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Valuing the Expertise of People with Lived Experience
Mel Hughes
This chapter will review current research and literature in relation to valuing the expertise of people with lived experience in social work education and of how this can inform your personal and professional development and improve outcomes for individuals, families, groups and communities you encounter in your subsequent practice.
The requirement set in 2002 by the Department of Health to involve service users and carers in social work education meant that all social work programmes in the UK developed strategies and activities aimed at embedding the lived experience in the social work curricula and for involving people in the design and delivery of social work programmes. Good practice was shared across programmes through published, peer reviewed research and discussion papers exploring and evaluating different ways of involving people in social work programmes. Much of this literature has focused on sharing and evaluating models of practice such as the inclusion of service users and carers in admissions interviews (Matka et al., 2010), simulation and role play activities as part of the preparation of students for practice (Duffy et al., 2013), assessment of studentsā work (Anka and Taylor, 2016; Skoura-Kirk et al., 2015), exploration of complex issues (Duffy, 2012), practice learning (Hughes, 2013; MacSporran, 2015; Teater and Baldwin, 2009) and, more recently, the use of social media and online tools to facilitate discussions and feedback to students from people with lived experience (Franklin et al., 2016; Quinney and Fowler, 2013; Westwood et al., 2017). As practice has evolved and programmes have developed strategies and partnerships for involvement, research and discussion has focused increasingly on identifying and evaluating the different types of involvement in social work education and the need to identify the impact on studentsā learning and subsequent practice, i.e. does it make a difference? It is important therefore in this chapter to consider the evidence that seeking the perspectives and insights of people with lived experience, can improve your practice and outcomes for people in receipt of social work services.
What do we mean by learning from the expertise of people with lived experience?
There are many ways that people with lived experience are involved in social work education and in influencing the personal and professional development of social work students and practitioners. People with lived experience may have been involved in the design of your qualifying programmeās curriculum and the individual sessions, modules and resources within it. They may have contributed to decision-making on applications and interviews when you applied for your course. They may have been part of your preparation and assessment of your readiness for direct practice and the development of practice skills such as communication. They may have been involved in delivering lectures, facilitating groups, sharing experiences and perspectives, in simulation and role play activities, in assessing your work at different stages of your programme or in supporting elements of your learning out on placement. While much of the literature focuses on evaluating the impact of specific types and examples of involvement, the principles remain the same: the need to involve people with lived experience in the design and delivery of social work programmes and to create opportunities for students to learn from the expertise of people with first-hand, lived experience and to use this insight to critically analyse, evaluate and reflect on other areas of knowledge such as legislation, social policy, research and practice.
In addition to classroom-based contact, learning from people with lived experience can also include seeking out opportunities to gain feed-back; ask questions and practise skills with a range of people you encounter in your life. As adults, we learn from the world around us and your development will be influenced by factors beyond that of your formal education. It will include your own life experiences (personal and professional) and will be influenced by your own views and values. OāSullivan and Taylor (2004, p. 22) discuss the concept of transformative learning where education can lead to changes in how we view the world. They widen the concept of educators to include:
Those who enable our learning ā colleagues, friends, neighbours, parents, children, organisational leaders, spiritual leaders, artists, researchers, teachers, mentors ā especially those who enable us to learn as we live and work and inspire us to a life of inquiry, openness and discernment.
Learning from people with lived experience is something you can approach in your everyday life as you engage in conversations, discussions and wider reading and adopt an openness to learning from a range of experiences and perspectives which may differ from your own.
Why is it important to learn from people with lived experience?
Activity
Before reading on, it is important that you first take a minute to consider this question. Why do you think it is important to learn from people with lived experience? As the introduction to this book demonstrates, there are many requirements for social work programmes to embed service user and carer involvement in social work education but why has this proven to be such a consistent requirement? In your experience of social work education, what do you feel the benefits to your learning and practice have been or will be?
There have been a number of published studies which have sought to explore this question. In our own evaluations of activities involving people with lived experience, students across a range of disciplines (nursing, physiotherapy, paramedic science, midwifery, occupational therapy and social work) identified that direct involvement enabled them to: gain different service user and carer perspectives; develop an emotional understanding of the lived experience; develop skills in communicating effectively with service users and carers; and identify how to be an effective practitioner in their chosen field (Bournemouth University Public Involvement in Education and Research (PIER) partnership evaluations). Students consistently rate the involvement of people with lived experience as one of the highlights of their programme. Robinson and Webber (2013) however, who reviewed 29 published studies on service user and carer involvement in social work education to identify what models were being used and evidence of their effectiveness, suggest there is a need for empirical evidence to show that involvement actually leads to changes or enhancements to subsequent practice.
In a study conducted with social work graduates, to explore whether they felt that service user and carer involvement in their education had impacted their subsequent practice (Hughes, 2016), graduates identified four types of impact:
Enhanced awareness of the lived experience
Taking on board suggestions of good practice from service users and carers
Developing a more critical āreal lifeā understanding
A culture of recognising service users and carers as experts
Is this similar to the list you identified?
Other published research studies have found similar findings. Irvine et al. (2015, p. 144) found that students from different cohorts identified that having involvement in their education had provided a ālink to the real worldā which better prepared them for the realities of practice. In an evaluation of an online activity where students and service users regularly engaged in online discussion groups there was evidence of students finding common and shared values, realising different perspectives, sharing and revising views and reflecting on issues. Students reported that the online discussion involving service users challenged them to think differently (Quinney and Fowler, 2013). Tew et al. (2012, p. 327) created opportunities for social work and mental health nursing students to meet with service users and carers to engage in dialogue relating to mental health theory and practice with the majority of students taking part reporting that āassumptions had been challenged and barriers broken downā. Common themes in our own research and wider afield appear to be the opportunity to engage in a dialogue with a range of people with lived experience and for students to be supported to explore learning and insight gained in relation to their own developing practice.
In much of the literature, it is often taken for granted that service users should be involved in social work education. Learning, however, needs to be purposeful. To ensure that involvement isnāt tokenistic, it is important to think about what types of involvement might contribute to your learning and development and enhance your subsequent practice. There has been some criticism that research into service user and carer involvement in social work education has focused more on āwhatā and āhowā we involve people with lived experience, with less focus on āwhyā (Hatton, 2017; Levy et al., 2016; Robinson and Webber, 2013; Tanner et al., 2017). The remainder of this chapter will focus on some of the evidence as to why it is important to your development as a social work student and practitioner to seek opportunities to learn from, and value the expertise of, people with lived experience such as by reading about the experiences of those contributing to this book. This is an important process in developing a culture where you value the expertise of people with lived experience in the development of your knowledge and practice and can use this to improve the process and outcomes for those you work with, particularly in statutory settings where involvement can often be short term, at crisis point and with limited opportunity to develop relationships over a period of time.
Learning from peopleās lived experience can challenge how you view the world
I started this chapter with reference to transformative learning and how the development of knowledge can change how we view the world around us. Transformative learning theory was developed by Mezirow in the 1990s and was offered as an explanation of how āadults learn to think for themselves rather than act upon the assimilated beliefs, values, feelings and judgments of othersā (2003, p. 1). It involves you developing an awareness of your own values and recognising, questioning and reflecting on these. Transformative learning involves making changes to your behaviour and practice based on the resulting shifts in thinking or frames of reference. Engaging in dialogue with people with lived experience; hearing their stories and experiences and being open to different perspectives, can be a catalyst, or trigger, for this shift in thinking and can lead to tangible changes to your practice. Cabiati and Raineri (2016) suggest that āproviding students with direct exposure to stigmatized people in roles that emphasise their humanity and strengths rather than their deficitsā can be an effective way of challenging preconceptions and bringing about change. Hatton (2017) argues that by developing models of involvement which are based on equality and partnership and where the personal expertise of people who use services is utilised and fully recognised, meaningful change can be achieved as service users can affect the way services are delivered.
Activity
Before reading on, you may want to give some thought to the experiences which are shared by contributors in this book. Consider each of the chapter headings. What are your immediate thoughts, preconceptions or views of who might have experienced the different statutory interventions being explored? Make a note of the images these conjure up or the stereotypes that may exist about people with this experience, for example, a child with multiple foster placements or an adult being assessed for substance use treatment. Keep this to one side so you can refer back to it later.
Learning from peopleās lived experience can help develop your knowledge
As well as leading to increased awareness, insight and perspective changes, there is evidence that service user and carer involvement can enhance your knowledge and understanding of a range of issues. Gupta and Blewett (2008) report on a module which brought together service users, academics and students to explore perspectives of families living in poverty. Students were able to recognise the far-reaching effects of poverty and the impact of this on family life and how poverty was not just about a lack of money. Duffy (2012) evaluates a teaching initiative which sought to bring victims and survivors of political conflict in Northern Ireland together with students to explore the issues. Those involved in the project identified that, as a result of open discussions and dialogue, students felt more confident in discussing the needs of victims and survivors of conflict in their practice and recognised the importance of addressing rather than sidelining such issues.
For there to be an impact on your knowledge, there is a need for you to be open to different perspectives and viewpoints. Beresford and Boxall (2012) highlight the challenges involved for people with lived experience questioning dominant theories and argue the importance of doing this if lived experience is to have an impact on practice. They use the example of mental health and disability campaigners seeking to challenge the prevalence of biomedical and individualised models and theories of disability which fail to acknowledge the impact of wider societal structures. Exploring formal knowledge with people with lived experience and being open to different perspectives will enable you not only to develop a broader knowledge base and understanding but also a more critical appreciation of current legislation, social policy, theory and practice and the impact these have on peopleās lives. In an evaluation of a service user led unit where students worked in small groups with a service user to explore an allocated topic (Hughes, 2013), students identified that having the opportunity to observe and discuss the impact of particular policies and legislation on different individuals and organisations they had encountered had enabled them to critically reflect and analyse these and develop a better understanding of the realities for people, the implications for practice and the complexities involved.
Learning from peopleās lived experience can improve your practice
You may experience opportunities within your social work course to practise your skills and receive feedback from people with lived experience either in the classroom or out on placement. There is an increasing range of evidence across social work and health disciplines to show that this can have an impact on your subsequent practice. One commonly used activity in social work education is involving people with lived experience in role plays and simulation activities to enable you to practice and demonstrate skills without the immediate pressure of being out on placement (Hughes and Warren, 2018). Duffy et al. (2013) identified that students found that role plays with service users and care...