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Objective The proportion of people having home dialysis for kidney disease varies considerably by treating centre, socioeconomic deprivation levels in the area and to some extent ethnicity. This study aimed to gain in-depth insights into cultural and organisational factors contributing to this variation in uptake.Design This is the first ethnographic study of kidney centre culture to focus on home dialysis uptake. The NASSS (non-adoption, abandonment, scale-up, spread, and sustainability) framework was used to map factors that influence the use of home dialysis.Setting We conducted focused ethnographic fieldwork in four kidney centres in England, with average or high rates of home dialysis use, selected to represent geographic, ethnic and socioeconomic diversity.Participants Observations of patient consultations, team meetings, patient education and training sessions (n=34); and interviews with staff, patients and carers (n=72).Results We identified three themes that can support the decision to pursue home dialysis: (a) Encouraging patient voice and individualised support. Kidney care teams engaged with people’s psychosocial needs and cultural contexts, and valued peer support as part of patient education; (b) Ensuring access to home dialysis. Transparency about all treatment options, minimisation of eligibility assumptions and awareness of inequities of access; (c) Achieving sustained change based on benefits for patients. This included organisational cultures which adopted quality improvement approaches and worked with wider stakeholders to shape future policy and practice.Conclusions Willingness to pursue dialysis at home relied on patients’ and carers’ ability to place their confidence in their kidney care teams rather than how services were organised. Our study of kidney centre culture has identified approaches to patient empowerment, access to treatment and readiness for improvement and change that could be incorporated into a service delivery intervention.

Introduction Appropriate and healthy feeding practices can enhance a child’s health, prevent obesity and reduce chronic metabolic disease risks. Given the ethnic variations in feeding practices and metabolic risk, interventions must be community specific. Culturally tailored grassroots interventions targeting infant feeding can induce behavioural changes, mitigating chronic metabolic disease risks in later life.The aim of this study was to explore participant feedback and inform intervention delivery methods within marginalised communities.Methods A pilot three-arm cluster randomised controlled trial was conducted in the Tower Hamlets and Newham boroughs of London, involving community participatory learning and action groups. The study recruited 186 South Asian (Indian, Bangladeshi, Pakistani and Sri Lankan) mothers or carers of children aged 0–2 years. Participants in intervention arms were invited to either face to face or online intervention arms, facilitated by trained multilingual community facilitators (CFs), offering culturally informed discussions on child nutrition and care practices. The qualitative study was embedded within this trial, collecting feedback through interviews and focus groups. Thematic analysis was employed to identify key themes, focusing on intervention fidelity and acceptance.Results Of the initial attendees, 42 (from the remaining 153 at the study’s conclusion) and 9 CFs offered feedback on the intervention’s delivery and suggestions for enhancing community-based interventions’ success. Key findings highlighted the need for a more flexible approach to boost participation and the significance of providing accessible, translated documents and resources. Participants expressed a strong preference for a hybrid model of intervention delivery, combining face-to-face and online sessions to accommodate diverse needs.Conclusion Parenting interventions, particularly for new mothers, may engage more of the target population by adopting a hybrid design. This would provide attendees with the flexibility to select the delivery method, session timings and the option to participate at any stage of the intervention. The study underscores the importance of cultural tailoring and flexible delivery methods in enhancing participation and engagement in community-based health interventions.

ABSTRACT Background General practitioners (GPs) are key to the frontline assessment and treatment of young people after self‐harm. Young people value GP‐led self‐harm care, but little is known about how GPs manage young people after self‐harm. Aim This study aimed to understand the approaches of GPs to self‐harm in young people and explore their perspectives on ways they might help young people avoid repeat self‐harm. Methods We conducted semi‐structured interviews with GPs from the National Health Service in England in 2021. GPs were recruited from four geographically spread clinical research networks and a professional special interest group. Data were analysed using reflexive thematic analysis. The study's patient and public involvement and community of practice groups supported participant recruitment and data analysis. Results Fifteen interviews were undertaken with a mean age of participants being 41 years and a breadth of experience in practice ranging from 1 to 22 years. Four themes were generated: GPs' understanding of self‐harm; approaches to managing self‐harm; impact of COVID‐19 on consultations about self‐harm; and ways to avoid future self‐harm. Conclusion Negative attitudes towards self‐harm within clinical settings are well documented, but GPs said they took self‐harm seriously, listened to young people, sought specialist support when concerned and described appropriate ways to help young people avoid self‐harm. GPs felt that relationship‐based care is an important element of self‐harm care but feared remote consultations for self‐harm may impede on this. There is a need for brief GP‐led interventions to reduce repeat self‐harm in young people. Patient and Public Contribution A study advisory group consisting of young people aged 16–25 years with personal experience of self‐harm and parents and carers of young people who have self‐harmed designed the recruitment poster of this study, informed its topic guide and contributed to its findings.

Background: Opioids are frequently prescribed for persistent non-cancer pain despite limited evidence of long-term effectiveness and risk of harm. Evidence-based interventions to address inappropriate opioid prescribing are lacking. Aim: To explore perspectives of people living with persistent pain to understand barriers and facilitators in reducing opioids in the context of a pharmacist-led primary care review, and identify review components and features for optimal delivery. Design & setting: A multi-method qualitative study undertaken in the primary care setting in the UK. Method: Adults with experience of persistent pain and taking opioids participated in semi-structured interviews (n = 15, 73% female) and an online discussion forum (n = 31). The Theoretical Domains Framework (TDF) provided a framework for data collection and thematic analysis, involving deductive analysis to TDF domains, inductive analysis within domains to generate sub-themes, and sub-theme comparison to form across-domain overarching themes. The behaviour change technique taxonomy (v1) and motivational behaviour change technique classification system were used to systematically map themes to behaviour change techniques to identify potential review components and delivery features. Results: Thirty-two facilitator and barrier sub-themes for patients reducing opioids were identified across 13 TDF domains. These combined into the following six overarching themes: learning to live with pain; opioid reduction expectations; assuming a medical model; pharmacist-delivered reviews; pharmacist–patient relationship; and patient engagement. Sub-themes mapped to 21 unique behaviour change techniques, yielding 17 components and five delivery features for the proposed PROMPPT review. Conclusion: This study generated theoretically informed evidence for design of a practice pharmacist-led PROMPPT review. Future research will test the feasibility and acceptability of the PROMPPT review and pharmacist training.

Leishmaniasis is a tropical infectious disease affecting some of the world's most economically disadvantaged and resource-poor regions. Cutaneous leishmaniasis (CL) is the most common out of the three clinical types of Leishmaniasis. Since 1904 this disease has been endemic in Sri Lanka. CL is considered a disfiguring stigmatising disease with a higher psychosocial burden. However, there needs to be a more in-depth, holistic understanding of the psychosocial burden of this disease, both locally and internationally. An in-depth understanding of the disease burden beyond morbidity and mortality is required to provide people-centred care. We explored the psychosocial burden of CL in rural Sri Lanka using a complex multimethod qualitative approach with community engagement and involvement. Data collection included participant observation, an auto-ethnographic diary study by community researchers with post-diary interviews, and a Participant Experience Reflection Journal (PERJ) study with post-PERJ interviews with community members with CL. The thematic analysis revealed three major burden-related themes on perceptions and reflections on the disease: wound, treatment, and illness-experience related burden. Fear, disgust, body image concerns, and being subjected to negative societal reactions were wound-related. Treatment interfering with day-to-day life, pain, the time-consuming nature of the treatment, problems due to the ineffectiveness of the treatment, and the burden of attending a government hospital clinic were the treatment-related burdens. Anxiety/worry due to wrongly perceived disease severity and negative emotions due to the nature of the disease made the illness experience more burdensome. Addressing the multifaceted psychosocial burden is paramount to ensure healthcare seeking, treatment compliance, and disease control and prevention. We propose a people-centred healthcare model to understand the contextual nature of the disease and improve patient outcomes.

Abstract Background Self‐harm in young people is a serious concern but a deeper understanding of the functions of self‐harm in young people can tailor care and inform new clinical interventions to reduce repeat self‐harm and suicide risk. General practitioners (GPs), as frontline healthcare professionals, have an important role in managing self‐harm in young people. This study aimed to explore the functions of self‐harm in young people and their perspectives on future GP‐led care. Methods A qualitative study using interviews with young people aged between 16 and 25 years with a personal history of self‐harm was conducted. Interviews were transcribed and analysed using reflexive thematic analysis. Findings Four distinct functions were identified: (1) handling emotional states; (2) self‐punishment; (3) coping with mental illness and trauma; and (4) positive thoughts and protection. Young people valued GP‐led support and felt future GP interventions should include self‐help and be personalised. Conclusions These findings support clinicians, including GPs, to explore the functions of self‐harm in young people aged 16–25 in a personalised approach to self‐harm care. It should be noted that self‐harm may serve more than one function for a young person and thus interventions should recognise this. Patient and Public Contribution A group consisting of young people with lived experience of self‐harm, carers, the public, and those who work with young people who harm themselves conceived this study idea, informed recruitment methods and the interview topic guide, and supported the interpretation of findings.

Introduction Feeding practices developed in early life can impact a child’s nutrition, growth, dental health, cognitive development and lifetime risk of chronic diseases. Substantial evidence suggests ethnic health inequalities, and non-recommended complementary infant feeding practices among UK’s South Asian (SA) population. Nurture Early for Optimal Nutrition aims to use women’s group participatory learning and action (PLA) cycles to optimise infant feeding, care and dental hygiene practices in SA infants

Abstract Background Around 2 million people have migrated from Central and Eastern Europe to the UK since 2004. The UK Central and Eastern European Community (UK‐CEE) are disproportionately exposed to the social determinants of poor physical and mental health. Their health and healthcare beliefs remain under‐researched, particularly regarding primary care. Objective This review explores UK‐CEE community members' use and perceptions of UK general practice. Methods A systematic search of nine bibliographic databases identified 2094 publications that fulfilled the search criteria. Grey literature searches identified 16 additional relevant publications. Screening by title and abstract identified 201 publications of relevance, decreasing to 65 after full‐text screening. Publications were critically appraised, with data extracted and coded. Thematic analysis using constant comparison allowed generation of higher‐order thematic constructs. Results Full UK‐CEE national representation was achieved. Comparatively low levels of GP registration were described, with ability, desire and need to engage with GP services shaped by the interconnected nature of individual community members' cultural and sociodemographic factors. Difficulties overcoming access and in‐consultation barriers are common, with health expectations frequently unmet. Distrust and dissatisfaction with general practice often persist, promoting alternative health‐seeking approaches including transnational healthcare. Marginalized UK‐CEE community subgroups including Roma, trafficked and homeless individuals have particularly poor GP engagement and outcomes. Limited data on the impact of Brexit and COVID‐19 could be identified. Conclusions Review findings demonstrate the need for codesigned approaches to remove barriers to engagement, culturally adapt and develop trust in GP care for UK‐CEE individuals. Community Involvement Community members and stakeholders shaped the conceptualisation of the review question and validation of emergent themes.

Objectives In low/middle-income countries (LMICs), more than half of patients with first-episode psychosis initially seek treatment from traditional and religious healers as their first care. This contributes to an excessively long duration of untreated psychosis (DUP). There is a need for culturally appropriate interventions to involve traditional and spiritual healers to work collaboratively with primary care practitioners and psychiatrists through task-shifting for early detection, referral and treatment of first episode of psychosis.Methods To prevent the consequences of long DUP in adolescents in LMICs, we aim to develop and pilot test a culturally appropriate and context-bespoke intervention. Traditional HEalers working with primary care and mental Health for early interventiOn in Psychosis in young pErsons (THE HOPE) will be developed using ethnographic and qualitative methods with traditional healers and caregivers. We will conduct a randomised controlled cluster feasibility trial with a nested qualitative study to assess study recruitment and acceptability of the intervention. Ninety-three union councils in district Peshawar, Pakistan will be randomised and allocated using a 1:1 ratio to either intervention arm (THE HOPE) or enhanced treatment as usual and stratified by urban/rural setting. Data on feasibility outcomes will be collected at baseline and follow-up. Patients, carers, clinicians and policymakers will be interviewed to ascertain their views about the intervention. The decision to proceed to the phase III trial will be based on prespecified stop–go criteria.Ethics and dissemination Ethical approval has been obtained from Keele University Ethical Review Panel (ref: MH210177), Khyber Medical University Ethical Review Board (ref: DIR/KMU-EB/IG/001005) and National Bioethics Committee Pakistan (ref no. 4-87/NBC-840/22/621). The results of THE HOPE feasibility trial will be reported in peer-reviewed journals and academic conferences and disseminated to local stakeholders and policymakers.Trial registration number ISRCTN75347421.

Abstract Background More than one million people each year become infected by parasites that cause the disease cutaneous leishmaniasis (CL). This disease manifests as one or more skin lesions or ulcers that are slow to heal with variable response rates to drug treatments. Thus far, little attention has been paid to how the cultural effects of gender shape perceptions and experiences of CL. This review aims to bring together and analyse existing studies which use qualitative data to explore these differences. These studies offered insights into our specific research questions. Methods We conducted a systematic review of the literature pertaining to either CL or muco-cutaneous leishmaniasis (MCL) through EBSCO, EMBASE, Medline, Scopus and Web of Science databases. To meet inclusion criteria, articles had to be either qualitative or mixed-method with a qualitative component. They also had to include a reflection on how the gender of participants impacted the findings and addressed the lived experiences of CL. We did not exclude articles based on the language they were published in or in which country the study took place. Results From a total of 1589 potential articles, we found that thirteen met the inclusion criteria. These articles were published in English, Spanish or Portuguese and reported on studies carried out in various countries in Africa, Asia and South America. After using the principles of a meta-ethnography to analyse these studies, we generated several key themes. We found that health-seeking behaviours, treatment choices, stigma and the impact of scarring are shaped by gender in a variety of contexts. Conclusions Gender impacts on an individual’s experience of CL. In particular, women are more constricted in their health-seeking behaviours and experience more stigma both from the active lesions and from scarring than men. In many contexts, however, men are more at risk of becoming infected by the parasite that causes CL and may turn to more harmful or aggressive self-treatments. We recommend that future research on CL should consider the impact of gender as this can create very different experiences for individuals.

BackgroundKnowledge of early clinical manifestations, people's perceptions and behaviours is crucial in preventing and controlling neglected tropical diseases (NTDs). Cutaneous leishmaniasis is an NTD that causes skin lesions and affects millions worldwide. Delayed healthcare-seeking behaviour leading to prolonged treatment periods and complications is rife among people with cutaneous leishmaniasis. This study examined the patient-reported early clinical manifestations of cutaneous leishmaniasis, local interpretations and associated health behaviours within the socio-cultural context of rural Sri Lanka.Methodology/principal findingsWe conducted a qualitative study among people with cutaneous leishmaniasis in three rural communities in the Anuradhapura district, Sri Lanka. Participants' experiences were explored through a study-bespoke participant experience reflection journal and in-depth interviews. We analysed the data using a narrative-thematic approach. The study included 30 people with cutaneous leishmaniasis (12 females and 18 males) aged between 18 and 75 years. We identified four major themes during the analysis: 1) patient-reported early clinical manifestations of cutaneous leishmaniasis, 2) local interpretations of the early skin lesion(s), 3) associated actions and behaviours, and 4) the time gap between the initial notice of symptoms and seeking healthcare for cutaneous leishmaniasis. Early clinical manifestations differed among the participants, while the majority misinterpreted them as a mosquito/ant bite, pimple, wart, eczema, macule, or worm infestation. Participants undertook different context-specific self-management actions to cure cutaneous leishmaniasis. We identified an average time gap between the notice of symptoms and the first visit to the healthcare facility ranging from three to twelve months.Conclusions/significanceDiverse early clinical manifestations, local interpretations, and associated behaviours of people with cutaneous leishmaniasis have led to a substantial delay in healthcare-seeking. The study sheds light on the importance of understanding the manifestations of NTDs within the social context. Our findings will inform designing context-specific health interventions to improve awareness and healthcare-seeking in cutaneous leishmaniasis in rural settings.

Objective: To describe and synthesise the content of public-facing websites regarding the use of diagnostic imaging for adults with lower back pain, knee, and shoulder pain. Methods: Scoping review conducted in accordance with PRISMA guidance. A Google search was performed to identify public-facing websites that were either United Kingdom-based, or National Health Service affiliated. The DISCERN tool was used to appraise website quality before information regarding the use of imaging was synthesised using thematic analysis. Results: Eighty-six websites were included, with 48 making reference to the use of imaging. The information within the majority (n = 43) of public-facing websites aligns with best available evidence. Where there is inconsistency, this may be explained by lower website quality. Three themes were apparent regarding the use of imaging – imaging to inform diagnosis and management; imaging in context; patient experience and expectations. Conclusion: The recommendations and rationale for use of imaging contained within public-facing websites does not appear to justify the increase in imaging rates for musculoskeletal pain in the UK. Innovation: Publicly available information following a novel search strategy, is largely aligned with best evidence, further understanding is required to determine reasons for requesting imaging from a patient and clinician perspective.

Leishmaniasis is widely considered a disease that emerged in Sri Lanka in the 1990s. However, a comprehensive case report from 1904 suggests that the presence of Leishmaniasis was well demonstrated in Sri Lanka long before that. The Annual Administration Reports of Ceylon/Sri Lanka from 1895 to 1970 and the Ceylon Blue Book from 1821 to 1937 are official historical documents that provide an annual performance, progress, goals achieved, and finances of Sri Lanka during that time. Both these documents are available in the National Archives. The Ceylon Administrative Report of 1904 reports a full record of observation of Leishman-Donovan bodies in Sri Lanka for the first time. These reports contain a total of 33,438 cases of leishmaniasis in the years 1928 to 1938, 1953, 1956, 1957, 1959, 1960, and 1961 to 1962. Up to 1938, the term “cutaneous leishmaniasis” was used, and after 1938, the term “leishmaniasis” was used in these reports. “Kala-azar” was also mentioned in 11 administrative reports between 1900 and 1947. In 1947, an extensive vector study has been carried out where they reported kala-azar cases. This well-documented government health information clearly shows that the history of leishmaniasis is almost the same as the global history in which the first case with Leishman-Donovan bodies were reported in 1903.

Introduction Use of home dialysis by centres in the UK varies considerably and is decreasing despite attempts to encourage greater use. Knowing what drives this unwarranted variation requires in-depth understanding of centre cultural and organisational factors and how these relate to quantifiable centre performance, accounting for competing treatment options. This knowledge will be used to identify components of a practical and feasible intervention bundle ensuring this is realistic and cost-effective.Methods and analysis Underpinned by the non-adoption, abandonment, scale-up, spread and sustainability framework, our research will use an exploratory sequential mixed-methods approach. Insights from multisited focused team ethnographic and qualitative research at four case study sites will inform development of a national survey of 52 centres. Survey results, linked to patient-level data from the UK Renal Registry, will populate a causal graph describing patient and centre-level factors, leading to uptake of home dialysis and multistate models incorporating patient-level treatment modality history and mortality. This will inform a contemporary economic evaluation of modality cost-effectiveness that will quantify how modification of factors facilitating home dialysis, identified from the ethnography and survey, might yield the greatest improvements in costs, quality of life and numbers on home therapies. Selected from these factors, using the capability, opportunity and motivation for behaviour change framework (COM-B) for intervention design, the optimal intervention bundle will be developed through workshops with patients and healthcare professionals to ensure acceptability and feasibility. Patient and public engagement and involvement is embedded throughout the project.Ethics and dissemination Ethics approval has been granted by the Health Research Authority reference 20-WA-0249. The intervention bundle will comprise components for all stake holder groups: commissioners, provider units, recipients of dialysis, their caregivers and families. To reache all these groups, a variety of knowledge exchange methods will be used: short guides, infographics, case studies, National Institute for Health and Care Excellence guidelines, patient conferences, ‘Getting it Right First Time’ initiative, Clinical Reference Group (dialysis).

Summary: Self-harm in young people is a serious international health concern that impacts on those providing informal support: the supporting individuals of young people. We aimed to highlight the experiences, views, and needs of these supporting individuals of young people. We conducted a systematic review and thematic synthesis: PROSPERO CRD42020168527. MEDLINE, PsycINFO, EMBASE, AMED, CINAHL, ASSIA, and Web of Science were searched from inception to 6 May 2020 with citation tracking of eligible studies done on 1 Oct 2021. Primary outcomes were experiences, perspectives, and needs of parents, carers, or other family members of young people aged 12–25. Searches found 6167 citations, of which 22 papers were included in synthesis. Supporting individuals seek an explanation for and were personally affected by self-harm in young people. It is important that these individuals are themselves supported, especially as they negotiate new identities when handling self-harm in young people, as they attempt to offer support. The GRADE-CERQual confidence in findings is moderate. Recommendations informed by the synthesis findings are made for the future development of interventions. Clinicians and health service providers who manage self-harm in young people should incorporate these identified unmet needs of supporting individuals in a holistic approach to self-harm care. Future research must co-produce and evaluate interventions for supporting individuals. Funding: FM was supported by a NIHR School for Primary Care Research GP Career Progression Fellowship (SCPR-157 2020–20) to undertake this review and is now funded by a NIHR Doctoral Fellowship (NIHR300957). CCG is part-funded by the NIHR Applied Research Collaboration West Midlands.

Background: Acute flares in people with osteoarthritis (OA) are poorly understood. There is uncertainty around the nature of flares, their impact, and how these are managed. Aim: To explore understandings and experiences of flares in people with knee OA, and to describe self-management and help-seeking strategies. Design & setting: Qualitative interview study of people with knee OA in England. Method: Semi-structured interviews were undertaken with 15 people with knee OA. Thematic analysis was applied using constant comparison methods. Results: The following four main themes were identified: experiencing pain; consequences of acute pain; predicting and avoiding acute pain; and response to acute pain. People with OA described minor episodes that were frequent, fleeting, occurred during everyday activity, had minimal impact, and were generally predictable. This contrasted with severe episodes that were infrequent, had greater impact, and were less likely to be predictable. The latter generally led to feelings of low confidence, vulnerability, and of being a burden. The term ‘flare’ was often used to describe the severe events but this was applied inconsistently and some would describe a flare as any increase in pain. Participants used numerous self-management strategies but tended to seek help when these had been exhausted, their symptoms led to emotional distress, disturbed sleep, or pain experience worse than usual. Previous experiences shaped whether people sought help and who they sought help from. Conclusion: Severe episodes of pain are likely to be synonymous with flares. Developing a common language about flares will allow a shared understanding of these events, early identification, and appropriate management.

Objectives The aim of this study was to explore the agency of older adults and their strategies to restructure ways of being and belonging in a rapidly and radically changed social environment during the UK’s first COVID-19 lockdown in Spring 2020.Design Qualitative study consisting of semi-structured interviews. Findings were derived from a thematic analysis of interview transcripts. We also established a patient and public involvement and engagement group who advised on study design, interview topic guide and interpretation of findings.Setting Interviews were conducted online with older adults in the UK through their platform of choice in Spring 2020 in England, UK.Participants We conducted 28 interviews (16 women, 12 men) with older adults over the age of 70 years. Our participants were mostly white, middle class adults.Results From the data, we constructed three strategies that older adults used to employ agency and create spaces of belonging in their social networks despite lockdown restrictions. First, participants created a sense of belonging by being ‘good’ members of society who were knowledgeable about COVID-19. Second, older adults created new ways to socially engage with the wider community. Finally, older adults actively restructured social networks to preserve a sense of belonging.Conclusions Older adults are actively and creatively carving a space of belonging during the societal upheaval in response to the COVID-19 lockdown and public health restrictions. Rather than internalising potential exclusionary messages based on their age, older adults instead used their agency to reimagine and transform spheres of belonging.

Background: Self-harm in young people is a growing public health concern. Young people commonly present to their GP for help with self-harm, and thus general practice may be a key setting to support young people who have self-harmed. Aim: To examine the potential of general practice to support young people aged 10–25 years who have harmed themselves. Design & setting: A narrative review of published and grey literature. Method: The Scale for the Assessment of Narrative Review Articles (SANRA) was used to guide a narrative review to examine the potential of general practice to support young people who have self-harmed. The evidence is presented textually. Results: The included evidence showed that GPs have a key role in supporting young people, and they sometimes relied on gut feeling when handling uncertainty on how to help young people who had self-harmed. Young people described the importance of initial clinician responses after disclosing self-harm, and if they were perceived to be negative, the self-harm could become worse. Conclusion: In context of the evidence included, this review found that general practice is a key setting for the identification and management of self-harm in young people; but improvements are needed to enhance general practice care for young people to fulfil its potential.

Cutaneous leishmaniasis (CL) is a parasitic skin disease endemic in at least 88 countries where it presents an urgent, albeit often “neglected” public health problem. In this paper, we discuss our model of decolonial community engagement in the ECLIPSE global health research program, which aims to improve physical and mental health outcomes for people with CL. The ECLIPSE program has four interlinked phases and underpinning each of these phases is sustained and robust community engagement and involvement that guides and informs all activities in ECLIPSE. Our decolonial approach implies that the model for community engagement will be different in Brazil, Ethiopia and Sri Lanka. Indeed, we adopt a critical anthropological approach to engaging with community members and it is precisely this approach we evaluate in this paper. The data and material we draw on were collected through qualitative research methods during community engagement activities. We established 13 Community Advisory Groups (CAGs): in Brazil (n = 4), Ethiopia (n = 6), and Sri Lanka (n = 3). We identified four overarching themes during a thematic analysis of the data set: (1) Establishing community advisory groups, (2) CAG membership and community representation, (3) Culturally appropriate and context-bespoke engagement, and (4) Relationships between researchers and community members. During our first period of ECLIPSE community engagement, we have debunked myths (for instance about communities being “disempowered”), critiqued our own practices (changing approaches in bringing together CAG members) and celebrated successes (notably fruitful online engagement during a challenging COVID-19 pandemic context). Our evaluation revealed a gap between the exemplary community engagement frameworks available in the literature and the messy, everyday reality of working in communities. In the ECLIPSE program, we have translated ideal(istic) principles espoused by such community engagement guidance into the practical realities of “doing engagement” in low-resourced communities. Our community engagement was underpinned by such ideal principles, but adapted to local sociocultural contexts, working within certain funding and regulatory constraints imposed on researchers. We conclude with a set of lessons learned and recommendations for the conduct of decolonial community engagement in global health research.

Community and public engagement (CPE) is increasingly becoming a key component in global health research. The National Institute for Health Research (NIHR) is one of the leading funders in the UK of global health research and requires a robust CPE element in the research it funds, along with CPE monitoring and evaluation. But what does “good” CPE look like? And what factors facilitate or inhibit good CPE? Addressing these questions would help ensure clarity of expectations of award holders, and inform effective monitoring frameworks and the development of guidance. The work reported upon here builds on existing guidance and is a first step in trying to identify the key components of what “good” CPE looks like, which can be used for all approaches to global health research and in a range of different settings and contexts. This article draws on data collected as part of an evaluation of CPE by 53 NIHR-funded award holders to provide insights on CPE practice in global health research. This data was then debated, developed and refined by a group of researchers, CPE specialists and public contributors to explore what “good” CPE looks like, and the barriers and facilitators to good CPE. A key finding was the importance, for some research, of investing in and developing long term relationships with communities, perhaps beyond the life cycle of a project; this was regarded as crucial to the development of trust, addressing power differentials and ensuring the legacy of the research was of benefit to the community.

ObjectiveTo explore the perceptions and experiences of schizophrenia from patients, their care givers, health care providers, spiritual and traditional healers to develop a community-based intervention for improving treatment adherence for people with schizophrenia in Pakistan.MethodsThis qualitative study involved four focus group discussions (FGD) with a total of 26 participants: patients and carers (n = 5), primary care staff (n = 7), medical technicians (n = 8) and traditional and spiritual healers (n = 6). The participants were selected using purposive sampling method. FGDs were audio-recorded and transcribed. A thematic analysis was applied to the data set.ResultsThe themes identified were (i) Schizophrenia is not merely a biomedical problem: participants believed that poverty and an inferiority complex resulting from social disparity caused schizophrenia and contributed to non-adherence to medications; (ii) Spiritual healing goes hand in hand with the medical treatment: participants regarded spiritual and traditional treatment methods as an inherent part of schizophrenia patients' well-being and rehabilitation; (iii) Services for mental illness: mental health is not covered under primary health in a basic health unit: participants believed that the lack of services, training and necessary medication in primary care are major issues for treating schizophrenia in community; (iv) Barriers to community-based interventions: primary care staff believed that multiple pressures on staff, lack of incentives, non-availability of medication and lack of formal referral pathways resulted in disintegration of dealing with schizophrenia patients in primary care facilities.ConclusionThe study has identified a number of barriers and facilitators to developing and delivering a psychosocial intervention to support people living with schizophrenia in Pakistan. In particular, the importance of involving spiritual and traditional healers was highlighted by our diverse group of stakeholders.

COVID-19 has significantly impacted young people’s lives yet little is known about the COVID-19 related sources of information they access. We performed a cross-sectional survey of pupils (11–16 years) in North Staffordshire, UK. 408 (23%) pupils responded to an online survey emailed to them by their school. Descriptive statistics were used to summarise the data. Social media, accessed by 68%, played a significant role in the provision of information, despite it not being considered trustworthy. 89% felt that COVID-19 had negatively affected their education. Gaps in the provision of information on COVID-19 have been identified.

Abstract Background The contribution of involving patients and public in health research is widely reported, particularly within mental health research. Less is written about such contributions to doctoral research. The research focus of this doctoral research, self‐harm in older adults, was put forward by a Patient Public Involvement Engagement (PPIE) group, who contributed to its development. Aims Critically reflect on the process, potential impact and identify challenges and opportunities in involving robust PPIE in a doctoral study. Methods Three PPIE members contributed to a systematic review (SR) and a qualitative study through a series of four workshops to meet the aims of the study. PPIE contributed to developing the SR review questions, protocol, data analysis and dissemination of findings. For the qualitative study, they helped develop research questions, protocol, public‐facing documentation, recruitment strategies and data analysis. Involvement followed the GRIPP2‐SF reporting checklist. Results PPIE enhanced methodological rigour, data analysis, interpretation and dissemination of findings. Challenges included lack of ethical guidance, time‐related pressures and ensuring support for PPIE members. These were successfully managed through ongoing dialogue and regular communication. Conclusions PPIE can enhance the quality and depth of doctoral research, as lived experiences shared by PPIE members add to research's components. Exposing early‐career researchers to PPIE can build research cultures sensitive to PPIE's potential contribution and develop the expertise needed to avoid tokenistic involvement. Capturing lay perspectives is essential in mental health research to ensure research findings are accessible and that findings inform clinical practice. However, clear guidance on the ethical dimensions to PPIE is needed.

Background: Self-harm is the leading risk factor for suicide, with elevated rates reported amongst older populations. This study explores how older adults experience self-harm, identifying factors leading to self-harm. Methods: Semi-structured interviews with older adults (≥60 years) engaging in self-harm and support workers from third sector services in England. Older adults were invited to participate in a follow-up interview. Interviews were recorded, transcribed verbatim and data analysed thematically. Ethical approval obtained from Keele University's Ethics Review Panel. A Patient Involvement group contributed to study design, data analysis and interpretation. Outcomes: Between September 2017 to September 2018, 24 interviews were conducted involving 16 participants: nine older adults and seven support workers. Eight older adults consented to follow-up interviews. All older adults reported diagnoses of mental illness in addition to physical illness. Participants identified diverse stressors accumulating over the life-course leaving older adults particularly vulnerable to self-harm. Such stressors included adverse events, loss, interpersonal and health problems. A sense of shame and stigma amongst older people using self-harm to manage distress was also reported. Interpretation: Self-harm is often concealed due to stigma and shame, being further accentuated amongst older adults, which may result in low levels of medical help-seeking behaviour for self-harm. Self-harm occurred along a spectrum of no-suicidal intent to high-levels of intent, suggesting self-harm holds different functions to older adults. Clinicians should be aware of the existence of self-harm in this age-group, and the heightened risk amongst those with comorbidities so adequate assessment, support and/or referral is provided. Keywords: Self-harm, Qualitative, Suicide, Older adults

Abstract Background Shoulder pain is a highly prevalent complaint and disorders of the rotator cuff, including tears, are thought to be the most common cause. The number of operations to repair the torn rotator cuff has risen significantly in recent years. While surgical techniques have progressed, becoming less invasive and more secure, rehabilitation programmes have remained largely like those initially developed when surgical techniques were less advanced and more invasive. Uncertainty remains in relation to the length of post-surgical immobilisation and the amount of early load permitted at the repair site. In the context of this uncertainty, current practice is to follow a generally cautious approach, including long periods of immobilisation in a sling and avoidance of early active rehabilitation. Systematic review evidence suggests early mobilisation might be beneficial but further high-quality studies are required to evaluate this. Methods/design RaCeR is a two-arm, multi-centre pilot and feasibility randomised controlled trial with nested qualitative interviews. A total of 76 patients with non-traumatic rotator cuff tears who are scheduled to have a surgical repair will be recruited from up to five UK NHS hospitals and randomly allocated to either early patient-directed rehabilitation or standard rehabilitation that incorporates sling immobilisation. RaCeR will assess the feasibility of a future, substantive, multi-centre randomised controlled trial to test the hypothesis that, compared to standard rehabilitation incorporating sling immobilisation, early patient-directed rehabilitation is both more clinically effective and more cost-effective. In addition, a sample of patients and clinicians will be interviewed to understand the acceptability of the interventions and the barriers and enablers to adherence to the interventions. Discussion Research to date suggests that there is the possibility of reducing the patient burden associated with post-operative immobilisation following surgery to repair the torn rotator cuff and improve clinical outcomes. There is a clear need for a high-quality, adequately powered, randomised trial to better inform clinical practice. Prior to a large-scale trial, we first need to undertake a pilot and feasibility trial to address current uncertainties about recruitment, retention and barriers to adherence to the interventions, particularly in relation to whether patients will be willing to begin moving their arm early after their operation. Trial registration ISRCTN Registry, 18357968. Registered on 10 August 2018.

We reviewed the evidence on community-based interventions for the prevention and control of cutaneous leishmaniasis (CL). Community initiatives tailored towards awareness and mobilisation are regarded as a priority area in the Neglected Tropical Disease Roadmap 2021–2030 by the World Health Organization. We searched nine electronic databases for intervention-based studies. Two independent reviewers screened and assessed the articles for methodological quality using predefined criteria. We conducted a meta-analysis using a random effects model, along with narrative synthesis. Thirteen articles were eligible for inclusion, of which 12 were quantitative studies (quasi-experimental with control group and pre-post interventions) and one qualitative study. All articles reported on health education interventions aimed at changing people’s knowledge, attitudes, and practices (KAP) in relation to CL. Participant groups included students, mothers, housewives, volunteer health workers, and residents in general. An increased score was recorded for all outcomes across all interventions: knowledge (SMD: 1.85, 95% CI: 1.23, 2.47), attitudes (SMD: 1.36, 95% CI: 0.56, 2.15), and practices (SMD: 1.73, 95% CI: 0.99, 2.47). Whilst our findings show that educational interventions improved people’s knowledge, attitudes, and practices about CL, we argue that this approach is not sufficient for the prevention and control of this disease. Knowledge does not always translate into action, particularly where other structural barriers exist. Therefore, we recommend the design of more innovative community-based interventions with a broader focus (e.g., stigma, financial barriers, and healthcare access).

A disease is considered neglected when it is not given due priority in health policies despite the social relevance of that disease, either in terms of the number of individuals affected by it or its morbidity or mortality. Although the causes are structural, neglect in health does not occur in a vacuum. In this paper, we explore how sickle cell disease (SCD) is constructed and neglected in Brazil, based on insights from our long-term participatory qualitative research in the state of Bahia. We present five overarching themes relevant to the social production of SCD, and associated health policies in Brazil: (1) The achievements and setbacks to overcome neglect in SCD, (2) Continuity of comprehensive SCD care; (3) Social movements of people with SCD; (4) Biocultural citizenship; and (5) Academic advocacy. We conclude that it is insufficient to merely recognize the health inequities that differentiate white and black populations in Brazil; racism must be understood as both a producer and a reproducer of this process of neglect. We conclude with a set of recommendations for the main SCD stakeholder groups committed to improving the lives of people living with SCD.

Having an effective surveillance system is imperative to take timely and appropriate actions for disease control and prevention. In Sri Lanka, leishmaniasis was declared as a notifiable disease in 2008. This paper presents a comprehensive compilation of the up-to-date documents on the communicable disease and leishmaniasis surveillance in Sri Lanka in order to describe the importance of the existing leishmaniasis surveillance system and to identify gaps that need to be addressed. The documents perused included circulars, reports, manuals, guidelines, ordinances, presentations, and published articles. The disease trends reported were linked to important landmarks in leishmaniasis surveillance. The findings suggest that there is a well-established surveillance system in Sri Lanka having a massive impact on increased case detection, resulting in im-proved attention on leishmaniasis. However, the system is not without its short comings and there is room for further improvements.

Key concepts and theories that are taught in order to develop cultural competency skills are often introduced to medical students throughout behavioral and social science (BSS) learning content. BSS represents a core component of medical education in the United Kingdom. In this paper, we examine, through (auto)ethnographic data and reflections, the experiences of BSS in medical education. The empirical data and insights have been collected in two ways: (1) through long-term ethnographic fieldwork among medical students and (2) via autoethnographic reflexive practice undertaken by the co-authors who studied, worked, examined, and collaborated with colleagues at different UK medical schools. Our findings indicate that despite BSS constituting a mandatory, essential component of the medical curriculum, medical students did not always perceive BSS as useful for their future practice as doctors, nor did they find it to be clinically relevant, in comparison to the biomedical learning content. We suggest that it is paramount for all stakeholders to commit to cultivating and developing cultural competency skills in medical education, through robustly embedding BSS learning content across the undergraduate medical curriculum. We conclude with recommendations for a wide range of educational practices that would ensure a full integration of BSS in the medical curriculum.

Cluster headache (CH), a severe primary headache, is often misdiagnosed and mismanaged. The aim of this study was to develop and evaluate a screening tool to aid the diagnosis of CH. We developed a novel 12-item screening tool. This was comprised of four components: (1) images depicting headache pain; (2) pain descriptors; (3) key questions that could differentiate between CH and migraine; and (4) a visual analogue pain scale. The total possible questionnaire score ranged from 3-32. Patients with CH and migraines (control group) were recruited prospectively from a headache centre in the North of England, UK. Two-hundred and ninety-six patients were included in the study: 81 CH patients, 36 of which suffer with episodic CH and 45 with chronic CH; 215 migraine patients, 92 of which suffer with episodic migraine and 123 with chronic migraine. The mean questionnaire score was higher in CH patients versus migraine patients (28.4 versus 19.5). At a cut-off score of >25 out of 32, the screening tool had a sensitivity of 86.4% and a specificity of 92.0% in differentiating between CH and migraine. The screening tool could be a useful instrument to aid the diagnosis of a CH. The images depicting headache pain do not clearly discriminate between CH and migraine.