Involving people with lived experience in physiotherapy education - Research report two: Harnessing the expertise of people with lived experience

In September 2014, the physiotherapy regulator for England and Wales (Health and Care Professions Council) introduced an education and training standard requiring service user and carer involvement in all approved programmes (HCPC 2018) including physiotherapy. Despite this, a scoping literature search on the involvement of people with lived experience in physiotherapy education and training returned only two results (Thomson and Hilton 2011, 2013), both of which pre-date the regulatory requirement. This means that there is no documented scientific literature on a client's lived experience involvement in a physiotherapy course since the introduction of this standard.

Introduction - Part 1: Service user and carer involvement in social work education - where are we now? Hugh McLaughlin, June Sadd, Brendan McKeever and Joseph Duffy Introduction - Part 2: Service user and carer involvement in social work education - where are we now? Joe Duffy, Brendan McKeever, Hugh McLaughlin and June Sadd 1. Outcomes focused user involvement in social work education: applying knowledge to practice Susan Levy, Rowan Aiton, Jade Doig, John P. L. Dow, Shireen Brown, Liz Hunter and Ryan McNeil. 2. Lessons from a comparative study of user involvement Carolyn Gutman and Shulamit Ramon 3. Belonging to the library: humanising the space for social work education Robin Sen, Nora McClelland and Beverley Jowett 4. A journey of embedding mental health lived experience in social work education Kate P. Dorozenko, Sophie Ridley, Robyn Martin and Lyn Mahboub 5. Involving People with Profound and Multiple Learning Disabilities in Social Work Education: Building Inclusive Practice Nicki Ward, Christian Raphael, Matthew Clark and Vicki Raphael 6. The benefits of prisoner participation in interdisciplinary learning Ben Raikes and Rachel Balen 7. Gaining by giving? Peer research into service user and carer perceptions of inclusivity in Higher Education Joy M. Rooney, Peter F. Unwin and Nina Osborne 8. Being a service user and a social work academic: balancing expert identities Joanna Fox 9. Role-played interviews with service users in preparation for social work practice: exploring students' and service users' experience of co-produced workshops Sara Hitchin 10. Learning from service users' involvement: a research about changing stigmatizing attitudes in social work students Elena Cabiati and Maria Luisa Raineri 11. The Meaningful Involvement of Service Users in Social Work Education: Examples from Belgium and The Netherlands Kristel Driessens, Hugh McLaughlin and Lia van Doorn 12. Mend the gap - strategies for user involvement in social work education Ole Petter Askheim, Peter Beresford and Cecilia Heule 13. Social work undergraduates and service users as co-learners and researchers Merav Moshe Grodofsky and Carolyn Gutman 14. A critical examination of the knowledge contribution service user and carer involvement brings to social work education Kieron Hatton 15. Expert by experience research as grounding for social work education Petra Videmsek 16. From service-user to social work examiner: not a bridge too far Hilda Loughran and Gary Broderick 17. What difference does it make? Findings of an impact study of service user and carer involvement on social work students' subsequent practice Mel Hughes 18. Life at the other end: participatory film-making, power and the `common third' Yohai Hakak and Kevin Holmes

The purpose of this paper is to examine the role of service user and carer involvement in NHS research and describe the nature of this involvement in three specialist mental health Trusts. It also aims to discuss the value of service user and carer involvement and present the perspective of the service user and research manager. The paper reviews patient and public involvement policy and practice in the NHS and NHS research. It examines the effectiveness of involvement activity and utilises a case example to demonstrate the impact of patient/service user involvement on the NHS and the individuals who take part. The paper concludes that service user involvement is essential if research is to support the development of health services that clearly reflect the needs of the service user and impact positively on service quality. Service user involvement is an established element of NHS research and development at both national and local level. The Department of Health strategy for research, Best Research for Best Health, reiterates both the importance of research that benefits the patient and the involvement of the service user in the research process. Despite this, the changes in Department of Health support funding for research, introduced by the strategy, may inadvertently lead to some NHS Trusts experiencing difficulty in resourcing this important activity. The paper illustrates the effectiveness of successful patient and public involvement in research. It also identifies how involvement has developed in a fragmented and uncoordinated way and how it is threatened by a failure to embed it more consistently in research infrastructure.

An electronically managed survey of NHS Research and Development (R & D) managers was conducted in 2005-2006 by the NHS RD Forum Service User and Carer Working Group. The study aimed to identify the location for the responsibilities, and the levels of public, service user, and carer involvement in the annual workload of Research and Development Offices in England. The study also aimed to identify the current trends underlying the context of public and service user involvement in research and determine initial findings that could be utilised for comparison in further studies. The questions posed by the study were: • that public and service user involvement in research is an increasing part of the current context of health service research, and, • that public involvement in research is supported by resources as part of the research management and governance responsibility. The study had a response rate of 24% (n=76) from the total number of R & D offices in England (315). From the responses, it was clear that aspects of Government guidance and policy, relating to the involvement of the public, service users and carers in NHS health services planning, administration, participation in and dissemination of NHS health and social care services, were being implemented. This survey provides an indication of the levels of involvement of the public and service users in research. It pointed to an inverse relationship between the level of dedicated resources and the actual support for public involvement activity. Those research managers who supported the highest levels of activity generally had fewer dedicated resources.

Participation and involvement of service users, carers, and families into the design, delivery, evaluation, and development of mental health policy and services is now a standard expectation. As social workers are employed in mental health settings, it is vital that graduates understand and ethically engage with mental health consumers, survivors, ex-patients, and family (CSX + F) in a meaningful and authentic manner. We argue this extends to fostering critical understandings of dominant discourses about distress, trauma, diagnosis, and intervention as a routine component of social work education. The Valuing Lived Experience Program (VLEP) described in this article within the Curtin University School of Allied Health aims to meaningfully embed the voices of people with lived experience of mental distress, trauma, and service use into the education of tertiary students and academics. Lived experience education in social work is vitally important and requires appropriate resourcing, clear purpose and principles, and attention to the democratisation of knowledge in order to achieve epistemic justice. In this article, the authors describe and contextualise the VLEP as a contemporary example of how lived experience in social work education can occur and be developed. IMPLICATIONS Meaningful participation of people with mental health lived experience is important to social work education. Lived experience education needs to be underpinned by clear ethical and theoretical principles for teaching and learning. Programs that rigorously engage with lived experience in mental health education can make a positive contribution to critical understandings of mental distress.

If I Have Seen Further, It Is Because I Stand on the Shoulders of Giants

In line with current developments in mental health training, the doctoral courses in clinical psychology at two UK universities, Canterbury Christ Church and Surrey, have been working together to increase service user and carer involvement. A questionnaire was constructed and sent out at two time-points, one year apart, to examine staff and trainee ratings of service user and carer involvement, the friendliness of the course towards service user and carer experiences, and barriers and opportunities in relation to involvement. Initial validation work on the questionnaire is briefly presented, along with the final questionnaire subscales and items used. There were eight subscales, of which seven had reasonable internal consistency. Response rates from staff and trainee samples on each occasion ranged between 35% and 48%. The number of trainees responding to both surveys was 44, and staff 81. Ratings of service user and carer involvement improved significantly between the two time-points. However, there was no overall change in ratings of courses' friendliness towards service user and carer experiences, or of barriers and opportunities in relation to service user involvement. Trainees rated barriers to involvement lower than did staff at both times. The questionnaire may be useful for other courses in assessing staff and trainee perceptions of service user and carer involvement.

Purpose – The purpose of this paper is to build a theoretical model of how and what clinical psychologists learn from service user and carer involvement in their training. Design/methodology/approach – A qualitative research design was adopted, and verbatim transcripts of semi-structured interviews conducted with 12 clinical psychologists were analysed using grounded theory methodology. Findings – Findings indicated that clinical psychologists learned from service user and carer involvement in a variety of ways and a preliminary model was proposed, encompassing four main categories: “mechanisms of learning”, “relational and contextual factors facilitating learning”, “relational and contextual factors hindering learning” and “impact”. Research limitations/implications – Further research is required to establish to what extent the current findings may be transferrable to learning from service user and carer involvement in the context of educating professionals from other disciplines. Additionally, participants had limited experiences of carer involvement, and more research in this area specifically would be useful. Practical implications – This study advocates for service user and carer involvement in clinical psychology training, and specific recommendations are discussed, including service user perspectives. Originality/value – Service user and carer involvement has become mandatory in Health Care Professional Council-approved training programmes for mental health professionals, yet if and how learning occurs is poorly understood in this context. This study makes an important contribution in evaluating outcomes of service user and carer involvement in clinical psychology training by advancing theoretical understanding of the learning processes involved. The authors are unaware of similar work.

This article will reflect on the experience of undertaking a participatory action research influenced study within a module of a social work degree programme. In doing so it will touch on some of the literature associated with student, service user and carer involvement in qualifying programmes, and in particular on research and module design. It will outline the history of service user and carer involvement in respect of a specific module within a singular degree course. It will provide an overview and some findings of the study, which sought to evaluate the involvement of an inherent service user and carer group within that degree course. However, as service user and carer involvement within degree programmes has had significant attention within the wider literature, the current study seeks to present a reflexive commentary on student, service user and carer involvement in research modules and participatory action research. Whilst the research presented here should be regarded as an initial foray with acknowledged limitations, it equally highlights some perspectives that lead to an understanding of how greater levels of student, service user and carer involvement within social work research might be achieved, in particular in the context of social work qualifying programmes.

Background Service users and carers using mental health services want more involvement in their care and the aim of this research programme was to enhance service user and carer involvement in care planning in mental health services. Objectives Co-develop and co-deliver a training intervention for health professionals in community mental health teams, which aimed to enhance service user and carer involvement in care planning. Develop a patient-reported outcome measure of service user involvement in care planning, design an audit tool and assess individual preferences for key aspects of care planning involvement. Evaluate the clinical effectiveness and the cost-effectiveness of the training. Understand the barriers to and facilitators of implementing service user- and carer-involved care planning. Disseminate resources to stakeholders. Methods A systematic review, focus groups and interviews with service users/carers/health professionals informed the training and determined the priorities underpinning involvement in care planning. Data from focus groups and interviews were combined and analysed using framework analysis. The results of the systematic review, focus groups/interviews and a review of the training interventions were synthesised to develop the final training intervention. To develop and validate the patient-reported outcome measure, items were generated from focus groups and interviews, and a psychometric analysis was conducted. Patient-reported outcome measure items and a three-round consensus exercise were used to develop an audit tool, and a stated preference survey was undertaken to assess individual preferences for key aspects of care planning. The clinical effectiveness and cost-effectiveness of the training were evaluated using a pragmatic cluster trial with cohort and cross-sectional samples. A nested longitudinal qualitative process evaluation using multiple methods, including semistructured interviews with key informants involved locally and nationally in mental health policy, practice and research, was undertaken. A mapping exercise was used to determine current practice, and semistructured interviews were undertaken with service users and mental health professionals from both the usual-care and the intervention arms of the trial at three time points (i.e. baseline and 6 months and 12 months post intervention). Results The results from focus groups (n = 56) and interviews (n = 74) highlighted a need to deliver training to increase the quality of care planning and a training intervention was developed. We recruited 402 participants to develop the final 14-item patient-reported outcome measure and a six-item audit tool. We recruited 232 participants for the stated preference survey and found that preferences were strongest for the attribute ‘my preferences for care are included in the care plan’. The training was delivered to 304 care co-ordinators working in community mental health teams across 10 NHS trusts. The cluster trial and cross-sectional survey recruited 1286 service users and 90 carers, and the primary outcome was the Health Care Climate Questionnaire. Training was positively evaluated. The results showed no statistically significant difference on the primary outcome (the Health Care Climate Questionnaire) (adjusted mean difference –0.064, 95% confidence interval –0.343 to 0.215; p = 0.654) or secondary outcomes at the 6-month follow-up. Overall, the training intervention was associated with a net saving of –£54.00 (95% confidence interval –£193.00 to £84.00), with a net quality-adjusted life-year loss of –0.014 (95% confidence interval –0.034 to 0.005). The longitudinal process evaluation recruited 54 service users, professionals and carers, finding a failure of training to become embedded in routine care. Limitations Our pragmatic study was designed to improve service user and care involvement in care planning among routine community mental health services. We intervened in 18 sites with > 300 care co-ordinators. However, our volunteer sites may not be fully representative of the wider population, and we lacked data with which to compare our participants with the eligible population. Conclusions We co-developed and co-delivered a training intervention and developed a unidimensional measure of service user and carer involvement in care planning and an audit tool. Despite a high level of satisfaction with the training, no significant effect was found; therefore, the intervention was ineffective. There was a failure of training to become embedded and normalised because of a lack of organisational readiness to accept change. Working with NHS trusts in our ‘Willing Adopters’ programme with enhanced organisational buy-in yielded some promising results. Future work Research should focus on developing and evaluating new organisational initiatives in addition to training health-care professionals to address contextual barriers to service and carer involvement in care planning, and explore co-designing and delivering new ways of enhancing service users’ and carers’ capabilities to engage in care planning. Trial registration Current Controlled Trials ISRCTN16488358. Funding This project was funded by the National Institute for Health Research (NIHR) Programme Grants for Applied Research programme and will be published in full in Programme Grants for Applied Research; Vol. 7, No. 9. See the NIHR Journals Library website for further project information.

ABSTRACTBackgroundIt is a regulatory requirement in the United Kingdom and Australia that people who use services are involved in health professional education. Evaluating service user involvement aims to inform curriculum development and improvement. However, although there is research evaluating service user involvement in medical education, optimal outcome measures for other health professionals have not been identified.ObjectiveThis study focused on service user involvement in entry‐level education for nurses, midwives, allied health professionals, social workers and pharmacists. The aim was to (i) identify study characteristics, designs and methods used to measure outcomes, (ii) describe the characteristics of outcome measures used and (iii) identify the extent to which the outcome measures aligned with the modified Kirkpatrick Evaluation Framework.Search StrategyMedline, CINAHL and PsychINFO databases were systematically searched for studies published over a 24‐year period between 2000 and 2024. Two reviewers independently screened studies. A narrative synthesis was conducted. Measures were mapped to the modified Kirkpatrick Evaluation Framework.ResultsNineteen studies using 29 measures were selected. Study designs were mostly quasi‐experimental with small university‐based samples. Data were typically collected pre‐ and post‐service user involvement, assessing changes in student knowledge and attitudes. Measures assessed the perspective of students (n = 29) and educators (n = 1), but not the service users' perspective (n = 0). Eight of the measures were validated; four for student health professionals and four for other populations. No measures aligned with the highest levels of the modified Kirkpatrick Evaluation Framework regarding the impact of service user involvement on the health system and patients.ConclusionLimitations in the study designs reduced the comparability and generalisability of the identified studies. None of the measures evaluated the impact of service user involvement on the health system or patients. Educators' perspectives on the service users' involvement in the education were limited. Service users' perspectives were absent. To embed a culture of involvement, future research is needed to identify the requirements of outcome measures from the perspective of service users and educators.Patient and Public ContributionCo‐author (S.R.), a lead for service user and carer involvement at an NHS Trust, guided the study design, data analysis and manuscript development.

The nature of relationships between educators and people with lived experiences is well documented in literature which explores the involvement of people with lived experience in health and social care education. Issues of power, control and influence and the nature of equal and meaningful partnerships are often explored. Arnstein’s (1969) ladder of involvement and Tew et al. (2004) ladder of involvement framework, for example, seek to differentiate between different types and levels of involvement with meaningful involvement only being achieved when power is delegated. This report explores the power differences between the person with lived experience and the academic.

Mental health care faces challenges that not only necessitate innovation but also require the involvement of service users and people with lived experience in developing and evaluating mental health care services. As the development of digital interventions is becoming more prevalent, design approaches are increasingly finding their way into mental health. There is evidence that these approaches can successfully integrate user experience into mental health services. However, there is no clear overview of the studies conducted and the lessons learned concerning the involvement of service users and people with lived experience. In this systematic review, we aimed to provide an overview of the involvement of service users and people with lived experience in mental health care services through design approaches and to synthesize the advantages of design approaches in mental health care. The following 5 databases were searched for relevant abstracts: PsycINFO, PubMed, Web of Science, Scopus, and Embase. In addition, 2 health design journal archives, Design for Health and The Journal of Health Design, were searched. To categorize the results, we collected the reported added value from the included articles and conducted a thematic synthesis in which the themes were developed from the retrieved data. The themes were discussed, revised, and checked until saturation was achieved. We included and categorized 33 papers. Most studies involved service users, primarily adults, and used various design approaches. Most of these studies aimed to design or evaluate digital interventions. Service users and people with lived experience were involved in different roles but never as decision makers. Studies that used co-design approaches exhibited the highest levels of involvement. Various added values were reported, including tailoring and testing interventions and digital interventions, improving engagement and collaboration, gathering the needs of stakeholders, and empowering participants as resourceful actors. The challenges reported were maintaining participants' continued participation throughout the study, managing the iterative nature of design, providing a safe space, balancing insights from design and medical science, and navigating design processes in medical environments. This systematic review provides an overview of the studies that used design approaches to involve service users and people with lived experience in mental health care innovation. Design approaches have advantages in mental health care innovation, offering added value and having manageable challenges. Future studies using design approaches in mental health care should involve participants as partners and decision makers and report on collaboration in a systematic and clear manner.

As hands-on instruction gives pupils the chance to apply the information and skills they gain while attending school to a real-world clinical setting, it may be beneficial for those participating in beginning employees physical therapy (PT) education programmes. Experiential learning is presently used in all entry-level PT programs in the form of clinical experiences; however, it has the potential to be included across the curriculum to improve student engagement as well as the application and retention of learned information. The objective of this article is to argue that there should be a greater emphasis placed on hands-on experience in physical therapy (PT) education programs that are designed for new graduates. Simulators, integrating medical experiences, volunteer work, public customer support organisations, and opportunities for professional growth are just a few of the various methods used in experiential education. The opportunity to put theoretical knowledge into practice in a setting free from criticism is very beneficial to students. Learning via experience may be especially helpful in subject preparation area when students have fewer opportunities to preparation their abilities since fewer possibilities are available. Students will be better prepared for the sort of meditative rehearsal that is necessary to make the changeover from learner to the skilled practitioner if they engage in the course of reflecting on their experiences, which is a typical activity that is conducted in combination with experiential learning.

BackgroundPrevious research into improving patient safety has emphasised the importance of responding to and learning from concerns raised by service users and carers. Expertise gained by the experiences of service users and their carers has also been seen as a potential resource to improve patient safety. We know little about the ease of raising concerns within mental health services, and the potential benefits of involving service users and carers in safety interventions. This study aimed to explore service user and carer perceptions of raising safety concerns, and service user, carer and health professional views on the potential for service user and carer involvement in safety interventions.MethodsUK service users, carers and health professionals ( n= 185) were recruited via social media to a cross-sectional survey focussed on raising concerns about safety issues and views on potential service user and carer participation in safety interventions. Data were analysed using descriptive statistics, and free text responses were coded into categories.ResultsThe sample of 185 participants included 90 health professionals, 77 service users and 18 carers. Seventy seven percent of service users and carers reported finding it very difficult or difficult to raise concerns. Their most frequently cited barriers to raising concerns were: services did not listen; concerns about repercussions; and the process of raising concerns, especially while experiencing mental ill health. There was universal support from health professionals for service user and carer involvement in safety interventions and over half the service users and carers supported involvement, primarily due to their expertise from experience.ConclusionsMental health service users and carers experience difficulties in raising safety concerns meaning that potentially useful information is being missed. All the health professionals and the majority of service users and carers saw potential for service users and carer involvement in interventions to improve safety, to ensure their experiences are taken into consideration. The results provide guidance for future research about the most effective ways of ensuring that concerns about safety can be both raised and responded to, and how service user and carer involvement in improving safety in mental health care can be further developed.