also played significant roles in assessment sessions, providing feedback to students. Fox et al. (2021) described how people with lived experience and carers acted as both actors and assessors in role-play tasks, offering feedback on students’ critical thinking skills. Skilton (2011) further emphasised the importance of lived experience educators’ contributions in assessing students’ engagement and reflective practice skills.

In addition to these teaching and assessment roles, people with lived experience and carers were integrated into co-developing course content. Fox (2022) and Allain et al. (2006) described their involvement in designing communication skills videos and contributing to curriculum development. Following this, their practice of involvement extended to decision-making in the admission process by evaluating prospective students’ capacity and evaluating written tests.

Moreover, specific teaching models have further standardised and enhanced SUCI involvement in social care modules. For example, Levy et al. (2019) detailed a 15 h community care module that fostered co-creation, including contributions to policy-related practice questions and feedback on teaching methodologies. Similarly, the “gap-mending” strategies of the PowerUs network, as outlined by Askheim et al. (2019), emphasised mutual empowerment and collaboration through joint courses where LEEs and students engaged as peers.

3.1.2. Nursing and Midwifery Education

In nursing and midwifery, the modules were developed collaboratively with lived experience educators, particularly in teaching, programme development and curriculum design (Atwal et al. 2018; Davis and McIntosh 2005). These collaborations were undertaken in various ways, including buddy systems where LEEs were paired with academic staff (Terry 2013), simulated patient scenarios, and role-play assessments (Atwal et al. 2018; Davis and McIntosh 2005; Garner et al. 2022; Kim and Chun 2022). Shifrin and Cook (2021) described a clinical educational intervention that involved ICU patients and family members, providing real-life perspectives on pre- and post-hospitalisation outcomes to Adult Gerontology Acute Care Nurse Practitioner (AGACNP) students. Similarly, the PIER (Parents in Education and Research) partnership approach, as demonstrated by Warren et al. (2017), utilised a “we go to them” method to directly involve parents in midwifery teaching sessions. This approach incorporated storytelling, audio recordings, short films and podcasts to enrich learning experiences.

Additionally, Rhodes (2013) conducted a case study that highlighted the long-term benefits of engaging nursing LEEs in direct narrations and clinical assessments. The study reported positive impacts on resilience, coping mechanisms and professional relationships among students even one year after their clinical practice. These examples show the diverse levels of lived experience involvement in nursing and midwifery education, showcasing their contributions to clinical nursing education and the potential for long-term impacts on professional practice.

3.1.3. Nursing and Mental Health Education

Following the contributions of LEEs in the field of nursing education, they have also been consistently involved in direct teaching to reflect patient-centred care in mental health nursing (Feijoo-Cid et al. 2022; Kuti and Houghton 2019). For example, the Patient as Coach Team (PaCT) programme implemented at Bolton University utilised service users and carers (SUCs) as educators in small-group workshops designed around the “6 Cs” of nursing: care, compassion, competence, courage, commitment and communication.

Additionally, LEEs have played active roles in curriculum development for mental health nursing and student assessment processes through interactions in clinical practice (Feijoo-Cid et al. 2022; O’Donnell and Gormley 2013; Speers 2008). Furthermore, various teaching models specific to mental health nursing have been employed to enhance student learning. For instance, Enquiry-Based Learning (EBL) models included in-person sessions where LEEs shared lived experiences, followed by small-group discussions centred on enquiry (Rush and Barker 2006). The University of Nottingham’s School of Nursing implemented collaborative education models that provided equal partnerships between educators and LEEs (Collier and Stickley 2010). Similarly, Schreur et al. (2015) described participatory role reversals, which encouraged students to look beyond the “them and us” dichotomy and adopt a more empathetic and inclusive perspective.

These patient-centred teaching models and the involvement of lived experience educators demonstrate their significant contributions to improving the practical learning experiences of mental health nursing students. By incorporating diverse and collaborative educational practices, mental health nursing programmes not only improve student engagement but also promote the integration of patient-centred care principles into clinical practice.

3.1.4. Allied Health Sciences Education

The review identified two physiotherapy papers, two occupational therapy papers, and one general medical education paper that discussed the involvement of LEEs in their modules. The level of involvement in teaching varied across studies, ranging from workshops and resources like the Online Narrative Archive, co-produced by universities and patient network organisations (Powell et al. 2013), to co-teaching models with hierarchical lesson plans designed for different levels of learning (Thomson and Hilton 2012, 2013). LEEs were also involved in co-producing curricula, planning workshops and creating study materials (Thomson and Hilton 2012, 2013; Yalon-Chamovitz et al. 2017). Additionally, they also contributed to assessing student work, including poster presentations, debates, fieldwork reflections and professional dilemmas. The implications of LEE involvement extend beyond social care, nursing and allied health sciences to medical education. In medical education, engagement levels ranged from passive participation, such as serving as subjects in clinical examinations, to active participation in teaching, assessment and curriculum development (Rees et al. 2007).

4. Discussion

4.1. Levels of Participation Across the Disciplines

As the involvement and contributions of LEE in educational contexts continue to progress across various disciplinary areas, it is essential to understand the differences in participation levels between these disciplines to inform further advancements. To provide a comprehensive view of participation rankings across subject areas, this study utilised Arnstein’s (1969) Ladder of Citizen Participation as an evaluative framework. This model foregrounds the dynamics of power and participation levels of LEEs, enables a systematic comparison across studies and informs recommendations to advance towards higher levels of engagement. This approach builds on the work of Willness et al. (2023), who applied Arnstein’s ladder in the context of community-engaged teaching. It emphasises the value of Arnstein’s categorisation in assessing the depth of community member involvement in curriculum development and execution.

Table 2. Ladder level rating with rationale for articles in the review.

Author and Year	Ladder of Participation Score	Score Reasoning	Subject Area
Fox (2022)	7—Delegated power	Involved in teaching, curriculum and assessments Had the power to evaluate prospective students	Social work
Davis and McIntosh (2005)	7—Delegated power	Included in curriculum, selection, monitoring Involved in all levels of the organisation	Midwifery
Moran et al. (2024)	7—Delegated power	Co-designed/delivered trauma-informed teaching Held authority in critical aspects	Social work
Fox et al. (2021)	6—Partnership	Co-produced module content Lacked full delegated power or citizen control	Social work
Skilton (2011)	6—Partnership	Proposed as equal partners in curriculum creation Indicated shared-decision progress	Social work
O’Donnell and Gormley (2013)	6—Partnership	Proposed as equal partners in curriculum creation Indicated shared-decision progress	Nursing and mental health
Feijoo-Cid et al. (2022)	6—Partnership	Proposed as equal partners in curriculum creation Indicated shared-decision progress	Nursing and mental health
Speers (2008)	6—Partnership	Shared decision-making role in delivery Did not have complete power	Nursing and mental health
Rush and Barker (2006)	6—Partnership	Active engagement in the learning process Acted as partners in the programme	Nursing and mental health
Collier and Stickley (2010)	6—Partnership	Significant power and shared responsibility Represented strong collaboration with educators	Nursing and mental health
Atwal et al. (2018)	6—Partnership	Co-taught with academic staff Contributed to planning, delivery and evaluation	Nursing
Owen (2021)	6—Partnership	Co-produced curriculum and workshops Involved in delivery	Nursing and mental health
Horgan et al. (2021)	6—Partnership	Equal partners from concept to analysis Contributed to feedback and outcomes	Nursing and mental health
Garner et al. (2022)	6—Partnership	Equal partners with students and staff Collaborative involvement across education	Nursing
Terry (2013)	6—Partnership	Partnerships at some universities like UCLan Barriers (tokenism, resources) restricted power	Nursing
Powell et al. (2013)	6—Partnership	Collaboration and training showed partnership No full control over content delivery	Physiotherapy
Scanlan et al. (2022)	6—Partnership	Co-designed and co-delivered workshops Input influenced outcomes meaningfully	Occupational therapy
Yalon-Chamovitz et al. (2017)	6—Partnership	Co-designed and co-delivered workshops Input influenced outcomes meaningfully	Occupational therapy
Askheim et al. (2019)	6—Partnership	Co-created knowledge and experiences Involved in educational decisions	Social work
Levy et al. (2019)	6—Partnership	Co-constructed narratives and research Taught alongside academics	Social work
Allain et al. (2006)	6—Partnership	Initially tokenistic involvement Later co-created study materials	Social work
Driessens et al. (2019)	6—Partnership	Co-delivered modules and research Contributed to design and outcomes	Social work
Duddington et al. (2023)	6—Partnership	Shaped content, delivery, evaluation No full control over the whole process	Social work
Stickley et al. (2011)	6—Partnership	Designed assessment tool via participatory action research Participated in educational design	Nursing and mental health
Rhodes (2013)	5—Placation	Participated in teaching and clinical exams Not involved in programme design	Nursing
Warren et al. (2017)	5—Placation	Participated in teaching and clinical exams Not involved in programme design	Midwifery
Thomson and Hilton (2013)	5—Placation	Facilitated discussions in learning environments Limited partnership or decision-making roles	Physiotherapy
Rees et al. (2007)	5—Placation	Involved in teaching and influencing curriculum Not recognised as partners	Medical
Schreur et al. (2015)	4—Consultation	Active in scenario teaching No involvement in decision-making or leadership	Mental health and psychology
Kuti and Houghton (2019)	4—Consultation	Active in scenario teaching No involvement in decision-making or leadership	Nursing and mental health
Shifrin and Cook (2021)	4—Consultation	Shared experiences in panel discussions Session design and control remained with the faculty	Nursing
Kim and Chun (2022)	4—Consultation	Informed creation of VR learning tools No shared decision-making in programme development	Nursing
Jury (2022)	4—Consultation	Voices were integrated into learning resources No full control or partnership in decisions	Social work
Speed et al. (2012)	NA	NA	Nursing
Duygulu and Abaan (2013)	NA	NA	Nursing
Thomson and Hilton (2012)	NA	NA	Physiotherapy
Schön (2016)	NA	NA	Social work

presents an example of ladder levels assigned to each article, along with the reviewer’s rationale for the scoring and the corresponding subject area for all 33 articles.

In the articles on social work education, the level of involvement ranged from 4 (consultation) to 7 (delegated power), with 6 (partnership) being the most frequently applied level among the 10 studies reviewed. Similarly, in the eight studies focusing on nursing and midwifery education, the involvement of LEEs ranged from 4 (consultation) to 7 (delegated power), with 6 (partnership) being the most common level, as three studies demonstrated involvement at this level. This is attributed to the power granted to service users and carers in these studies, such as their participation in the admission process, where they were involved in candidate selection. Nursing education specific to mental health showed participation levels ranging from 4 (consultation) to 6 (partnership), with 6 (partnership) being the predominant level among the 10 studies. Finally, the papers on lived experience education in allied health sciences reported participation levels of 5 (placation) and 6 (partnership), with 6 (partnership) being the most common level among the five studies reviewed.

Overall, the theoretical evaluation based on Arnstein’s Ladder of Citizen Participation reveals that most of the disciplinary areas of education considered in this review exhibit partnership-level engagement of LEEs in academic settings. However, not all studies included the description of engagement at a top level (Figure 2). Specifically, one article on social care, two articles on mental health nursing, four articles on nursing and midwifery, and two articles on allied health sciences described involvement only at the consultation (level 4) or placation (level 5) stages, lacking the deeper engagement seen at the partnership or power-sharing levels. Particularly, these limitations persisted irrespective of the publication year, highlighting that even in recent times, certain areas require improvement to achieve true co-production between academics and lived experience educators.

4.2. Perspectives of Lived Experience Educators in Lived Experience Education

The involvement of lived experience educators (LEEs) in providing practical real-life perspectives to students in social work and healthcare modules has garnered significant attention not only in the UK but also worldwide. This discussion is a narrative synthesis of findings across multiple studies, by illustrating recurring themes from LEE perspectives.

4.2.1. Expertise and Contribution

A repeated theme is the recognition of LEEs as not individuals with personal experience but as skilled educators who developed an understanding of the curriculum and pedagogical practices (Fox 2022). From this, LEEs acquire and refine their professional skills as part of their engagement in educational activities. Their expertise transcends their lived experiences, allowing them to design and deliver effective educational course content. For instance, their contributions to role-play scenarios and module materials like the Online Narrative Archive have been pivotal in bridging the gap between theoretical knowledge and practical application (Fox et al. 2021; Powell et al. 2013). This dual role of drawing on personal narratives while engaging in academic discourse can provide a sense of achievement and pride. Furthermore, LEEs tend to provide authentic and diverse perspectives, challenging students to critically reflect on their biases and assumptions, as seen in their involvement in experiential learning exercises (Skilton 2011). Therefore, by integrating their expertise into educational practices, they gain personal and professional growth in addition to fostering the learning experiences in students, creating a mutually beneficial dynamic.

4.2.2. Motivations and Empowerment

LEEs are motivated to be involved in educational environments from a desire to improve professional practice and prepare future practitioners to understand and address the realities of those with lived experience (Skilton 2011). They are motivated by a passion to challenge stereotypes, reduce stigma and promote inclusivity, starting with the students. Additionally, sharing their narrative experience in a professional context validates their sources of knowledge and creates a platform of attention for their voices to be respected, providing empowerment (Speers 2008). More importantly, the connections, support and collaboration between students and academics from their educational involvement serve as a catalyst for staying engaged in their roles. Through these motivations, LEEs find their empowerment in themselves to structure the path of future professional practices and advocate for a systemic change for the people at the other end.

4.2.3. Challenging and Transforming Learning

From the viewpoint of lived experience educators, they actively challenge students intellectually and practically beyond academic knowledge. The authentic role-plays and real-world scenarios push students out of their comfort zones. This process not only challenges preconceptions but also creates opportunities for students to confront their limitations and develop new perspectives (Atwal et al. 2018; Skilton 2011). For LEEs, the transformative learning process involves not just sharing their stories but modelling the complexities of real-life interactions. Through maintaining professional boundaries, effective communication and therapeutic relationships, LEEs provide students with practical applications allowing them to empathise with people (Atwal et al. 2018; Skilton 2011). These challenges and transformations reinforce the value of LEE experiences in leaving a lasting mark on future frontline practitioners.

4.2.4. Barriers and Challenges

Despite the significant contributions of LEEs, this review consistently identifies several barriers that hinder their full engagement within educational settings. A key challenge is inadequate preparation, which often stems from limited access to training before taking on educational roles, unclear expectations around their contributions and insufficient orientation to institutional cultures (Fox 2022; Speed et al. 2012). These challenges are compounded by operational issues, such as inconsistent payment systems and undefined role boundaries, which reflect broader shortcomings within educational institutions. While many of these barriers may seem familiar to educators in general, LEEs face some additional challenges like the emotional labour involved in recounting firsthand experiences with unsupportive environments, which underscores the need for debriefing sessions and peer support (Horgan et al. 2021). This suggests the critical need for structured debriefing sessions and access to peer support networks. Recently, it has been noted that the shift to virtual teaching during and after the COVID-19 pandemic poses obstacles such as interpreting non-verbal cues and navigating technological barriers (Fox et al. 2021). Addressing these barriers is necessary to ensure the sustainability and effectiveness of LEE contributions by providing a supportive environment.

4.2.5. Recommendations

For enhancing educational practices, several studies have provided recommendations on the role of lived experience educators. These include the implementation of structured feedback tools such as reflective templates and feedback forms tailored to LEEs, which can facilitate constructive engagement and support LEEs in providing student-centred and experience-informed responses (Speers 2008). Another notable recommendation is the co-produced codes of conduct that outline expectations, responsibilities and mutual respect (Fox 2022). Long-term engagement models have also been recommended for incorporating LEEs beyond one-time guest lectures, allowing them to contribute to module planning, assessment and curriculum over time (Horgan et al. 2021). For example, involving LEEs in experience-based learning activities, in assessment design or as mentors across different levels of academic years can lead to sustained partnership. Structured feedback mechanisms and collaborative approaches to curriculum design can provide an opportunity to co-produce content and refine their contributions based on constructive input (Atwal et al. 2018; Speed et al. 2012). Implementing these recommendations requires a concerted effort to create inclusive and supportive environments that prioritise the well-being of LEEs while recognising their valuable role in shaping the students.

4.3. Perspectives of Academic Educators in Lived Experience Education

Academic educators have an important role in facilitating the integration of lived experience educators into the lecturing modules. The commonly identified themes in the literature regarding their perspective on the lived experience education are summarised.

4.3.1. Challenges in Supporting LEEs

According to several studies, academic educators frequently address challenges in effectively supporting LEEs due to systemic barriers, operational inefficiencies and institutional restrictions. One of the recurring challenges is the lack of preparation and training to be provided to LEEs before their involvement in teaching (Speed et al. 2012). This insufficient preparation impacts the ability of LEEs to contribute effectively and adds additional academic weight on educators. Another frequent challenge involves the absence of formalised guidelines for incorporating LEEs into academic frameworks. Terry (2013) reported that the lack of structured strategies for lived experience involvement often led to tokenistic engagement, where LEE contributions were perceived as a “tick-box exercise” rather than integral to curriculum development. This concern is echoed in accounts from LEEs themselves, as feelings of marginalisation and exclusion, suggesting that some experienced their involvement as symbolic, lacking genuine partnership. This highlights the importance of institutional policies and frameworks for LEEs to support educators, students and LEEs.

4.3.2. Empowerment and Co-Production

Despite the challenges, academic educators recognise the transformative potential of co-teaching with LEEs. Several studies stated that educators value the incorporation of unique perspectives, particularly providing the first-hand experience of empathy, reflexivity and critical thinking to the students (Atwal et al. 2018). The partnership between educators and LEEs was reported to create a dynamic learning environment, encouraging students to reflect on their practices and decision-making skills. Studies have claimed the importance of addressing power dynamics between academics and LEEs to create equitable partnerships (Askheim et al. 2019; Terry 2013). By involving LEEs early in curriculum development, educators can provide shared ownership and ensure that their contributions align with pedagogical structures.

4.3.3. Balancing Pedagogical Objectives and Emotional Safety

The primary concern reported by academic educators is balancing the pedagogical goals of teaching with the emotional safety and well-being of LEEs. The supportive environment maintained by the academics provides strength to LEEs discussing sensitive or traumatic experiences (Speed et al. 2012). Warren et al. (2017) highlighted the emotional impact of LEE involvement on students, as they gain resilience and an empathetic approach. It is necessary that educators navigate the complexities of presenting these experiences to students in a way that enhances learning outcomes while ensuring a respectful and supportive environment throughout the module.

4.3.4. Innovative Practices and Recommendations

From the perspective of educators, the integration of lived experience experts in lecturing has necessitated innovative approaches to overcome traditional challenges and broaden the impact of their involvement. One such practice reported by Terry (2013) is the use of dedicated user coordinators, which has been instrumental in streamlining communication and providing strong support to LEEs. Academics have found these roles to create a bridge between academic staff and LEEs, in addition to effectively preparing LEEs for their teaching responsibilities. Similarly, Yalon-Chamovitz et al. (2017) explained how educators can address power dynamics in co-teaching scenarios by promoting equitable practices. This implementation reported an improvement in the delivery of course content, with students receiving a balanced and inclusive representation of diverse views. Moreover, academic staff recognise the importance of involving LEEs in research works as it enriches the academic environment by integrating lived experiences into evidence-based practices (Askheim et al. 2019). Added practical relevance in the academic research was observed when educators involved LEEs in co-authoring publications or presenting at conferences. By adopting these strategies, educators are restructuring the traditional teaching patterns, stretching beyond tokenistic involvement to complete co-production.

4.4. Perspectives of Students in Lived Experience Education

The ultimate goal of integrating LEEs in education is to benefit the student’s learning and practice. The synthesis of the student’s perspective reflects both the advantages and the challenges of experiential learning. The themes that emerged across multiple studies underscore the transformative potential of LEEs’ involvement, including power dynamics feedback consistency and ethical considerations.

4.4.1. Experiential Learning and First-Hand Experience

A common theme among students was the value of experiential learning in enhancing their professional preparation. Fox et al. (2021) and Skilton (2011) highlighted that engaging with LEEs in role-play and direct interviews creates a more authentic learning experience than traditional peer role-play. Students reported that gaining a first-hand experience with LEE stories deepened their understanding of effective communication, active listening and risk assessment. Similarly, Feijoo-Cid et al. (2022) found that from the lived experience education, students critically reflected on their care approaches, fostering a patient-centred perspective. Thus, the literature from multiple disciplines presents that students gain a first-hand experience that enhances their people-centred practice.

4.4.2. Reflective Practice

Much of the literature has reported how LEEs’ involvement improves reflections among students in the disciplines that this review covers. A series of studies on the perspectives of students present how students re-evaluated their biases, particularly regarding disabilities and stigma (Skilton 2011; Feijoo-Cid et al. 2022). Some qualitative studies suggest an association between exposure to lived experiences and deep introspection about professional behaviours (Collier and Stickley 2010; Rush and Barker 2006). Furthermore, Powell et al. (2013) support this by detailing that integrating people with lived experience narratives motivated students to consider the emotional, social and psychological dimensions of care on patient well-being. Taken together, these studies support the statement that the LEEs play a major role in students’ perspective of reflective practice and practical application.

4.4.3. Power Dynamics and Emotional Impact

The shift in traditional educational structures was both an opportunity and a challenge for students. Supporting this, Skilton (2011) reported that students occasionally felt uneasy when assessed by LEEs rather than the academic staff. Other authors further explored this shift and found that students’ initial discomfort later transformed into a recognition of the importance of co-production in education (Collier and Stickley 2010; Schreur et al. 2015). In addition, Driessens et al. (2019) reported that 92% of social work students in Belgium developed an awareness of effective communication through dialogue with LEEs. From this perspective, it is notable that students are adapting to the lived experience educational approach through practice and time, which in turn helps balance the power dynamics within the framework.

4.4.4. Feedback: Importance and Challenges

While feedback from LEEs is largely seen as beneficial, students had mixed opinions on its consistency and standards in general. Skilton (2011) showed that certain students sensed feedback to be overly positive, as it reduced the challenge they expected in the learning process. Along the same lines, Speers (2008) raised concerns about potential biases in LEEs’ evaluations, as reported by student’s perspectives on their approach. It should be noted that Fox et al. (2021) illustrated the role of feedback as an essential component of lifelong learning, reflecting professional growth. The power dynamics in student–LEE interactions might be the barrier to providing such constructive feedback by the LEEs (Stickley et al. 2011). However, it can be argued that the students’ adaptation to lived experience education and structural training on constructive criticism to LEEs might benefit the underlying challenges in the feedback system.

The perspectives of LEEs, academic educators and students represent both the advantages and challenges of integrating lived experience education. Collectively, they emphasise the need for a structured and supported approach, ensuring LEEs’ engagement, that academic staff are sufficiently prepared to facilitate collaboration and that students benefit from experiential learning and reciprocate by supporting the people accessing their professional services.

Despite the vast development in lived experience education and the perspectives of the stakeholders illustrated in this review, several limitations also need to be acknowledged. First, the diverse methodologies across the included studies, which vary in research designs, particularly in sample sizes and assessment tools, limit the ability to synthesise findings into one hierarchical conclusion. Secondly, studies mostly concentrated on qualitative data, capturing the subjective experiences but lacking quantitative measures examining the direct impact of LEE involvement on learning outcomes. Furthermore, self-reported reflections and authors being a part of the academic community itself may introduce response bias, as the responses might be socially desirable rather than their true perspectives. Additionally, the review focused primarily on social care, nursing and allied health science disciplines. A more comprehensive analysis incorporating a wide range of subject areas could provide a full picture of the effectiveness of lived experience education. Finally, while Arnstein’s Ladder of Citizen Participation provided a useful framework for evaluating the extent of LEE involvement, its rigid categorisation fails to capture the nuanced and evolving nature of co-production completely in educational settings. Future research may benefit from developing tools specifically for lived experience education to evaluate the levels of participation and outcomes specific to each teaching model.

5. Conclusions

In conclusion, the integration of lived experience educators (LEEs) into social work, nursing and allied health science education represents a transformative opportunity for student learning and practice. The findings from this scoping review suggest that LEE involvement improves experiential learning, provides reflective practice and shifts traditional power dynamics in educational practice. The level of involvement from LEEs is also emerging as more co-productive, with an effort that is increasingly equal to that of academics. However, challenges exist, particularly emotional burdens on students and LEEs, feedback inconsistencies and institutional support in ethical considerations, and must be addressed to ensure meaningful participation. To enhance the benefits of LEE involvement, structured feedback mechanisms, transparent role definitions and support systems for the well-being of LEEs and students must be implemented. Importantly, this study applied Arnstein’s Citizen Participation Ladder to evaluate the distribution of power within LEE–academic educator partnerships and categorise areas where engagement was tokenistic and collaborative. Further research is necessary to explore the long-term impact of this pedagogical approach across different disciplines. By addressing these challenges, higher educational institutions can ensure inclusive, reflective and people-centred learning for the students, consequently bridging the gap between theoretical knowledge and real-world practice.