Dr Danielle Varley

Background Non-attendance at initial appointments is a widespread problem which affects mental health services and patients. Methods This mixed methods systematic review identified and synthesised the available literature on factors, which could be modified either by patients or by services, that can influence early attrition to services offering psychological support for common mental health problems. Searches were conducted January 2017, updated Oct 2019, in MEDLINE, CINAHL Plus, EMBASE, Cochrane Library and PsycINFO. Screening, data extraction and quality appraisal were completed independently by two reviewers. Quality appraisals used Joanna Briggs Institute tools. Results Of the 31,758 references identified (21,123 unique), 34 studies were selected for inclusion. Studies used cohort (14), cross-sectional (10) and qualitative (9) designs. An additional study reported both quantitative and qualitative components. Findings from observational studies related to the presenting problem, beliefs about symptoms and treatment, contact with services, practical challenges and social support. Themes from qualitative studies centred around individual perceptions of symptoms and support, social and cultural influences, experiences with services and practical issues. Similarities and differences between quantitative and qualitative syntheses are discussed in a combined synthesis. Limitations This review did not attempt to measure the effect of factors affecting attendance, or the effectiveness of interventions to reduce non-attendance to initial treatment appointments. Conclusions Ensuring treatments offered matched patient perceptions of problems, reducing patient concerns around engagement, and offering prompt responses with flexibility to accommodate patient circumstances consistently influenced initial attendance. More work is needed to improve perceptions of mental health services in the community.

Background: This study explored how the COVID-19 outbreak and arrangements such as remote working and furlough affect work or study stress levels and functioning in staff and students at the University of York, UK.

Methods: An invitation to participate in an online survey was sent to all University of York staff and students in May-June 2020. We measured stress levels [VAS-scale, Perceived Stress Questionnaire (PSQ)], mental health [anxiety (GAD-7), depression (PHQ-9)], physical health (PHQ-15, chronic medical conditions checklist), presenteeism, and absenteeism levels (iPCQ). We explored demographic and other characteristics as factors which may contribute to resilience and vulnerability for the impact of COVID-19 on stress.

Results: One thousand and fifty five staff and nine hundred and twenty five students completed the survey. Ninety-eight per cent of staff and seventy-eight per cent of students worked or studied remotely. 7% of staff and 10% of students reported sickness absence. 26% of staff and 40% of the students experienced presenteeism. 22–24% of staff reported clinical-level anxiety and depression scores, and 37.2 and 46.5% of students. Staff experienced high stress levels due to COVID-19 (66.2%, labeled vulnerable) and 33.8% experienced low stress levels (labeled resilient). Students were 71.7% resilient vs. 28.3% non-resilient. Predictors of vulnerability in staff were having children [OR = 2.23; CI (95) = 1.63–3.04] and social isolation [OR = 1.97; CI (95) = 1.39–2.79] and in students, being female [OR = 1.62; CI (95) = 1.14–2.28], having children [OR = 2.04; CI (95) = 1.11–3.72], and social isolation [OR = 1.78; CI (95) = 1.25–2.52]. Resilience was predicted by exercise in staff [OR = 0.83; CI (95) = 0.73–0.94] and in students [OR = 0.85; CI (95) = 0.75–0.97].

Discussion: University staff and students reported high psychological distress, presenteeism and absenteeism. However, 33.8% of staff and 71.7% of the students were resilient. Amongst others, female gender, having children, and having to self-isolate contributed to vulnerability. Exercise contributed to resilience.

Conclusion: Resilience occurred much more often in students than in staff, although psychological distress was much higher in students. This suggests that predictors of resilience may differ from psychological distress per se. Hence, interventions to improve resilience should not only address psychological distress but may also address other factors.

Abstract

Abstract

Recent systematic reviews have reported a positive, although modest, effect of probiotics in terms of preventing common cold symptoms. In this systematic review, the effect of probiotics, specifically Lactobacillus and Bifidobacterium strains, on the duration of acute respiratory infections in otherwise healthy children and adults was evaluated. To identify relevant trials, eight databases, including MEDLINE, Embase, the Cochrane Database of Systematic Reviews (CDSR), the Cochrane Central Register of Controlled Trials (CENTRAL), the Database of Abstracts of Reviews of Effects (DARE), Health Technology Assessment (HTA), Science Citation Index (SCI) and OAISTER, were searched from inception to 20 July 2012. Details regarding unpublished studies/databases were also obtained from probiotic manufacturers. Study selection, data extraction and quality assessment were carried out by two reviewers. Risk of bias was assessed using criteria adapted from those published by the Centre for Reviews and Dissemination. In this review, twenty randomised controlled trials (RCT) were included, of which twelve were considered to have a low risk of bias. Meta-analysis revealed significantly fewer numbers of days of illness per person (standardised mean difference (SMD) − 0·31 (95 % CI − 0·41, − 0·11), I2= 3 %), shorter illness episodes by almost a day (weighted mean difference − 0·77 (95 % CI − 1·50, − 0·04), I2= 80 %) (without an increase in the number of illness episodes), and fewer numbers of days absent from day care/school/work (SMD − 0·17 (95 % CI − 0·31, − 0·03), I2= 67 %) in participants who received a probiotic intervention than in those who had taken a placebo. Reasons for heterogeneity between the studies were explored in subgroup analysis, but could not be explained, suggesting that the effect sizes found may differ between the population groups. This systematic review provides evidence from a number of good-quality RCT that probiotics reduce the duration of illness in otherwise healthy children and adults.

Background:Since 2005, International Committee of Medical Journal Editors (ICMJE) member journals have required that clinical trials be registered in publicly available trials registers before they are considered for publication. Objectives:The research explores whether it is adequate, when searching to inform systematic reviews, to search for relevant clinical trials using only public trials registers and to identify the optimal search approaches in trials registers. Methods:Asearchwasconductedin Clinical Trials.gov and the International Clinical Trials Registry Platform (ICTRP) for research studies that had been included in eight systematic reviews. Four search approaches (highly sensitive, sensitive, precise, and highly precise) were performed using the basic and advanced interfaces in both resources. Results:On average, 84% of studies were not listed in either resource. The largest number of included studies was retrieved in Clinical Trials.gov and ICTRP when a sensitive search approach was used in the basic interface. The use of the advanced interface maintained or improved sensitivity in 16 of 19 strategies for Clinicaltrials.gov and 8 of 18 for ICTRP. No single search approach was sensitive enough to identify all studies included in the 6 reviews. Conclusions:Trials registers cannot yet be relied upon as the sole means to locate trials for systematic reviews. Trials registers lag behind the major bibliographic databases in terms of their search interfaces. Implications:For systematic reviews, trials registers and major bibliographic databases should be searched. Trials registers should be searched using sensitive approaches, and both the registers consulted in this study should be searched.

Background Differences in the way autistic children experience the world can contribute to anxiety and stress. Carol Gray’s Social Stories™ are a highly personalised intervention to support children by providing social information about specific situations in an individual story. Objectives This randomised controlled trial aimed to establish whether Social Stories are clinically effective and cost-effective in improving social responsiveness and social and emotional health in children on the autism spectrum in schools. Design A multisite pragmatic cluster randomised controlled trial comparing Social Stories with care as usual. Setting Eighty-seven schools (clusters) across Yorkshire and the Humber. Participants Two hundred and forty-nine children were randomised via a bespoke system hosted at York Trials Unit (129 Social Stories and 120 care as usual). Recruitment was completed in May 2021. Participants were children aged 4–11 years with a diagnosis of autism, alongside teachers, interventionists and caregivers. Recruitment was via schools, NHS trusts, support groups and local publicity. Intervention The intervention included training for educational professionals and caregivers covering psychoeducation and implementation of Social Stories. Stories were written around contextualised goals around the child’s need for social information. Interventionists read the Social Story™ with the child at least six times over 4 weeks during school. Main outcome measure The primary outcome was the Social Responsiveness Scale-2 completed by teachers at 6 months (the primary end point), which measures social awareness, cognition, communication and behaviour. Data were collected from caregivers and educational professionals at 6 weeks and 6 months through questionnaires. Blinding of participants was not possible. Results At 6 months, the estimated difference in expected teacher-reported Social Responsiveness Scale-2 T-score (the primary end point) was −1.61 (95% confidence interval −4.18 to 0.96, p = 0.220), slightly favouring the intervention group. The estimated differences for the parent-reported secondary outcomes at 6 months were small and generally favoured the control group except the measure of children’s quality-adjusted life-year (+ 0.001, 95% confidence interval −0.032 to 0.035) and parental stress (−1.49, 95% confidence interval −5.43 to 2.46, p = 0.460), which favoured the intervention group. Children in the intervention group met their individual goals more frequently than children who received usual care alone (0.97 confidence interval 0.21 to 1.73, p = 0.012). The intervention is likely to save small costs (−£191 per child, 95% confidence interval −767.7 to 337.7) and maintain a similar quality of life compared to usual care. The probability of Social Stories being a preferred option is 75% if the society is willing to pay £20,000 per quality-adjusted life-year gained. Limitations include considerable disruptions during the coronavirus disease 2019 pandemic. Conclusion Social Stories are used in schools and represent a low-cost intervention. There is no clinically evident impact on social responsiveness, anxiety and/or depression, parental stress or general health. Benefits were observed for specific behavioural goals as assessed by the teacher, and Social Stories may serve as a useful tool for facilitating dialogue between children and school staff to address specific behavioural challenges. Usage should be at the school’s discretion.

Objectives To assess the cost-effectiveness of LEGO-based therapy compared with usual support. Design Cost-utility analysis alongside randomised control trial. Setting Mainstream primary and secondary schools in the UK. Participants 248 children and young people (CYP) with autism spectrum disorder (ASD) aged 7–15 years. Intervention LEGO-based therapy is a group social skills intervention designed specifically for CYP with ASD. Through play, CYP learn to use the skills such as joint attention, sharing, communication and group problem-solving. CYP randomised to the intervention arm received 12 weekly sessions of LEGO-based therapy and usual support, while CYP allocated to control arm received usual support only. Main outcome measures Average costs based on National Health Service (NHS) and personal social services perspective and quality-adjusted life years (QALYs) measured by EQ-5D-Y over time horizon of 1 year were collected during the trial. Incremental cost-effectiveness ratio (ICER) was calculated, and non-parametric bootstrapping was conducted. The uncertainty around the ICER estimates was presented using cost-effectiveness acceptability curve (CEAC). A set of sensitivity analyses were conducted to assess the robustness of the primary findings. Results After adjustment and bootstrapping, on average, CYP in LEGO-based therapy group incurred less costs (incremental cost was −£251 (95% CI −£752 to £268)) and gained marginal improvement in QALYs (QALYs gained 0.009 (95% CI −0.008 to 0.028)). The CEAC shows that the probability of LEGO-based therapy being cost-effective was 94% at the willingness-to-pay threshold of £20 000 per QALY gained. Results of sensitivity analyses were consistent with the primary outcomes. Conclusion Compared with usual support, LEGO-based therapy produced marginal reduction in costs and improvement in QALYs. Results from both primary and sensitivity analyses suggested that LEGO-based therapy was likely to be cost-effective.

Background Social skills interventions are commonly recommended to help children and young people with autism spectrum disorder develop social skills, but some struggle to engage in these interventions. LEGO® (LEGO System A/S, Billund, Denmark) based therapy, a group social skills intervention, aims to be more interesting and engaging. Objective To evaluate the clinical effectiveness of LEGO® based therapy on the social and emotional skills of children and young people with autism spectrum disorder in school settings compared with usual support. Secondary objectives included evaluations of cost-effectiveness, acceptability and treatment fidelity. Design A cluster randomised controlled trial randomly allocating participating schools to either LEGO® based therapy and usual support or usual support only. Setting Mainstream schools in the north of England. Participants Children and young people (aged 7–15 years) with autism spectrum disorder, their parent/guardian, an associated teacher/teaching assistant and a facilitator teacher/teaching assistant (intervention schools only). Intervention Schools randomised to the intervention arm delivered 12 weekly sessions of LEGO® based therapy, which promotes collaborative play and encourages social problem-solving in groups of three children and young people with a facilitator (trained teacher or teaching assistant). Participants received usual support from school and community services. Participants in the control arm received usual support only. Research assistants and statisticians were blind to treatment allocation. Main outcome measure The social skills subscale of the Social Skills Improvement System (SSIS), completed by the children and young people’s unblinded teacher pre randomisation and 20 weeks post randomisation. The SSIS social skills subscale measures social skills including social communication, co-operation, empathy, assertion, responsibility and self-control. Participants completed a number of other pre- and post-randomisation measures of emotional health, quality of life, loneliness, problem behaviours, academic competence, service resource utilisation and adverse events. Results A total of 250 children and young people from 98 schools were randomised: 127 to the intervention arm and 123 to the control arm. Intention-to-treat analysis of the main outcome measure showed a modest positive difference of 3.74 points (95% confidence interval –0.16 to 7.63 points, standardised effect size 0.18; p = 0.06) in favour of the intervention arm. Statistical significance increased in per-protocol analysis, with a modest positive difference (standardised effect size 0.21; p = 0.036). Cost-effectiveness of the intervention was found in reduced service use costs and a small increase in quality-adjusted life-years. Intervention fidelity and acceptability were positive. No intervention-related adverse events or effects were reported. Conclusions The primary and pre-planned sensitivity analysis of the primary outcome consistently showed a positive clinical difference, with modest standardised effect sizes of between 0.15 and 0.21. There were positive health economics and qualitative findings, corroborated by the difference between arms for the majority of secondary outcomes, which were not statistically significant but favoured the intervention arm. Post hoc additional analysis was exploratory and was not used in drawing this conclusion. Given the small positive change, LEGO® based therapy for children and young people with autism spectrum disorder in schools should be considered. Limitations The primary outcome measure was completed by an unblinded teacher (rather than by the facilitator). Future work The study team recommends future research into LEGO® based therapy, particularly in school environments.

Postmenopausal women with advanced breast cancer recurring/progressing on or after initial (adjuvant or first-line) endocrine therapy may be treated multiple times with one of several endocrine or combinatorial targeted treatment options before initiating chemotherapy. In the absence of direct head-to-head comparisons of these treatment options, an indirect comparison can inform treatment choice. This network meta-analysis compared the efficacy of everolimus plus exemestane with that of fulvestrant 250 and 500 mg in the advanced breast cancer setting following adjuvant or first-line endocrine therapy. The reported hazard ratios (HRs) for progression-free survival (PFS) or time to progression from six studies that formed a network to compare everolimus plus exemestane (BOLERO-2 trial) with fulvestrant were analyzed by means of a Bayesian network meta-analysis. In the primary comparison (PFS analysis based on the local review of disease progression from BOLERO-2 with the data from the other studies), everolimus plus exemestane appeared to be more efficacious than both fulvestrant 250 mg (HR = 0.47; 95 % credible interval [CrI] 0.38-0.58) and 500 mg (HR = 0.59; 95 % CrI 0.45-0.77). Similar results were obtained in an alternate comparison based on central review of disease progression from BOLERO-2 with the data from the other studies (HR = 0.40; 95 % CrI 0.31-0.51 and HR = 0.50; 95 % CrI 0.37-0.67, respectively), and in a subgroup analysis of patients who had received prior aromatase inhibitor therapy (HR = 0.47; 95 % CrI 0.38-0.58 and HR = 0.55; 95 % CrI 0.40-0.76, respectively). These results suggest that everolimus plus exemestane may be more efficacious than fulvestrant in patients with advanced breast cancer who progress on or after adjuvant or first-line therapy with a nonsteroidal aromatase inhibitor. © 2013 The Author(s).

Background Conversion disorder/functional neurological disorder (CD/FND) occurs often in neurological settings and can lead to long-term distress, disability and demand on health care services. Systemic low-grade inflammation might play a role, however, the pathogenic mechanism is still unknown. Aim 1) To explore the feasibility to establish and assess a cohort of CD/FND with motor symptoms, involving persons with lived experience (PPI). 2) To generate proof of concept regarding a possible role for cytokines, microRNA, cortisol levels and neurocognitive symptoms in patients with motor CD/FND. Method Feasibility study. Results The study showed active involvement of patients despite high clinical illness burden and disability, neurocognitive symptoms, childhood adverse experiences (ACE) and current life events. The study provided valuable knowledge regarding the feasibility of conducting a study in these patients that will inform future study phases. In the sample there were elevated levels of IL6, IL12, IL17A, IFNg, TNFa and VEGF-a, suggesting systemic low-grade inflammation. Also, microRNAs involved in inflammation and vascular inflammation were correlated with TNFa and VEGFa respectively, suggesting proof of concept for an epigenetic mechanism. Owing to the COVID-19 outbreak, the patient sample was limited to 15 patients. Conclusion It is a novelty that this study is conducted in the clinical setting. This innovative, translational study explores stress-related SLI in CD/FND patients and the feasibility of a larger project aiming to develop new treatments for this vulnerable population. Given the positive findings, there is scope to conduct further research into the mechanism of disease in CD/FND.

Objectives This study establishes research priorities for medically not yet explained symptoms (MNYES), also known as persistent physical symptoms or medically unexplained symptoms, from the perspective of patients, caregivers and clinicians, in a priority setting partnership (PSP) following the James Lind Alliance (JLA) approach. Research into such symptoms in general has been poorly funded over the years and so far has been primarily researcher-led with minimal input from patients, caregivers and clinicians; and sometimes has been controversial. Design JLA PSP method. The PSP termed these symptoms MNYES. Methods The study was conducted according to the JLA’s detailed methodology for conducting priority setting exercises. It involved five key stages: defining the appropriate term for the conditions under study by the PSP Steering Group; gathering questions on MNYES from patients, caregivers and clinicians in a publicly accessible survey; checking these research questions against existing evidence; interim prioritisation in a second survey; and a final multi-stakeholder consensus meeting to determine the top 10 unanswered research questions using the modified nominal group methodology. Results Over 700 responses from UK patients, caregivers and clinicians were identified in the two surveys and charities contributed from a broad range of medical specialties and primary care. The final top 10 unanswered research questions cover, among others: treatment strategies, personalisation of treatment, collaborative care pathways, training for clinicians and outcomes that matter to patients.

Objective To date, there have been no reviews bringing together evidence on the clinical management of functional neurological disorder (FND) and patients', caregivers', and healthcare workers' experiences. This review provides an overview of the literature focused on the clinical management of FND. Methods Four databases were searched, and a consultation exercise was conducted to retrieve relevant records dated from September 2010 to September 2020. Articles documenting diagnostic methods, treatments or interventions, or the experiences and perspectives of patients and healthcare workers in the clinical management of FND were included. Results In total, 2756 records were retrieved, with 162 included in this review. The diagnostic methods reported predominantly included positive clinical signs, v-EEG and EEG. Psychological treatments and medication were the most reported treatments. Mixed findings of the effectiveness of CBT were found. Haloperidol, physiotherapy and scripted diagnosis were found to be effective in reducing FND symptoms. Several facilitators and barriers for patients accessing treatment for FND were reported. Conclusion The literature describing the clinical management for FND has increased considerably in recent times. A wide variety of diagnostic tools and treatments and interventions were found, with more focus being placed on tests that confirm a diagnosis than ‘rule-out’ tests. The main treatment type found in this review was medication. This review revealed that there is a lack of high-quality evidence and reflects the need for official clinical guidelines for FND, providing healthcare workers and patients the support needed to navigate the process to diagnose and manage FND.

Background: In recent years, the rates of young people presenting with self-harming have increased dramatically, with self-harm being a predictor of suicide. Despite evidence suggesting that self-harm is common in young people and that hospital admissions are increasing, research exploring the reasons behind young people’s motivations is not easily accessed. Systematic reviews have explored this from a range of perspectives, but none have drawn all this literature together. Methods: A systematic review of systematic reviews was conducted in accordance with PRISMA guidelines. Seven databases were searched using a peer reviewed search strategy, with a focus on the factors of child and adolescent self-harming. All English language articles, published between 2008 and 2021, were considered, and screened against inclusion criteria. References of included articles were also searched for eligible articles. Results: Twenty-two systematic reviews were included after screening against eligibility criteria. Narrative synthesis identified eight themes for motivation or reasons for self-harming: identity and subcultures, peer influences, educational stressors, mental ill health, cognitive and neuropsychological factors, trauma and attachment, internet influences and social media. Conclusion: Reasons for self-harming in adolescents are complex and multifactorial. Many studies focus on single causes or associations with self-harm rather than open-mindedly exploring a range of factors or the interactions between them. This leaves gaps in the research where hypothetical reasons for self-harm have not been systematically explored. The themes identified here could help in the clinical assessment process and guide future research in this area, including the development of potential differentiated prevention and treatment approaches.

Social learning through friendships is important in child development. Autistic children often initiate and engage in social interactions differently than neurotypical peers. LEGO® based therapy is a group intervention which facilitates social interactions with peers using collaborative LEGO® play. A 1:1 cluster randomised controlled trial with autistic children aged 7–15 comparing 12 weeks’ LEGO® based therapy and usual support to usual support alone in 98 mainstream schools (2017–2019) was carried out. The primary outcome was social skills (Social Skills Improvement System) completed by unblinded teachers (not intervention deliverers) at 20 weeks. Analysis used intention-to-treat. Fifty intervention schools (127 participants) and 48 control schools (123 participants) were allocated. Primary analysis included 45 intervention schools (116 participants) and 42 control schools (101 participants). The between-arms difference was 3.74 (p = 0.06, 95% confidence interval: −0.16, 7.63) and 1.68 (p = 0.43, 95% confidence interval: −2.51, 5.87) at 20 and 52 weeks (0.18 and 0.08 standardised effect sizes). Twenty-week outcomes for those receiving per protocol intervention were 4.23 (95% confidence interval 0.27, 8.19) with a standardised effect size of 0.21. Sensitivity estimates were between 3.10 and 4.37 (0.15–0.21 standardised effect sizes). Three unrelated serious adverse events were reported. LEGO® based therapy has a small positive non-significant benefit for social skills at 20 weeks but not 52 weeks.

Background Autistic children can experience mental health, social and emotional difficulties. Carol Gray's Social Stories™ are a highly personalised intervention that provide social information in a short individually tailored story. Methods A multi-site pragmatic cluster randomised controlled trial to evaluate the clinical and cost-effectiveness of Social Stories™ alongside care as usual in autistic children aged 4–11 years. The primary outcome was the Social Responsiveness Scale-2 completed by teachers 6 months post-randomisation, analysed on an intention-to-treat basis. Trial Registration: ISRCTN11634810. Results Eighty-seven schools, including 249 children, were randomised (intervention 44 schools with 129 children, and usual care 43 schools with 120 children). After 6 months, a reduction of 1.61 points was found on the Social Responsiveness Scale-2 in the intervention group (95% CI −4.18 to 0.96, p = .220) and for those who attended at least six sessions a reduction of 3.37 points (CACE 95% CI −6.65 to −0.10, p = .043). Children in the intervention group met their individual socio-emotional goal more frequently than children receiving usual care alone and this was statistically significant. No statistically significant differences were found in other secondary outcomes including anxiety, depression, general health or parental stress. Conclusions Social Stories™ represent a low-cost, low-burden intervention. Benefits are seen in individual socio-emotional goals but without clinically evident impact on social responsiveness, anxiety, depression, parental stress or general health.

Background This project arose from discussions between the NHS Intgrated Care Board, Leeds City Council and Universities in West Yorkshire, UK which recognised the need to develop a core outcome set to capture the impact of voluntary and community sector organisations’ (VCSO) activities on health and wellbeing, in a way that can be routinely integrated with existing datasets on health and care activity across the region. This is a public health priority because the reach and impact of community organisations is a crucial mechanism in tackling health inequalities, and the NHS Long term plan includes a shift to health provision in community settings. Methods Following public engagement workshops, and community conversations held between the WYICB Research Engagement Network community research champions and members of the public, a World Café event was held in a community venue to collect views from a range of stakeholders: academic, policy, health and care services, VCSOs and community champions. Discussions were grouped around 6 table themes: Administrative burden; Core data & outcomes; Relationships of trust; What would good look like; Measures into intelligence; Next steps for action and feedback. Discussions were recorded, transcribed and analysed using thematic analysis. Results 71 stakeholders attended from a range of sectors. Following line by line coding the data was organised under the following themes: Administrative burden; Appropriateness of outcome measures; Language issues; Data security concerns; Diversity and inclusiveness; Training; Infrastructure; Community engagement; Power dynamics; Communication; Ownership of the data. Conclusions If a core outcomes set for VCSO activity in West Yorkshire is to be successful, community organisations must be supported to collect, manage and share ownership of the data. The data itself must be relevant, appropriate and of value to communities, and the reasons for collecting it must be clearly explained. Key messages • Involving community organisations as equal partners in developing core outcomes sets to monitor their impact on health and wellbeing gives valuable insights into concerns of underrepresented groups. • Co-developing a core outcome set with community organisations that is relevant, appropriate, shared and easy to explain may increase response rates and fill in knowledge gaps in diverse communities.

The cost-of-living crisis has led to many people across the UK struggling to pay for essentials such as heating or eating. For those who were already living in poverty, increasing costs have brought additional challenges. Calderdale Council recognised the added challenges local people are facing and implemented a number of initiatives to support them. One initiative funded Voluntary, Community and Social Enterprise (VCSE) organisations to provide Warm Spaces. Warm Spaces, or warm hubs, are safe and friendly places where someone can go to keep warm during the day, throughout the winter months.

The cost-of-living crisis has led to many people across the UK struggling to pay for essentials such as heating or eating. For those who were already living in poverty, increasing costs have brought additional challenges. Calderdale Council recognised the added challenges local people are facing and implemented a number of initiatives to support them. One initiative funded Voluntary, Community and Social Enterprise (VCSE) organisations to provide Warm Spaces. Warm Spaces, or warm hubs, are safe and friendly places where someone can go to keep warm during the day, throughout the winter months.

During Spring/Summer 2025, the Centre for Health Promotion Research are leading a series of discussions for local and national partners about the voluntary sector, learning disabilities, and digital inequalities. These discussions are for academics, community and civil society organisations, local authorities, and service users to discuss current research and priorities for the future. The first event was a webinar on Wednesday 21st May 2025, 12:00-13:00. Kris Southby, Anne-Marie Bagnall, Danielle Varley, and Jo Trigwell will share the results of an NIHR School for Social Care study about how community organisations can effectively use digital technology to delivery services to adults with learning disabilities and/or autism. The webinar was attended by 44 people from universities, local and national government, the voluntary sector, and NHS

Background Technology is seen as a way to improve quality and reduce the cost of social care services. Voluntary and community sector organisations (VCSOs) are also becoming more involved in delivering social care services to adults with intellectual disabilities and/or autism. However, there is not enough information to help VCSOs use technology in the best way to deliver services. The aim of this research is to explore how VCSOs can appropriately use digital technologies alongside or instead of in-person activity (hybrid delivery) to provide services to different adults with intellectual disabilities and/or autism. Methods We conducted a participatory realist review. Workshops were held with service users and VCSOs to refine the scope of the review and develop preliminary theories. A systematic search of academic and grey literature was then carried out, including academic databases, website searches, and a call for evidence. Following screening, extraction, and synthesise, a deliberative hearing was held with service users and VCSOs to discuss emergent findings, refine theories, and develop conclusions. Results 141 papers were included in the review, although very few were specifically about how VCSOs use technology as part of their service delivery with people with learning disabilities and/or autism. Different technologies can have specific benefits for adults with learning disabilities and/or autism in different contexts. ‘Good’ hybrid service delivery requires co-production of services between users and VCSOs, and support that goes beyond just providing access to equipment. Conclusions VCSOs can use technology in a myriad of ways but there is limited guidance about how to do this appropriately with adults with learning disabilities and/or autism. We propose six ‘top tips’ as a starting point to help VCSOs.

Background During the Covid-19 pandemic there was a significant rise in health and care services delivering services remotely, including by voluntary and community sector organisations (VCSOs) to adults with learning disabilities and/or autistic people. However, there was not enough research evidence of how different technologies are used, what works well or not well, for whom, and in what circumstances to support the diverse needs of adults with learning disabilities and/or autistic people. To address this evidence gap, Leeds Beckett University carried out a participatory realist review in partnership with 100% Digital Leeds, Pyramid and the Autism and Learning Disabilities Digital Inclusion Network (ALaDDIN) to explore how VCSOs can appropriately use digital technologies alongside or instead of in-person activity (hybrid delivery) to provide social care services to different adults with learning disabilities and/or autistic people. Methods This briefing is based on the findings of the participatory realist review. The research involved: • Five workshop and focus group discussions with people with learning disabilities and/or autistic people and representatives from VCSOs who worked with them, • A comprehensive review of relevant published research, guidance and policy, and • A deliberative hearing event to bring together findings from research and lived experience Results Everyone has the right to choose how they engage with the digital world! The workshop discussions and preliminary literature review produced 13 areas of interest that we explored in the realist review. The review included 141 articles in total and, following our discussions of the findings with service deliverers and users at the deliberative hearing event, led to six top tips for VCSOs using digital technology for delivering services to people with learning disabilities and/or autistic people.

Background Community organisations started using technology like video conferencing and social media more during the Covid-19 pandemic to keep doing activities with adults with learning disabilities and autism. They are now trying to figure out the best ways to combine technology and face-to-face activities. We wanted to find out the different ways that these community organisations combine technology and face-to-face activities and what works well. Methods We looked at published research about how community organisations use technology to provide services for adults with learning disabilities and autism. We held an event for community organisations and adults with learning disabilities and autism. We talked about what we had found out and heard peoples’ experiences of using technology. Results There is lots of research that includes community organisations using technology. Having a choice about whether to use technology is really important. Using technology can make it easier for people with learning disabilities and autism to join in if they have the right equipment, skills, and support. But there is no information about what community organisations need to use technology to delivery services for adults with learning disabilities and autism. Conclusion Supporting people with learning disabilities and autism to use technology can improve their independence and life skills. But there is not a lot of information for community groups to help them do this. We have applied for funding to do more research about this.

Background Delivery of health and care services using a combination of remote and/or in-person channels and digital and/or traditional tools (Hybrid Service Delivery, HSD) is increasingly seen as a way of improving quality and affordability, improving access, personalisation and sustainability, and reducing inequalities. Across the voluntary, community and social enterprise sector (VCSE), using a combination of remote and/or in-person channels and digital and/or traditional tools (HSD) has enabled the essential provision of services for people who have learning disabilities and/or autistic (LDA). However, it is unclear how different tools and channels have been used, what worked well or not well, for whom, and in what circumstances. The aim of this realist review is to explore how VCSE organisations can effectively use digital technologies alongside or instead of in-person activity to provide social care services to adults with learning disabilities and/or autism. This review protocol is presented in accordance with the Preferred Reporting Items for Systematic Review and Meta-Analysis Protocol (PRISMA-P). Methods We will conduct a participatory realist review. Following realist review methodology, and involving people with LDA and organisations who deliver services to them, we will define the scope of the review/theory development, search for and appraise evidence, extract and synthesise findings, and develop the narrative. Using a developed strategy, electronic databases (Academic Search Complete, CINAHL, MEDLINE, PsycInfo, SCOPUS, Social Science Citation Index and Social Policy and Practice) will be searched. A data extraction table will be used to assist in sifting, sorting and organising relevant information from identified studies. For each proposition statement, relevant data from the identified literature will be synthesised and compared with the proposed theory to develop an understanding of how, why and when hybrid delivery works in different settings with different populations. Discussion This review aims to collate and synthesise evidence relating to hybrid service delivery in VCSE organisations to provide social care services to LDA adults. By conducting a participatory realist review, we anticipate that the findings will lead to a greater understanding of contextual factors and therefore more relevant recommendations.

Background aims Community organisations started using technology like video conferencing and social media more during the Covid-19 pandemic to keep doing activities with adults with learning disabilities and autism. They are now trying to figure out the best ways to combine technology and face-to-face activities. We wanted to find out the different ways that these community organisations combine technology and face-to-face activities and what works well. Methods We looked at published research about how community organisations use technology to provide services for adults with learning disabilities and autism. We held an event for community organisations and adults with learning disabilities and autism. We talked about what we had found out and heard peoples’ experiences of using technology. Results There is lots of research that includes community organisations using technology. Having a choice about whether to use technology is really important. Using technology can make it easier for people with learning disabilities and autism to join in if they have the right equipment, skills, and support. But there is no information about what community organisations need to use technology to delivery services for adults with learning disabilities and autism. Conclusion Supporting people with learning disabilities and autism to use technology can improve their independence and life skills. But there is not a lot of information for community groups to help them do this. We have applied for funding to do more research about this.

Background Hybrid service delivery (HSD), involving the utilisation of both in-person and remote delivery for service provision, has been noted as a way of improving quality and affordability, increasing access and reducing inequalities. While HSD has facilitated the provision of services for people with learning disabilities and/or autism across the voluntary, community and social enterprise sector (VCSE), it is not apparent how HSD has been used, what worked well or not well, for whom, and in what circumstances. This study aimed to explore how VCSE organisations could effectively use digital technologies alongside or instead of in-person activity to provide social care services to adults with learning disabilities and/or autism. Methods A participatory realist review methodology was utilised. Programme theories and propositions about the phenomenon and related concepts were identified utilising preliminary literature searches and co-production workshops with service providers and service users. The developed statements were used to guide the database and the identification of evidence. This evidence was used to test and refine the statements. Results 141 records were used to produce 13 areas of interest. While there was strong evidence supporting the use of digital technology to improve social connections and independence, this was only the case when the technology was used correctly, implemented in a suitable setting and ‘fit’ the person using it. Evidence indicated that the development or adaptation of technology which were co-produced with adults with learning disabilities and/or autism were associated with better service delivery. Conclusions Supporting adults with learning disabilities and autism to use technology can improve their independence and life skills. However, the technology needs to be implemented in the right setting, as well as co-production being used to ensure the technology and the delivery is suitable and accessible. Key messages • There is evidence that digital technologies can be used to support people with learning disabilities and autistic people, but only if it is used correctly and in the right setting. • Utilise co-production to shape tech-enabled services. Consider language use, visuals and technology delivery. Listen to their ideas, so the technology delivers what they want and need.