Julia Jones

Background: There is limited evidence regarding the outcomes and impacts of Patient and public involvement (PPI) in research, mainly based on narrative studies. Existing frameworks for supporting and evaluating PPI often require adaptation to specific contexts, and comprehensive instruments are needed. From an international perspective, strengthening the scientific foundation that underpins PPI is crucial to generate stronger evidence to understand which approaches work best, in which contexts, and with what effects. Objectives: To promote PPI implementation in German health research, this project aims to (1) Establish an evaluation framework, (2) Develop a modular evaluation tool in the form of a questionnaire and (3) Pilot and psychometrically validate the tool. Methods and analysis: A three-phase mixed methods approach will be employed, integrating qualitative and quantitative data. First, we will explore with researchers, research partners and other stakeholders in health services research what contributes to meaningful and successful PPI through a web-based survey and focus groups. Findings are discussed in a codesign workshop in which participants agree on an evaluation framework based on a LOGIC model. Second, items from international instruments that evaluate PPI are deductively assigned to the evaluation framework. Further items are developed based on the focus groups from phase 1. Cognitive pretests and qualitative review will be conducted with researchers and patients in order to refine the item pool and develop the evaluation tool. Third, the evaluation tool with modules for researchers and patients will be piloted in a web-based survey. Data analysis will include thematic analysis for qualitative data and descriptive and psychometric analyses for quantitative data. A participatory research team will provide ongoing support throughout all project phases. Ethics and dissemination: Ethical approval has been obtained from the Local Ethics Committee of the Centre for Psychosocial Medicine, University Medical Centre Hamburg-Eppendorf (LPEK-0889). The study will follow the principles of the Helsinki Declaration and good scientific practice. Results will be disseminated at national and international conferences, public symposiums and in peer-reviewed journals, contributing to the internationally developing field of PPI in research and addressing relevant research gaps.

Background: Drug and alcohol support workers play a vital role in addressing the growing burden of substance-related harm and mortality. The COVID-19 pandemic led to an abrupt and significant shift towards home working for many in this workforce. This study explores these workers’ home working experiences, addressing a research gap and providing valuable insights for staff, organisations delivering public health services, and service users. Design and methods: This qualitative study explores home working experiences of 30 drug and alcohol support workers in northern England during the COVID-19 pandemic. Data collection included innovative digital methods: (1) digital timelines ( n = 16); (2) in-depth interviews ( n = 17); (3) five focus groups ( n = 12). Timeline text was treated as qualitative text data. Interviews and focus groups were recorded, transcribed, and coded. Data were subject to Framework Analysis. Results: Seven themes were identified: (1) Difficulty balancing and separating work and home life; (2) Importance of setup, infrastructure and conducive work environment; (3) The move to remote/home working – a process; (4) Convenience and efficiency benefits; (5) Loss of the social – reductions in social connectedness and feelings of isolation; (6) The importance of the ‘office’ for connection, communication, socialising, and information sharing; (7) Managing remotely – the development and implementation of strategies and ways of coping. Conclusions: While home working offers some benefits for substance use support workers, providers, and service users, it also introduces significant challenges. Understanding these is critical for service optimisation. A hybrid (in-person/remote) delivery model, combining home and co-located, office-based working may be optimal.

Today’s challenging times highlight the need for workplaces to support employee wellbeing. Workplaces can offer a means to improve employee wellbeing and promote health initiatives. However, small and medium-sized enterprises (SMEs) are less likely than larger organizations to engage with workplace wellbeing initiatives or offer wellbeing provision. This study, conducted in an urban area in central England, explores SME engagement with local government workplace wellbeing provision, and barriers and facilitators to SME engagement, SME implementation of wellbeing provision, and employee uptake. A mixed-methods design was used. Quantitative data were collected via a survey of 103 SMEs and qualitative data from three focus groups with stakeholders involved in promoting SME engagement with wellbeing support (n = 9) and 16 in-depth interviews with SME representatives (n = 8) and employees (n = 8). Quantitative data were analyzed using the chi-squared, Fisher’s exact and Mann-Whitney U tests, and multivariable logistic regression. Qualitative data were analyzed using framework analysis. Findings highlighted several interrelated factors acting as barriers and facilitators to SME engagement with wellbeing initiatives, SME-provided wellbeing provision, and employee uptake. The study provides valuable insights for policymakers, public health teams, and SME leaders on improving provision of and engagement with wellbeing programs. Trust, awareness, knowledge, and communication are highlighted as important prerequisites of optimal provision and engagement.

Background: Prevalence of depression is increasing in young people. Behaviour change interventions providing benefits equal to or greater than talking therapies or pharmacological alternatives are needed. Exercise could be beneficial for young people with depression, but we lack robust trials of its effectiveness. Objective: To test whether an exercise intervention targeting young people with depression is feasible, including recruitment and retention of young people, recruitment and training of exercise professionals and intervention delivery. Design: Three-arm cluster feasibility randomised controlled trial with embedded process evaluation and health economic data collection. Setting: Local community venues in Hertfordshire, Bedfordshire and Norfolk. Participants: Young people aged 13–17 years experiencing mild to moderate low mood or depression (indicated by scoring 17–36 on the Child Depression Inventory version 2) identified by mental health services, schools or self-referral. Interventions: Participants were randomised to one of three groups: high-intensity exercise, low-intensity exercise or a social activity control. Group sessions ran twice-weekly for 12 weeks delivered by registered exercise professionals, supported by mental health support workers. Main outcome measures: Referral, recruitment and retention rates; attendance at group sessions; adherence to and ability to reach intensity during exercise sessions; proportions of missing data, and adverse events measured at baseline and at 3 and 6 months; resource use; and reach and representativeness. Results: Of 321 referrals to the study, 173 were assessed for eligibility, and of the target sample size of 81, 15 were recruited and 14 were randomised (one withdrew). The retention rate was 71.4% and attendance at intervention sessions was > 67%; data completeness was > 80% for baseline assessments. Follow-up completion rate at 14 weeks was > 80% for most outcomes, with 50% for accelerometer data in the low-intensity group. Trial processes and the intervention were acceptable to young people. Barriers to and facilitators of intervention delivery were identified. Limitations: Findings highlighted challenges around recruitment, delivery of exercise interventions and informed ways of addressing barriers to recruitment for future studies. The study was conducted between October 2020 and August 2022 and consequently the COVID-19 pandemic had a disruptive impact on implementation. Conclusions: A large randomised trial of the effectiveness of the intervention is not feasible using the current study design, but issues relating to recruitment could be addressed with further work. Future work: Developing appropriate recruitment strategies via triage services, general practitioner practices, schools and social media and early engagement with the local Clinical Research Network to support recruitment to the study would address the significant shortfalls identified. Young people who are deemed unsuitable for mental health services should be followed up to be offered participation in such interventions. Collaborations between the NHS services and sports delivery partners should consider in-person contact with young people rather than remote consultations. Recruiting through general practitioner practices is effective and relatively inexpensive. The role of community engagement (socialmedia, public health agencies, community groups) needs to be further explored. Strong public and patient involvement and engagement via young people advisory groups is important to ensure that research is relevant to young people. Funding: This article presents independent research funded by the National Institute for Health and Care Research (NIHR) Health Technology Assessment programme as award number 17/78/10.

Background: Depression is common in people with chronic kidney disease, yet little is known about how depression is identified and managed as part of routine kidney care.Objectives: The primary objective was to survey all UK adult kidney centres to understand how depression is identified and managed. A secondary objective was to broadly describe the variability in psychosocial care.Design: Online survey.Methods: The survey comprised of three sections: (1) general kidney care, (2) psychological provision and (3) social work provision.Results: 48/68 (71%) of centres responded to the general survey with 20 and 13 responses from psychological and social work module respectively. Only 31.4% reported having both in centre psychological and social work practitioners. Three centres reported no access to psychosocial provision. Of the 25 centres who reported on pathways, 36.0% reported having internal pathways for the identification and management of depression. Within services with psychological provision, screening for depression varied across modality/group (e.g., 7.1% in mild/moderate chronic kidney disease vs. 62.5% in kidney donors). Cognitive Behavioural Therapy and Acceptance and Commitment Therapy were the most common interventions offered. Most psychosocial services were aware of the National Institute for Health and Care Excellence guidelines for managing depression in long‐term conditions (n = 18, 94.7%) yet few fully utilised (n = 6, 33.3%). Limited workforce capacity was evident.Conclusions: There is considerable variability in approaches taken to identify and treat depression across UK kidney services, with few services having specific pathways designed to detect and manage depression. Workforce capacity remains a significant issue.

Background: Depression is prevalent across the spectrum of Chronic Kidney Disease and associated with poorer outcomes. There is limited evidence regarding the most effective interventions and care pathways for depression in Chronic Kidney Disease.Objectives: To investigate how depression is identified and managed in adults with Chronic Kidney Disease.Design: Scoping review.Methods: Systematic search of eight databases with pre‐defined inclusion criteria. Data relevant to the identification and/or management of depression in adults with Chronic Kidney Disease were extracted.Results: Of 2147 articles identified, 860 were included. Depression was most identified using self‐report screening tools (n = 716 studies, 85.3%), with versions of the Beck Depression Inventory (n = 283, 33.7%) being the most common. A total of 123 studies included data on the management of depression, with nonpharmacological interventions being more frequently studied (n = 55, 45%). Cognitive Behavioural Therapy (n = 15) was the most common nonpharmacological intervention, which was found to have a significant effect on depressive symptoms compared to controls (n = 10). However, how such approaches could be implemented as part of routine care was not clear. There was limited evidence for antidepressants use in people with Chronic Kidney Disease albeit in a limited number of studies.Conclusions: Depression is commonly identified using validated screening tools albeit differences exist in reporting practices. Evidence regarding the management of depression is mixed and requires better‐quality trials of both pharmacological and nonpharmacological approaches. Understanding which clinical care pathways are used and their evidence, may help facilitate the development of kidney care specific guidelines for the identification and management of depression.

Background: Speech and language therapists and nurses need to work together to keep patients with swallowing difficulties safe throughout their acute stroke admission. Speech and language therapists make recommendations for safe swallowing following assessment and nurses put recommendations into practice and monitor how patients cope. There has been little research into the everyday realities of ongoing swallow safety management by these two disciplines. Patient safety research in other fields of healthcare indicates that safety can be enhanced through understanding the cultural context in which risk decisions are made.Aims: To generate new understanding for how speech and language therapists (SLTs) and nurses share information for ongoing management of swallows safety on stroke units.Methods & Procedures: An ethnographic methodology involving 40 weeks of fieldwork on three stroke wards in England between 2015 and 2017. Fieldwork observation (357 h) and interviews with 43 members of SLT and nursing staff. Observational and interview data were analysed iteratively using techniques from the constant comparative method to create a thematically organized explanation.Outcomes & Results: An explanation for how disciplinary differences in time and space influenced how SLT and nursing staff shared information for ongoing management of swallow safety, based around three themes: (1) SLTs and nurses were aligned in concern for swallow safety across all information‐sharing routes; however, (2) ambiguity was introduced by the need for the information contained in swallowing recommendations to travel across time, creating dilemmas for nurses. Patients could improve or deteriorate after recommendations were made and nurses had competing demands on their time. Ambiguity had consequences for (3) critical incident reporting and relationships. SLTs experienced dilemmas over how to act when recommendations were not followed.Conclusions & Implications: This study provides new understanding for patient safety dilemmas associated with the enactment and oversight of swallowing recommendations in context, on stroke wards. Findings can support SLTs and nurses to explore together how information for ongoing dysphagia management can be safely implemented within ward realities and kept up to date. This could include considering nursing capacity to act when SLTs are not there, mealtime staffing and SLT 7‐day working. Together they can review their understanding of risk and preferred local and formal routes for learning from it.What this paper adds: What is already known on the subject: It is known that information to keep swallowing safe is shared through swallowing recommendations, which are understood to involve a balance of risks between optimizing the safety of the swallow mechanism and maintaining physiological and emotional health. There is increasing appreciation from patient safety research, of the importance of understanding the context in which hospital staff make decisions about risk and patient safety. What this paper adds to existing knowledge: The paper provides new empirical understanding for the complexities of risk management associated with SLT and nursing interactions and roles with respect to ongoing swallow safety. What are the potential or actual clinical implications of this work?: Findings can underpin SLT and nurse discussion about how swallow safety could be improved in their own settings.

Purpose: To explore how speech-language pathologists and nurses share information about the communication support needs of stroke patients through structured information-sharing routes and to consider how the two disciplines view their roles and interdependencies in addressing these needs. Method: Speech-language pathologist and nurse information-sharing was explored in context using ethnography. Ethnography has been used by researchers from other disciplines to understand the context of inpatient care, but the methodology has rarely been adopted within speech-language pathology. Fieldwork (357 hours) was carried out on three stroke wards in England for 40 weeks from 2015 to 2017. Data included fieldnotes, interviews with 43 members of speech-language pathology and nursing staff, and the patient records of 19 patients. Result: The findings provide a thematically organised explanation for how information about communication travelled through structured routes on the wards (meetings, the patient record, bedside signs, education, and nursing handover). Limitations were identified that appear underpinned by disciplinary differences in (1) how speech-language pathologists and nurses engaged with the wards in time and space, and (2) perceptions of roles and interdependencies. Speech-language pathologists routinely used meetings and the patient record to share communication information, however these formal structures were not easily accessible during nurses’ caregiving roles. In addition, both speech-language pathologists (SLPs) and nurses were ambivalent about the usefulness of signage SLPs sometimes left at the bedside for supporting communication. There was little interdependency between SLP and nursing roles in meeting the communication support needs of patients. Conclusion: In-depth exploration of the context within which SLPs and nurses share information has revealed limitations in the capacity of structured routes to enhance collective knowledge about patients’ communication support needs.

This year marks the completion of the inaugural Warwick Medical School Leadership programme. The programme was set up to meet student interest and the need for an effective medical student leadership curriculum highlighted by the UK General Medical Council, the NHS Leadership Academy and The King’s Fund. The programme’s aim is to help produce valued future leaders of the NHS. It focuses on creating an engaging and inclusive curriculum for time poor students from a variety of backgrounds. To achieve this aim, we needed to not only give our students a foundation in leadership skills but empower and inspire them to continue developing these skills outside the course. We devised 5 components to the course, not only to teach the basics but also to support students in building a network of resources and leadership mentors. Students were given tasks to use these tools to understand their benefits for their own ongoing projects . Within each of the course’s assessments students showed an understanding and enthusiasm for the course. Comparing their initial ‘project plan’ assessment and the final summative reflection, all students demonstrated a developing understanding of leadership roles, greater personal insight and the desire and confidence to develop as a leader. Within the summative reflection, all students stated the course had a positive impact on their current leadership roles Within the end of course feedback, when asked what they found helpful about the course, students described developing a support network of peers and mentors, interesting and thought provoking seminars and a new confidence to take on new leadership positions and projects. We are very pleased with how the first year has been received by the students. We recommend other universities encourage similar courses to run. The course has so far proven self-sustaining, with its students developing the skills required to continue its development and the enthusiasm to take over its leadership.