Service User Participation Research Articles

Reasons for disengagement in first-episode psychosis - perspectives from service users and their caregivers.

The efforts of early psychosis intervention programmes can be impeded by difficulties in maintaining the engagement of service users. As disengagement is often an autonomous decision made by service users, the main aim of this study was to gain insight into the reasons for service user disengagement through qualitative interviews with the service users themselves, and caregivers as proxies or secondary informants. Participants recruited for the study were enrolled in the Early Psychosis Intervention Programme in Singapore for at least a year, aged 21 and above, able to communicate in English, and had disengaged for at least three months. The recruitment and interview processes were conducted independently for service user and caregiver participants. Potential participants were invited to a face-to-face semi-structured interview over video call or in-person. Each interview spanned one to two hours, and comprised five phases - icebreaker, exploration of the participant's experience with EPIP before deciding to disengage, discussion of reasons for disengagement, exploration of the post-disengagement experience, and feedback and suggestions for EPIP. Recruitment aimed to conclude after 10-15 participants were interviewed for both service user and caregiver groups, with the expectation that data sufficiency would be reached with no new themes being generated. Ultimately, 12 service user and 12 caregiver participants were recruited. There were six pairs of service user and caregiver dyads, where the caregivers interviewed were caring for service users also enrolled in the study. Valuable qualitative insights were gathered, including the type of disengagement, medication compliance during disengagement, the decision-making process behind disengaging, and circumstances surrounding re-engagement. A total of five categories each with subthemes were identified from the reasons for service user disengagement - individual factors, stigma, progression, treatment factors, and external factors. There is a need to narrow down urgent areas of attention, aligning the study themes with established risk factors so that feasible solutions can be developed and appropriate care models can be adopted, to minimise adverse outcomes related to disengagement. It is important to keep an open mind to understand what personal recovery means to the individual service user, so that treatment goals can be better harmonised.

The experience sampling methodology as a digital clinical tool for more person-centered mental health care: an implementation research agenda.

This position paper by the international IMMERSE consortium reviews the evidence of a digital mental health solution based on Experience Sampling Methodology (ESM) for advancing person-centered mental health care and outlines a research agenda for implementing innovative digital mental health tools into routine clinical practice. ESM is a structured diary technique recording real-time self-report data about the current mental state using a mobile application. We will review how ESM may contribute to (1) service user engagement and empowerment, (2) self-management and recovery, (3) goal direction in clinical assessment and management of care, and (4) shared decision-making. However, despite the evidence demonstrating the value of ESM-based approaches in enhancing person-centered mental health care, it is hardly integrated into clinical practice. Therefore, we propose a global research agenda for implementing ESM in routine mental health care addressing six key challenges: (1) the motivation and ability of service users to adhere to the ESM monitoring, reporting and feedback, (2) the motivation and competence of clinicians in routine healthcare delivery settings to integrate ESM in the workflow, (3) the technical requirements and (4) governance requirements for integrating these data in the clinical workflow, (5) the financial and competence related resources related to IT-infrastructure and clinician time, and (6) implementation studies that build the evidence-base. While focused on ESM, the research agenda holds broader implications for implementing digital innovations in mental health. This paper calls for a shift in focus from developing new digital interventions to overcoming implementation barriers, essential for achieving a true transformation toward person-centered care in mental health.

Care coordinator delivered method of levels therapy to improve engagement and other outcomes in early psychosis (CAMEO): protocol for a feasibility cluster-randomised controlled trial

BackgroundRates of disengagement from early intervention in psychosis (EIP) services are high. Care coordinators make up the largest staff group in EIP services and have the most frequent and sustained contact with service users. The quality of relationships between service users and care coordinators plays a central role in determining the effectiveness of EIP services. Care coordinators, however, are not routinely offered training in psychosocial interventions that could enhance the therapeutic impact of their role. Method of levels (MOL) is a flexible, transdiagnostic cognitive therapy with potential advantages over previously evaluated approaches. Training care coordinators in MOL could make their routine contacts with service users more helpful and improve outcomes such as recovery rates and levels of engagement.AimsThis study aims to assess the feasibility of training care coordinators in EIP services to deliver MOL, to understand whether this approach might improve service user engagement and recovery from psychosis compared to treatment as usual, and to assess the feasibility of conducting a cluster-randomised controlled trial (C-RCT) with clustering at the level of teams. Specific feasibility outcomes relate to the recruitment and retention of participants, care coordinators’ level of engagement with the MOL training and supervision programme, implementation of MOL in practice, and the acceptability of the intervention amongst participants.MethodsA feasibility parallel group cluster-randomised controlled trial (C-RCT) designs with two arms: (1) treatment as usual (TAU) or (2) TAU plus support from a care coordinator who has received training in MOL. Randomisation will take place at the level of EIP teams with an allocation ratio of 1:2 in favour of the intervention arm. Our recruitment target is 12 EIP teams, 24 care coordinators working in participating EIP teams, and up to 96 service users working with participating care coordinators. Outcomes will be collected at baseline, 3 months, and 6 months. Qualitative methods will be used to understand participants’ experiences of the study, MOL training programme, and MOL intervention.DiscussionThis is the first study that aims to evaluate the feasibility of training EIP care coordinators to deliver MOL in their routine practice. Training care coordinators in MOL could enhance the quality of relationships between care coordinators and service users and improve outcomes for people experiencing early psychosis. Results will be used to determine the appropriateness of progressing to a larger evaluation trial.Trial registrationThis study was prospectively registered with the ISRCTN Registry (14082421).

Experiences and impacts of psychological support following adverse neonatal experiences or perinatal loss: a qualitative analysis

BackgroundPoor parental mental health in the perinatal period has detrimental impacts on the lives and relationships of parents and their babies. Parents whose babies are born premature and/or sick and require neonatal care or those who experience perinatal loss are at increased risk of adverse mental health outcomes. In 2021 a North-West charity received funding to offer psychological support to service users of infants admitted to neonatal care or those who had experienced perinatal loss, named the Family Well-being Service (FWS). The FWS offered three different types of support – ad hoc support at the neonatal units or specialist clinics; one-to-one person-centred therapy; or group counselling. Here we report the qualitative findings from an independent evaluation of the FWS.MethodsThirty-seven interviews took place online or over the phone with 16 service users (of whom two took part in a follow-up interview), eight FWS providers and 11 healthcare professionals. Interviews were coded and analysed using thematic analysis.ResultsThe analysis revealed two themes. ‘Creating time and space for support’ detailed the informational, contextual, and relational basis of the service. This theme describes the importance of tailoring communications and having a flexible and proactive approach to service user engagement. Service users valued being listened to without judgement and having the space to discuss their own needs with a therapist who was independent of healthcare. Communication, access, and service delivery barriers are also highlighted. The second theme - ‘making a difference’ - describes the cognitive, emotional, and interpersonal benefits for service users. These included service users being provided with tools for positive coping, and how the support had led to enhanced well-being, improved relationships, and confidence in returning to work.ConclusionThe findings complement and extend the existing literature by offering new insights into therapeutic support for service users experiencing adverse neonatal experiences or perinatal loss. Key mechanisms of effective support, irrespective of whether it is provided on a one-to-one or group basis were identified. These mechanisms include clear information, flexibility (in access or delivery), being independent of statutory provision, focused on individual needs, active listening, the use of therapeutic tools, and positive relationships with the therapist. Further opportunities to engage with those less willing to take up mental health support should be developed.

Public mental health services in Southern China and related health outcomes among individuals living with severe mental illness

Background Although national policies in China are comprehensive and instructive, a wide disparity exists between different cities. The current status of public mental health services by region in China remains unclear. This study aimed to investigate policies related to public mental health services, the contact coverage of public mental health services and outcomes of service users.MethodsA cross-sectional study was carried out in Southern China, between April 2021 and March 2022. Considering the geographical location, socioeconomic development levels, and prevalence of severe mental illness, four cities including Wuhan, Changsha, Guangzhou, and Shenzhen were selected. Relevant service providers were asked to report data on mental health policies and facility-related information, including mental health resources, registration rates of patients, management rates of patients, and medication rates of patients. Eligible patients were invited to report service user-related data, including contact coverage of public mental health services and their outcomes. SPSS 26.0 was used for data analysis.ResultsThe four cities in Southern China have made different efforts to develop public mental health services, primarily focusing on socio-economically disadvantaged individuals. Community health centers in Guangzhou and Shenzhen reported having more professional human resources on mental health and higher mental health budgets for patients. The contact coverage rates of most public mental services were higher than 80%. Patients in Changsha (B = 0.3; 95%CI: 0.1–0.5), Guangzhou (B = 0.2; 95%CI: 0.1–0.3), and Shenzhen (B = 0.3; 95%CI: 0.1–0.4) who received social medical assistance services reported higher levels of medication adherence. Patients in Wuhan (B = -6.5; 95%CI: -12.9--0.1), Guangzhou (B = -2.8; 95%CI: -5.5--0.1), and Shenzhen who received community-based rehabilitation services reported lower levels of disability (B = -2.6; 95%CI: -4.6--0.5).ConclusionsThere have been advances in public mental health services in the four Southern cities. The contact coverage rates of most public mental health services were higher than 80%. Patients’ utilization of public mental services was associated with better health outcomes. To improve the quality of public mental health services, the government should try to engage service users, their family members, and supporters in the design, delivery, operationalization, and evaluation of these public mental health services in the future.

Addressing the intensity of rehabilitation evidence-practice gap: rapid review, stakeholder perspectives and recommendations for upper limb rehabilitation after acquired brain injury

Background/Aims For people living with acquired brain injury from stroke or trauma, clinical practice guidelines recommend high-intensity physical rehabilitation to optimise motor outcomes. There is an acknowledged evidence–practice gap between routine clinical practice and the amount, intensity and type of active upper limb rehabilitation recommended in research-informed guidelines. The aims of this study were to identify methods used to facilitate high doses of upper limb practice in published trials, understand stakeholder perspectives of the barriers and enablers to these methods in hospital settings, and to synthesise findings to form an evidence-based action plan for rehabilitation professionals, service providers and adults living with an acquired brain injury. Methods A rapid systematic literature review and a series of qualitative interviews with service users and rehabilitation clinicians explored the evidence on intensity and the experience of high intensity rehabilitation following brain injury and stroke. Triangulating this mixed method evidence, recommendations were generated on how to increase upper limb rehabilitation intensity during inpatient therapy. Results There was consensus in the literature that high-dose motor training improves a person's ability to move their hand and arm after brain injury and stroke. Trials mostly delivered therapy programmes as a replacement to usual care; however, it was unclear how high-intensity therapy was integrated into usual rehabilitation. Methods employed to increase the intensity of upper limb rehabilitation included strategies to optimise engagement (eg encourage independent practice and more practice); clinician-related processes (eg self-auditing, use of groups); environmental factors (eg equipment, dedicated space); and organisational influences (eg professional development, dedicated research positions and mentoring). Qualitative data showed that barriers and facilitators stem from service user factors (eg cognitive ability, advanced age, cultural mores) as well as clinician factors (eg quality of the therapeutic relationship, type and quality of therapist instructions). Organisational factors such as a strong research culture and a commitment to evidence-based practice positively influenced outcomes. Conclusions There is capacity to increase the intensity of upper limb rehabilitation by optimising organisational support and systems, as well as greater service user engagement in therapy processes. Implications for practice Rehabilitation clinicians have long understood that dose is a critical component of motor training. Findings may assist with structuring upper limb rehabilitation programs and addressing clinician factors to increase the intensity of therapy.

Trauma-Informed Care in a Homeless Women's Shelter: A Mixed Method Evaluation

Trauma-informed care (TIC) benefits to service users and providers are increasingly acknowledged across various health and social care settings. TIC can potentially increase service user engagement, prolong shelter placements, and lessen staff vicarious trauma and burnout. However, studies documenting staff experiences and/or the implementation of TIC are scarce. This limitation has prompted calls for more grounded and applied research into trauma-informed practice, tracking implementation in practice, staff perceptions, barriers, and organisational change. This study aims to address this gap and is an ecological, mixed-methods evaluation of the efficacy of TIC training in a female-only homeless shelter. Quantitative data included 132 incident reports during the first yearly quarters pre- and post-training, hypothesising post-training reductions in incident numbers and severity. Using expansive thematic analysis, semi-structured interviews with six shelter staff (n = 6) explored employee views of TIC relative to trauma understanding, incident management, and integration in practice. Findings revealed a marginal increase in incident numbers and a statistically significant reduction in incident severity post-TIC with a 50% reduction in calls to emergency medical services (EMS). Participant accounts of working practice pre- and post-TIC uncovered increased trauma understanding, increased confidence and competence, healing relationships, and enhanced self-care. Findings are discussed with reference to Substance Abuse and Mental Health Services Administration (SAMHSA)’s (2014) trauma-informed framework and Yatchmenoff et al’s. (2017) core questions in evaluating TIC. While these results are significant as one of the first evaluations of TIC training in Ireland, limitations and implications for future research and practice are considered.

Co-design of health educational materials with people experiencing homelessness and support workers: a scoping review.

People experiencing homelessness are often marginalised and encounter structural barriers when seeking healthcare. Community-based oral health interventions highlighted the need of well-trained practitioners for the successful engagement of service users and behaviour change. However, a lack of adequate information and specific training has been previously reported. The adoption of inclusive approaches, such as co-design, to develop tailored and meaningful health promotion training and educational materials capable of addressing the specific needs of this group is required. Co-design entails active involvement of different groups in research processes that acknowledge participants' needs and expectations. This scoping review aims to identify the available literature on the participation of people experiencing homelessness and/or their support workers in co-designing health and oral health promotion training/educational materials, approaches adopted, and barriers and enablers to develop these materials. The Joanna Briggs Institute (JBI) Scoping Review Methodology informed the development of the scoping review. The protocol was registered on the Open Science Framework. Six electronic databases (Medline (OVID), PsychInfo (OVID), Scopus, Web of Science, Applied Social Sciences Index and Abstracts (ASSIA) (ProQuest) and CINHAL) were systematically searched using MeSH terms. An extensive grey literature search, consultation with experts and hand searching of reference lists took place. Records were screened independently and in duplicate using the Rayyan Qatar Computing Research Institute (QCRI) online tool, followed by qualitative content analysis involving descriptive data coding. Eight studies/materials were included. Key approaches adopted to co-design, enablers and barriers were captured. The enablers were inclusivity, a safe environment for positive participation, empowerment and flexibility, the barriers were difficulty in recruiting and sustaining participation, power differentials, and limited resources. The evidence in this area is limited. This scoping review provided foundations for further research to examine the impact of different components of the co-design process including the environment in which the co-design process is conducted. Further studies with experimental design and reported using appropriate study design frameworks detailing active components of the co-design process would strengthen the evidence base in this area.

Inequity in clinical research access for service users presenting comorbidity within alcohol treatment settings: findings from a focused ethnographic study

BackgroundWhile healthcare policy has fostered implementation strategies to improve inclusion and access of under-served groups to clinical care, systemic and structural elements still disproportionately prevent service users from accessing research opportunities embedded within clinical settings. This contributes to the widening of health inequalities, as the absence of representativeness prevents the applicability and effectiveness of evidence-based interventions in under-served clinical populations. The present study aims to identify the individual (micro), organisational (meso) and structural (macro) barriers to clinical research access in patients with comorbid alcohol use disorder and alcohol-related liver disease.MethodsA focused ethnography approach was employed to explore the challenges experienced by patients in the access to and implementation of research processes within clinical settings. Data were collected through an iterative-inductive approach, using field notes and patient interview transcripts. The framework method was utilised for data analysis, and themes were identified at the micro, meso and macro levels.ResultsAt the micro-level, alcohol-related barriers included encephalopathy and acute withdrawal symptoms. Alcohol-unrelated barriers also shaped the engagement of service users in research. At the meso-level, staff and resource pressures, as well as familiarity with clinical and research facilities were noted as influencing intervention delivery and study retention. At the wider, macro-level, circumstances including the ‘cost of living crisis’ and national industrial action within healthcare settings had an impact on research processes. The findings emphasise a ‘domino effect’ across all levels, demonstrating an interplay between individual, organisational and structural elements influencing access to clinical research.ConclusionsA combination of individual, organisational and structural barriers, exacerbated by the COVID-19 pandemic, and the socioeconomic landscape in which the study was conducted further contributed to the unequal access of under-served groups to clinical research participation. For patients with comorbid alcohol use disorder and alcohol-related liver disease, limited access to research further contributes towards a gap in effective evidence-based treatment, exacerbating health inequalities in this clinical population.

Paramedicine research with family and bystanders: A methodological review

The evolving nature of paramedic care has resulted in a growing body of evidence considering service user experience, including the experiences of patients, family members and bystanders. As new areas of research enquiry emerge in paramedicine, it is important to review the methods, methodologies, and quality of evidence in these topic areas. A methodological review was conducted of peer-reviewed empirical studies reporting on family and bystander experiences where emergency ambulance services responded. Descriptive statistics were calculated to describe select study characteristics. Study quality was appraised using the Johanna Briggs Institute Checklist for Qualitative Research and the Mixed Method Appraisal Tool. Service user engagement was evaluated using a newly adapted tool, the Service User Engagement Ladder. After searching five databases, 37 studies of varying research designs were included in this review. While overall study quality was high, there was a notable absence of theoretical discussion, particularly regarding qualitative methodologies. In assessing service user engagement, family and bystanders had very low levels of engagement in the research process. Only one study in this review utilised methods where co-construction of research occurred. Current research is dominated by Western study locations and biomedical paradigms that privilege Westernised populations and ways of considering experience, ignoring the preferences and experiences of Indigenous people and people from minoritised ethnic groups. To further develop paramedicine research involving family and bystanders, transparent reporting around the theoretical underpinnings of research must be strengthened. There is a significant opportunity to increase service user engagement in the research process. Greater attention to cultural and ethnic diversity is needed in researching family and bystander experiences.

The delivery of creative socially prescribed activities for people with serious mental health needs during lockdown: Learning about remote, digital and hybrid delivery.

Social prescribing interventions connect mental health service users to community resources, to support physical and mental wellbeing and promote recovery. COVID-19 restrictions impacted the delivery of socially prescribed activities, preventing face to face contact for long periods. The aim of this study was to understand how Voluntary Community and Social Enterprise (VCSE) organisations working with a local NHS mental health Trust responded to the challenges of social distancing during the COVID-19 pandemic. This understanding will be used to make recommendations for future practice, post-lockdown. Using a convergent mixed methods design, we surveyed VCSE providers of socially prescribed activities intended to be accessible and appropriate for people with severe mental health needs. Follow-up interviews explored further how they adapted during the first year of the pandemic, the challenges they faced, and how they sought to overcome them. The survey and interview data were analysed separately and then compared to identify convergent and divergent findings. Twenty VCSE representatives completed the survey which provided a snapshot of changes in levels of connection and numbers reached during lockdown. Of 20 survey respondents, 11 participated in follow-up interviews. Interviews revealed that lockdown necessitated rapid change and responsive adaptation; activities were limited by resource, funding, safeguarding and government restrictions; no single format suited all group members; connection was key; and impact was difficult to gauge. VCSE organisations commissioned to deliver creative socially prescribed activities during the pandemic rapidly adapted their offer to comply with government restrictions. Responsive changes were made, and new knowledge and skills were gained. Drawing on experiences during lockdown, VCSE organisations should develop bespoke knowledge, skills and practices to engage service users in future hybrid delivery of arts, sports, cultural and creative community activities, and to ensure that digital activities offer an equivalent degree of connection to face-to-face ones. Additionally, more effective methods of gaining feedback about patient experience of hybrid delivery is needed.

A pilot exploration of staff and service-user perceptions of a novel digital health technology (Virtual Engagement Rehabilitation Assistant) in complex inpatient rehabilitation

Purpose Digital health technologies have the potential to advance rehabilitation. The Virtual Engagement Rehabilitation Assistant (VERA) is a digital technology, co-designed to increase service-user engagement and promote self-management. This qualitative study explored staff and service-user perceptions of implementing VERA on a UK complex inpatient rehabilitation ward. Methods Purposively sampled service-users were allocated to VERA for up to six weeks. The Non-adoption, Abandonment, Scale-up, Spread and Sustainability (NASSS) framework underpinned service-user post-intervention interviews and staff focus groups, and structured analysis of the data. Seven service-users were interviewed. Nine staff contributed to focus groups. Results A framework analysis identified themes (and subthemes) structured by the NASSS framework domains: 1. Nature of Clinical Condition, 2. Technology (Ease of Use, Holding Information/Resources in a single Digital Location, Appointments), 3. Value Proposition (Structuring Time, Feedback, Unexpected Benefits) 4. Adopters (Confidence in using Technology, Usefulness), 5. Wider Organisation. Ease of use and storage of key information in a single location were beneficial. Reliability, and provision of accurate and timely feedback to staff and service-users, were identified as essential. Conclusions A blended approach is required to meet staff and service-user needs. The potential for VERA in a community setting was identified and requires further investigation. Learning from VERA will support development of other digital technologies and their implementation.

“Whose safeguarding is it anyway?” service user engagement in safeguarding processes

Purpose In 2014, the Health Service Executive (HSE) in Ireland published its Safeguarding National Policy and Procedures (HSE, 2014). Under this policy, all agencies providing services through the social care directorate must ensure a robust culture of safeguarding is in place. Concurrent to this has been a move in social policy, practice and research to include the voice of the service user, both in terms of planning and reviewing services. (e.g. HIQA, 2012; Flanagan, 2020) This article examines whether service users with intellectual disabilities want to be involved in safeguarding plans and, if so, how that can be supported. Using focus groups service users demonstrated their knowledge of safeguarding as a concept, how they felt about the issues raised, and, crucially what they felt they would like to see happen next in addressing a safeguarding incident or concern. The focus groups took place in a large organisation providing residential services, day services, independent living supports and clinical supports. Engaging service users in planning and responding to safeguarding concerns is a fundamental principle of human rights legislation, both nationally and internationally. This study aims to highlight that it is both possible and desirable to engage fully with service users using a range of simple communication tools. For this to be implemented as routine practice in services providing support for people with intellectual disabilities, authentic leadership is required. Services will need to devote time, human resources and will need champions to get on board with the necessary culture shift. Design/methodology/approach Qualitative research examined peoples’ “lived experiences” and knowledge of safeguarding. Focus groups were used with thematic analysis highlighting common themes throughout, as guided by Braun and Clarke (2006). There were two objectives: Objective 1: measuring participant’s understanding of the safeguarding process. Objective 2: compare the potential differences between safeguarding plans devised by the participants in the focus groups, versus plans devised by trained designated officers responsible for safeguarding within the service. Findings Four principal themes emerged – 1. participants understanding of safeguarding; 2. restorative justice; 3. consent; and 4. high levels of emotional intelligence and compassion. Participants demonstrated that they could and did want to be involved in safeguarding planning and showed little variation in the plans compared to those completed by trained staff. Research limitations/implications The study was completed with a small sample size in a single service in one area. It may not represent the lived experiences and knowledge of safeguarding in other services and indeed other countries. The video may have led to some priming; for instance, the Gardai in the footage being called may have resulted in the participants stating that contacting Gardai should be part of the plan. After the video was shown, there was a heightened awareness of safeguarding. This may indicate that participants are aware of safeguarding but unsure of the terminology or how to discuss it out of context. Practical implications For this to be implemented as routine practice in services providing support for people with intellectual disabilities, authentic leadership is required. Services will need to devote time and human resources and will need champions in the safeguarding arena to get on board with the shift in culture required. Social implications While there did not appear to be many barriers to listening to participants, to progress this as a standard practice a very real shift in culture will be needed. It is important for practitioners to ask: Is the vulnerable person aware that this concern has been raised? What is known of the vulnerable person’s wishes in relation to the concern? To truly engage with service users in safeguarding plans these questions need to be more than a “tick box” exercise. This process needs to be fully embedded into a culture that promotes a person-centred, rights-based, inclusive approach as a standard rather than a one-off project. Some structural changes will be needed regarding the time given to designated officers, and what resources they can access (such as speech and language therapy). However, the real difference will be made by services operating authentic leadership that champions engagement on this scale, to fully answer the question posed by the researchers at the beginning of this report, “Whose safeguarding is it anyway?” Originality/value There appears to be little evidence of service user engagement in terms of planning and processing safeguarding responses, either in research or anecdotally.

Methods and experiences of a collaborative research project carried out by academic clinical researchers and experts by experience

Introduction Patient or service user participation in research and development is seen as essential in health research, including in topics within psychiatry. The process and depth of research collaboration can vary and is not always described adequately.Objectives The objective is to describe the collaborative methods and the experiences of experts by experience and academic researchers in a research project on patients’ experiences of remote care in psychiatric settings during and after the COVID-19 pandemic.MethodsWe describe our collaborative methods and experiences using the INVOLVE key features (www.involve.nihr.ac.uk).ResultsCollaboration started with an open discussion on research aims and role definitions. Collaborative methods included teaching and training sessions on interview methodologies, collaboratively writing and evaluating documents for ethical approval and research permission, collaboratively planning the recruitment process, preparation, and conducting research interviews and analysis. On-line and in-person meetings have been essential for an an-going dialogue and reflection. The methods and experiences are described in more detail in Table 1. Openness and building trust have been important and time was needed to achieve these. All academic researchers had been actively working with experts by experience in the clinical settings before the research project. The collaboration in the current study has emphasized the need for active involvement of experts with experience throughout the research process. For the experts by experience, the project has provided new insight into academic research and given them confidence in their ability to participate meaningfully in a collaborative study project. The academic researchers valued the sense of significance of the research topic and shared decision-making that the collaboration has brought into the project.Image:ConclusionsCollaborative research needs time to build trust and to clearly define the roles of participants, from the opening stage of the process. Continuous learning during the research process is emphasized. Since different research methodologies arise from various theoretical backgrounds, we suggest adding a topic on research theory to the INVOLVE key features.Disclosure of InterestNone Declared

Operationalizing the Consolidated Framework for Implementation Research to build and support the lived experience workforce in direct health service provision.

The involvement of people with lived experience (LEX) workers in the development, design, and delivery of integrated health services seeks to improve service user engagement and health outcomes and reduce healthcare gaps. Yet, LEX workers report feeling undervalued and having limited influence on service delivery. There is a need for systematic improvements in how LEX workforces are engaged and supported to ensure the LEX workforce can fully contribute to integrated systems of care. This study aimed to operationalize the Consolidated Framework for Implementation Research (CFIR) using a rigorous scoping review methodology and co-creation process, so it could be used by health services seeking to build and strengthen their LEX workforce. A systematic literature search of four databases was undertaken to identify peer-reviewed studies published between 2016 and 2022 providing evidence of the inclusion of LEX workers in direct health service provision. A descriptive-analytical method was used to map current evidence of LEXworkers onto the CFIR. Then, co-creation sessions with LEX workers (n = 4) and their counterparts-nonpeer workers (n = 2)-further clarified the structural policies and strategies that allow people with LEX to actively participate in the provision and enhancement of integrated health service delivery. Essential components underpinning the successful integration of LEX roles included: the capacity to engage in a co-creation process with individuals with LEX before the implementation of the role or intervention; and enhanced representation of LEX across organizational structures. The adapted CFIR for LEX workers (CFIR-LEX) that was developed as a result of this work clarifies contextual components that support the successful integration of LEX roles into the development, design,and delivery of integrated health services. Further work must be done to operationalize the framework in a local context and to better understand the ongoing application of the framework in a health setting. People with LEX were involved in the operationalization of the CFIR, including contributing their expertise to the domain adaptations that were relevant to the LEX workforce.

Research Co-production Within Humanitarian Health: Reflections on Our Practice

Research co-production is recognized as important for humanitarian health actors, as part of the growing drive towards localizing and decolonizing aid. Despite recognition that co-production is challenging to implement, reflexive accounts of co-production efforts remain limited. In this paper, we critically examine the role of co-production within a multi-partner research collaboration in Lebanon involving multiple academic, civil society and government-affiliated partners based in the UK and in Lebanon. Through interactive reflection sessions and interviews with research team partners, we document how co-production principles were embedded into our project, explore contextual factors influencing the collaboration, identify successes and challenges to co-production and identify future opportunities for research co-production. We find mixed understandings of co-production between team members and siloed efforts to co-produce within our partnership. We identify key challenges to co-production including contextual factors related to Lebanon and COVID-19, institutional power dynamics, budgets, difficulties in engaging service users and availability of stakeholders to co-produce, while mapping examples of successful co-production in our project. Our study emphasizes the importance of ensuring shared understandings of the scope of co-production at the outset of projects and suggest the collaborative analysis processes provide a key opportunity for researchers to embed co-production principles.

Beyond reality: metaverse technologies revolutionizing libraries and elevating user engagement

PurposeThis study aims to provide insight into the usage of metaverse technologies in libraries, examining their impact on library service user engagement and assisting in unique promotion and marketing techniques for the metaverse setting.Design/methodology/approachThis study used a literature review approach to synthesize current scholarly material on metaverse technologies and their practical applicability in the library context. It gathered academic literature from Emerald, Web of Science, Scopus and Google Scholar databases to construct a strong foundation for the study from journal articles, which were retrieved using the researcher’s “search string.”FindingsMetaverse technologies are reshaping the idea of smart libraries, offering innovative approaches to interact with information resources and delivering users progressively immersive and dynamic learning experiences. This in-depth investigation adds to a better understanding of the emerging link between metaverse technology and library professionals. It bridges the gap between libraries and users, transcending geographical boundaries and enabling libraries to serve a global audience. It anticipates metaverse-infused academic libraries welcoming new methods of engaging with their users with interactive capabilities to create a unique environment to explore library resources in an interactive marketing approach.Originality/valueThe metaverse is not only the future but also the future of libraries. This research fills the gap by advancing the literature on cutting-edge library technologies and empowers users to become reflective and well-informed information producers. It also helps library stakeholders engage with their audience in new and impactful ways and explore innovative marketing strategies tailored to the metaverse environment.

Exploring Social Work professionals' Experiences of the Mindfulness-Based Social Work and Self-Care Programme: A Focus Group Study.

The evidence for the potential of mindfulness-based programmes to support improved social work practice and self-care is growing. The aim of this focus group study was to explore social workers' (n = 13) experiences of the Mindfulness-based Social Work and Self-care programme (MBSWSC). Thematic analysis highlighted two superordinate themes: benefits to direct social work practice and coping with the social work role. Four subordinate themes highlighted the different social work practice components that were enhanced through MBSWSC participation: social work assessment, service user engagement and team working, working to social work values, and social work skills. Three subordinate themes identified improvements in individual processes which supported enhanced stress coping: moving from avoidant to approach coping, improved boundaries, increased emotional awareness and reduced negative thinking. Our findings indicate that the MBSWSC programme can have a multi-faceted positive effect on social work practice, and on social work professional's capacity to cope with their role.

Exploring service provider perspectives on service user engagement across service components in coordinated specialty care programs for psychosis.

Engagement in services is a core element to successful outcomes for service users and programs. In coordinated specialty care (CSC) programs, designed for individuals experiencing first-episode psychosis, engagement has only been measured programmatically and not by service component. This qualitative study sought to explore provider perspectives on service user engagement in service components of CSC. Semistructured interviews were conducted with 20 service providers from five community-based early intervention programs for psychosis in the United States. Interviews were recorded and transcribed verbatim, and thematic analysis was used to analyze the data collected. Provider participants described barriers and facilitators that contribute to disengagement or engagement in four service components within early intervention programs: individual psychotherapy, family education and support, medication management, and vocational services. Barriers identified included substance use, stigma, trauma, and external pressures. Identified barriers to engagement in CSC were both unique to individual components and cut across them. By better understanding the complexity of barriers and their intersections within and across CSC components, there can be more effective policy and program development to reduce disengagement and hopefully increase positive outcomes for service users. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

How the expert nursing role was used to facilitate the co-design of a patient interview study.

Co-design is a research method that seeks to engage service users in research. The approach fosters inclusivity and shared power by having researchers and research participants work together for some or all of a study. To describe the experience of co-designing a patient interview study from the perspective of an expert stoma nurse, using a case-study approach and reflexive methods. Valuing expert patients' experiences when conducting research about them enabled patients to be trained as participant researchers to co-design and undertake a patient interview study. The co-design process enabled the researcher to develop a greater recognition of the fact that experience of looking after people with stomas does not equate to expertise in knowing what it is like to have a stoma. This enriched her research experience and increased the authenticity of the study. Co-designing a study with service users creates challenges for nurse researchers. They must pay attention to relational changes, time, planning and organisation to ensure that they conduct their research rigorously and ethically, and safeguard the co-researchers and other participants from potential risks. Co-designing research is critical for developing effective, patient-centred bodies of evidence. Nurse researchers can play a critical role but must be prepared to shift from directive to participatory methods to identify appropriate, patient-focused improvements.