Community-based strategies to increase coverage of intermittent preventive treatment of malaria in pregnancy with sulfadoxine-pyrimethamine in sub-Saharan Africa: a systematic review, meta-analysis, meta-ethnography, and economic assessment.

BACKGROUND: Community-based approaches might increase uptake of intermittent preventive treatment of malaria in pregnancy with sulfadoxine-pyrimethamine (IPTp-SP). We assessed the effects of community-based approaches on IPTp-SP and antenatal care coverage, and barriers and facilitators to implementation in sub-Saharan Africa. METHODS: We did a systematic review, meta-analysis, meta-ethnography, and economic assessment. We searched the WHO International Clinical Trials Registry Platform, PubMed, the Malaria in Pregnancy Library database, Medline, Global Health and Global Health Archives, and the Cochrane Library for trials, mixed-methods, qualitative, and cost-effectiveness studies of community health worker promotion of antenatal care, IPTp-SP delivery, or both, with no language restrictions, published before March 21, 2024. Information on interventions, number of IPTp-SP doses, antenatal care visits, and barriers and facilitators were extracted. We did a meta-analysis (random effects) comparing effects on two or more or three or more IPTp-SP doses and one or more or four or more antenatal care visits. We followed Noblit and Hare's method of meta-ethnography to synthesise qualitative findings, using reciprocal translation and line-of-argument synthesis. We developed a theory for increased community IPTp-SP uptake. We also summarised cost and cost-effectiveness studies. This study is registered with PROSPERO, CRD42022364114. FINDINGS: Of 4753 records screened, we included 23 (0·5%) reporting on 15 studies. Community health worker involvement was associated with an increase in two or more IPTp-SP doses (pooled risk ratio 1·48, [95% CI 1·24-1·75]; 12 sub-studies; I2 94·7%) and three or more IPTp-SP doses (1·73 [1·19-2·50]; ten sub-studies, I2 97·5%), with no decrease in four or more antenatal care visits (1·17 [1·00-1·36]; 13 sub-studies; I2 90·3%). Cluster-randomised controlled trials showed a lower increase in coverage of three or more IPTp-SP doses (1·08 [1·00-1·16]; I2 0·0%; six studies) compared with before-and-after studies (2·86 [1·29-6·33]; I2 98·9%; four studies; subgroup analysis p=0·019). Barriers to community health worker delivery of IPTp-SP included women's fear of side-effects, lack of knowledge, lack of trust in community health workers, and sociocultural factors. Community sensitisation, engagement of husbands, pre-established community health worker networks, and trained and supported community health workers facilitated IPTp-SP delivery by community health workers. Incremental cost-effectiveness ratios ranged from $1·1 to $543 per disability-adjusted life-year averted. INTERPRETATION: Community-based approaches increased IPTp-SP coverage and might have a positive effect on the number of antenatal care visits in addition to being cost-effective, although we found high heterogeneity among studies. Community sensitisation and engagement in addition to established, trained, and supported community health workers can facilitate acceptability, delivery, and uptake of IPTp-SP delivered by community health workers. FUNDING: EDCTP-2 supported by the European Union. TRANSLATION: For the French translation of the abstract see Supplementary Materials section.

Institutional ethnography: A methodology for exploring complex problems in healthcare systems.

Healthcare professionals experiencing barriers in the delivery of care are often unaware of factors within complex institutions that create and perpetuate those problems. Institutional ethnography in healthcare is a research methodology that starts from the perspective of a problem that clinicians or people receiving care experience and seeks to identify how those negative experiences are coordinated by institutional structures. This paper describes and advocates for the use of institutional ethnography as a powerful tool to investigate problems experienced by individuals or groups in the complex systems of healthcare design and delivery. It is a research methodology that has been adopted across settings in North America, although it has the potential to be utilized more broadly across other settings by clinicians and researchers. This echoes calls from other authors for its use across a wider range of healthcare disciplines and settings. Institutional ethnography is an underutilized research methodology that has potential to address a wide range of challenges experienced in contemporary healthcare. It offers healthcare clinicians the opportunity to better understand and resolve issues affecting their practice within complex healthcare systems.

Shape-shifting versions of class in Australia and the pursuit of equity in public health.

The COVID-19 pandemic and current cost of living crisis have highlighted socioeconomically patterned health disparities, bringing renewed focus on equity in public health. Despite political rhetoric invoking cultural narratives of egalitarianism and opportunities for class mobility, social class remains a significant factor in health outcomes in the Australian context. For social scientists, class (despite robust critiques) is a key analytical concept that has been theoretically broadened to encompass social and cultural practices (habitus). In public health, however, concepts of social disadvantage have expanded toward frames such as health equity and socioeconomic status in ways that can obscure 'class' and habitus. Understandings and operationalization of concepts of class and equity not only impact collaborative and interdisciplinary relationships, but also the framing of public health problems and health promotion interventions and policies. In this article, we draw on our experiences as anthropologists conducting ethnography in and of Australian health promotion programs to map and re-evaluate the intersection of concepts of social class and equity. We trace how representations of class emerged in these programs, and the versions of class and equity that materialized across different public health contexts. We argue for a conceptual repositioning of class that recognizes its shape-shifting qualities and of its materializations in different politics, disciplines and everyday contexts. In doing so, we highlight 'class' as a salient dimension of the design, implementation and evaluation of health promotion programs.

VIVALDI ASCOT and Ethnography Study: protocol for a mixed-methods longitudinal study to evaluate the impact of COVID-19 and other respiratory infection outbreaks on care home residents' quality of life and psychosocial well-being.

INTRODUCTION: Older adults in care homes experienced some of the highest rates of mortality from SARS-CoV-2 globally and were subjected to strict and lengthy non-pharmaceutical interventions, which severely impacted their daily lives. The VIVALDI ASCOT and Ethnography Study aims to assess the impact of respiratory outbreaks on care home residents' quality of life, psychological well-being, loneliness, functional ability and use of space. This study is linked to the VIVALDI-CT, a randomised controlled trial of staff's asymptomatic testing and sickness payment support in care homes (ISRCTN13296529). METHODS AND ANALYSIS: This is a mixed-methods, longitudinal study of care home residents (65+) in Southeast England. Group 1-exposed includes residents from care homes with a recent COVID-19 or other respiratory infection outbreak. Group 2-non-exposed includes residents from care homes without a recent outbreak. The study has two components: (a) a mixed-methods longitudinal face-to-face interviews with 100 residents (n=50 from group 1 and n=50 from group 2) to assess the impact of outbreaks on residents' quality of life, psychological well-being, loneliness, functional ability and use of space at time 1 (study baseline) and time 2 (at 3-4 weeks after the first visit); (b) ethnographic observations in communal spaces of up to 10 care homes to understand how outbreaks and related restrictions to the use of space and social activities impact residents' well-being. The study will interview only care home residents who have the mental capacity to consent. Data will be compared and integrated to gain a more comprehensive understanding of the impact of outbreaks on residents' quality of life and well-being. ETHICS AND DISSEMINATION: The VIVALDI ASCOT and Ethnography Study obtained ethical approval from the Health Research Authority (HRA) Social Care REC (24/IEC08/0001). Only residents with the capacity to consent will be included in the study. Findings will be published in scientific journals.

Community-engaged Research Partnerships as Healing Spaces for Health Professionals and Researchers.

Drawing from collective experiences in our capacity building project: Health Equity Activation Research Team for Inclusion Health, we argue that while community-engaged partnerships tend to focus on understanding health inequities and developing solutions, they can be healing spaces for health professionals and researchers. Data were obtained from a 15-month participatory ethnography, including focus groups and interviews. Ethnographic notes and transcripts were coded and analyzed using both deductive and inductive coding. Practices of radical welcome, vulnerability, valuing the whole person, acknowledging how partnerships can cause harm, and centering lived experience expertise in knowledge creation processes were identified as key characteristics of healing spaces. Ultimately, health professionals and researchers work within the same social, political and economic contexts of populations with the worst health outcomes. Their own healing is critical for tackling larger systemic changes aimed at improving the well-being of communities harmed by legacies of exclusion.

Discharging older patients from hospital to homecare: conflicts in collaborative practices among nurses across sectors.

BACKGROUND: Collaboration is a key factor influencing the quality and safety in patients transition between sectors. However, specific collaborative practices may give rise to conflict between hospital nurses and community nurses. AIMS: To gain a deeper understanding of collaborative practices which have the potential to fuel tension in collaboration between hospital nurses and community nurses during discharge of older patients from hospital to homecare. METHODS: A meta-ethnography approach was used in this study and a systematic literature search was conducted in 2022. RESULTS: Five themes were identified in the analysis. These themes revealed how uncertainty, limited confidence in information and personal attitude in communication may fuel tension between hospital nurses and community nurses. Tensions arising from a negative loop emerged because of uncertainty, causing a growing rift between hospital nurses and community nurses, leaving them as opponents rather than collaborators. The authors suggest that policy makers and managers can break this loop by underpinning shared policies and awareness of common objectives.

A meta-ethnography of the factors that shape link workers' experiences of social prescribing.

BACKGROUND: Social prescribing is gaining traction internationally. It is an approach which seeks to address non-medical and health-related social needs through taking a holistic person-centred and community-based approach. This involves connecting people with and supporting them to access groups and organisations within their local communities. It is hoped that social prescribing might improve health inequities and reduce reliance on healthcare services. In the UK, social prescribing link workers have become core parts of primary care teams. Despite growing literature on the implementation of social prescribing, to date there has been no synthesis that develops a theoretical understanding of the factors that shape link workers' experiences of their role. METHODS: We undertook a meta-ethnographic evidence synthesis of qualitative literature to develop a novel conceptual framework that explains how link workers experience their roles. We identified studies using a systematic search of key databases, Google alerts, and through scanning reference lists of included studies. We followed the eMERGe guidance when conducting and reporting this meta-ethnography. RESULTS: Our synthesis included 21 studies and developed a "line of argument" or overarching conceptual framework which highlighted inherent and interacting tensions present at each of the levels that social prescribing operates. These tensions may arise from a mismatch between the policy logic of social prescribing and the material and structural reality, shaped by social, political, and economic forces, into which it is being implemented. CONCLUSIONS: The tensions highlighted in our review shape link workers' experiences of their role. They may call into question the sustainability of social prescribing and the link worker role as currently implemented, as well as their ability to deliver desired outcomes such as reducing health inequities or healthcare service utilisation. Greater consideration should be given to how the link worker role is defined, deployed, and trained. Furthermore, thought should be given to ensuring that the infrastructure into which social prescribing is being implemented is sufficient to meet needs. Should social prescribing seek to improve outcomes for those experiencing social and economic disadvantage, it may be necessary for social prescribing models to allow for more intensive and longer-term modes of support.

Registered general nurses' health assessment practices in a tertiary hospital: A focused ethnography study.

AIM: To explore the assumptions and values that influence nursing health assessment practices among registered general nurses in general medical and surgical wards. DESIGN: The study was designed as a focused ethnography. METHODS: A semi-structured interview guide was used to explore prevailing nursing health assessment practices of 13 registered general nurses in an attempt to explore the assumptions and values influencing health assessment practices in the study setting. Data were analysed inductively using an interpretive qualitative content analysis method. RESULTS: Nursing health assessment practices, and underlying assumptions and values were underpinned by a central theme of a culture of low expectation relating to nursing health assessment. The culture of low expectation was highlighted in five themes: (1) Unsystematic Assessment of Health Status, (2) Purpose of Nursing Health Assessment, (3) The Role of Nursing Educational and Regulatory Institutions, (4) Ward Ethos and (5) The Role of Organizational and Ward Leadership. IMPLICATION: The adoption of a holistic nursing health assessment framework with a clearly defined purpose of aiding nursing diagnoses can guide patient-centred care delivery and facilitate early recognition of physiological deterioration. PATIENT OR PUBLIC CONTRIBUTION: Thirteen registered general nurses were interviewed, and the initial findings returned to them for validation. CONCLUSION: The potential contribution of nursing health assessment to nursing practice and patient outcomes may not be fully realized if nursing health assessment is not situated within a holistic health assessment model with a clearly defined purpose for nursing practice.

"Just a knife wound this week, nothing too painful": An ethnographic exploration of how primary care patients experiencing homelessness view their own health and healthcare.

Community health needs assessments (CHNA) involving qualitative techniques help tailor health services to the specific needs of the population groups for whom they are designed. In light of increasing health disparities amongst people experiencing homelessness (PEH)-and to ensure the integration of their voices into a larger CHNA-this study used an ethnographic approach grounded in a social constructivist research paradigm to explore the perspectives of PEH attending a primary care and addiction service in Ireland on their priority health and healthcare needs. Participant observations and informal interviews were conducted with clients experiencing homelessness attending the service for three hours every Monday morning between October 2022 and April 2023. Field note data from active participant observation and informal conversations were collected, anonymised, and analysed using inductive thematic analysis in accordance with the Declaration of Helsinki and the researchers' institutional Research Ethics Committee. Three main themes emerged from the analysis: self-identified priorities, satisfaction with health services, and migrant health. Clients' priority concerns relate to their mental health and personal safety, strengthening ties with children and families, finding a sense of purpose, and feeling better physically. These challenges differ from those of the general population in terms of their severity observed both prior to and during experiences of homelessness, coupled with disproportionately high levels of loss, fear, pain, fatigue, social stigma and other barriers to accessing satisfactory housing. In terms of services, clients are satisfied with their ability to access primary care and harm reduction in a social environment where positive exchanges with friends and providers take place. Conversely, barriers to accessing mental health and addiction services persist including the internalised belief that one is beyond help, lack of access to information on available services and their entry requirements, and lingering stigma within a health system that treats addiction as separate to health. Moving forward, health practitioners may consider holding more regular and open conversations with clients experiencing homelessness about the care they are receiving, its rationale, and whether or not changes are desired that can be safely made. The health needs of migrants and asylum seekers entering homelessness in Ireland are urgent and should be prioritised in future research.

"If I die for touching him, let me die": a rapid ethnographic assessment of cultural practices and Ebola transmission in high-risk border regions of Tanzania.

BACKGROUND: Ebola Virus Disease (EVD) is a rare but contagious disease caused by Ebola Virus (EBOV). The first Ebola outbreaks were reported in the Democratic Republic of Congo (DRC) before subsequent reported cases in Western and East African countries, including Uganda, which borders Tanzania. Proximity to EVD-infected countries raises the prospect of cross-border transmission, raising alarm in Tanzania. This study aimed to explore the cultural practices likely to prevent or escalate EVD transmission in the event of its outbreak in the country. METHODS: This rapid ethnographic assessment employed observation, interviews, and focus group discussions to collect data from people with diverse characteristics in five regions of Tanzania Mainland namely, Kagera, Kigoma, Mwanza and Songwe regions and Zanzibar Island. The qualitative data was then subjected to thematic analysis. FINDINGS: Cultural practices may escalate the transmission of EVD and hinder its prevention and control. These cultural practices include caring sick people at home, confirmation of death, mourning, and body preparation for burial. Communal life, ceremonies, and social gatherings were other aspects observed to have the potential for compounding EVD transmission and hindering its containment in case of an outbreak. CONCLUSION: Cultural practices may escalate EVD transmission as identified in the study settings. As such, Risk Communication and Community Engagement (RCCE) activities should be interventionist in transforming cultural practices that may escalate the spread of EVD as part of preparedness, prevention, and control efforts in the event of an outbreak.

An Ethnographic Study Concerning the Implementation of Education on Ageing for Older Adults with Mild Intellectual Disability: The Perspective of the Educators.

Despite the fact that longevity in people with intellectual disability has increased at least as much as in the general population, there is a dearth of interventions related to ageing for these older people. Therefore, this study investigated educators' implementation strategies in a new tailor-designed educational intervention with the goal of supporting the process of ageing for people with mild intellectual disability. An ethnographic research design was employed, including participant observations, field notes, and 15 ad hoc interviews with educators, spread over two years in four towns. The strategies used for facilitating learning about ageing were expressed in the two themes promoting social togetherness through everyone's participation and learning together and from each other through recognition and consolidation. These strategies were applied to create a learning environment characterised by a good atmosphere and respectful interaction. Learning together involved consolidation through repetition, group discussions, the use of visual learning materials, and study visits. This new educational intervention about ageing is promising, but less resource-intensive interventions should also be developed and preferably integrated into the disability service. Before concluding whether this education supports the ageing process, it needs to be evaluated from the perspective of people with intellectual disability.

Impaired health in working children: a critical ethnography.

Child labor is one of the important social issues that deprive children of many fundamental rights, and make them face many problems and consequences, including health problems. Thus, this study was conducted with the aim of examining the health of working children in Tehran. This is an ethnographic study that was conducted using Carspecken's approach and was completed in 2022. The main participants of this study included working children aged 10-18 years living in Tehran. In order to collect information, the researcher was present at the workplace, school, and living places of working children for more than two years, observing their lives and activities. Formal and informal interviews were also conducted with the working children and informed people. In total, hundreds of working children were assessed and observed in this research. A friendly conversation was formed between the researcher and more than 50 children, and official interviews were conducted with six of the working children. Also, more than 10 official interviews were conducted with informed people and parents of working children. In addition to observations and interviews, documents such as medical records and drawings of working children were also examined and interpreted. The information obtained from observations, interviews, and documents was entered into MAXQDA software, and its raw codes were extracted. The high-level codes as well as sub and main categories were formed from the aggregation of low-level codes. Impaired health was formed from three subcategories of tormented body (work and environmental trauma, sexual abuse, malnutrition, fatigue, sleep disorder and inadequate hygiene), disquieted mind (anxious children, depression and isolation, reduced self-esteem and unfocused mind) and disrupted sociability (negative social role modeling, aggression and violence, stubbornness and vindictiveness, harassment and nuisance, reprehensible social behaviors, neglecting others' ownership, disturbed relationships and out-group self-censorship). The results of the present study showed that the health of working children is compromised in various physical, psychological, and social ways. Therefore, some measures should be taken at the national and international levels to improve their health, such as revising the existing laws regarding children and informing children of their rights.

Conception, pregnancy, and childbirth from the perspective of transgender men: A meta-ethnography.

BACKGROUND: Transgender men who decide to gestate biologically often face a health system that is highly feminized and discriminatory. In addition, the lack of preparation and knowledge among healthcare professionals leads to the provision of care that fails to meet their specific needs. AIM: To synthesise the experiences of transgender men with regard to conception, pregnancy, and childbirth. METHOD: Ten studies were included in a synthesis of qualitative studies, following the interpretive meta-ethnography method developed by Noblit and Hare and summarized in accordance with the eMERGe meta-ethnography reporting guidelines. RESULTS: The metaphor of a divergent matryoshka dealing with a constricted reality helps us to understand the experiences of conception, pregnancy, and childbirth of transgender men, who often face stigma, discrimination, and marginalization in society and healthcare. The metaphor also highlights the gender dysphoria that arises from the physical changes associated with these processes. Four key themes emerge from this metaphor: (1) The decision to conceive being a trans man; (2) The challenge of adjusting to a new body reality; (3) The significance of navigating in an environment of non-representation; and (4) The marked absence of transsexuality in mainstream healthcare. CONCLUSIONS: Actions should prioritize strengthening ethical sensitivities and improve the training of health professionals to address issues such as gender perspectives, equality, and communication skills. Additionally, social visibility policies need to be implemented.

Prior knowledge of students: essential aspects that a nursing expert professor identifies, interprets, and organizes to foster learning.

Objective: To analyze the essential aspects that the nursing expert professor identifies, interprets, and organizes during classroom dialogic processes with students to foster their learning. Methods: Qualitative study, part of a multicenter study, which used ethnography of communication specifically from a micro-ethnographic approach. An expert professor from the Faculty of Nursing at a public university in Medellín, Colombia, was selected for the study. The fieldwork was done in three stages: 1:non-participant observations in two in-person classes of the Morphophysiology course recorded on video from two different perspectives (one focusing on the professor and another on the students); 2:think-aloud interviews with the professor and five students (three from the first class and two from the second) who spontaneously started more than two communicative interactions with the professor during the classes; and 3:parallel transcriptions, organized in didactic sequences (videos). The analysis was supported by the unit Student-Professor (identification-evaluation-answer) Student [S-P(i-e-a)S'], and by continuous comparisons of the data. Results: Four categories were identified: 1: Identification of essential aspects: importance of prior knowledge, 2: Interpretation: connection between essential aspects and students' mental processes, 3: Organization of the answer: connection between prior knowledge and new knowledge, and: 4: Synchronization with the learning needs of the students, which were grouped in a meta-category: Prior knowledge of the students: essential aspects for learning. Conclusion: Students' experiential prior knowledge constitutes the essential aspects identified, interpreted, and organized by the expert professor to achieve significant learning.

Ecologising Invited and Uninvited Patient Participation in Russia.

INTRODUCTION: Public participation can be both supported and limited by decision-makers. Therefore, citizens either participate in top-down approved formats or have to turn towards subversion. These different participation practices, called invited and uninvited, are often treated by researchers as mutually exclusive. In this article, we present the case of patient organisations' involvement in various state-controlled deliberation bodies in Russia, which does not fit into a smooth binary distinction of the patient participation practice. Instead, identified patient participation practices combine interaction approved by gatekeepers with interaction, which are subversive and grassroots-initiated. Conceptually, it means that invited and uninvited participation can be better understood as intertwined ecologies. METHODS: The article is based on a qualitative ethnographic study, which includes participatory observations of the meetings of state-controlled public participation bodies, such as public councils, 51 semi-structured interviews with members of these bodies and an analysis of the relevant policy and methodological documents. Informed consent to record and transcribe all interviews was obtained. Thematic analysis has been used to produce the results. RESULTS: Russian patient organisations often work informally and independently of state-approved practices expected from them. Some subversive practices happen outside official meetings, others become widely used best practices and others remain everyday mundane interactions, which contribute to the maintenance of the independence of patient organisations against otherwise dominating and nondemocratic state actors. CONCLUSION: The ecologising approach to patient participation, which interprets invited and uninvited practices as interconnected, has better explanatory power for cases in which citizens maintain independence despite all limitations associated with authoritarian settings. Conceptualising invited and uninvited practices as situations, or separate time- and space-bound events, is a helpful theoretical framework for understanding diverse and seemingly contradictory public participation practices. PATIENT OR PUBLIC CONTRIBUTION: Research participants communicated amendments to the initial research framework to incorporate their needs. Repeated interviews allowed triangulation of preliminary findings with research participants. The article is co-authored with the patient organisation representative, who has contributed directly to data analysis and presentation.

Understanding how children and young people with chronic non-cancer pain and their families experience living with pain, pain management and services: a meta-ethnography.

Background: Childhood chronic pain is a widespread public health issue. We need to understand how children with chronic pain and their families experience chronic pain and its management. Objectives: To conduct a meta-ethnography on the experiences and perceptions of children with chronic pain and their families of chronic pain, treatments and services. We investigated how children and their families conceptualise and live with chronic pain; what they think of and want from health and social care services; and what they conceptualise as 'good' pain management. Design: Meta-ethnography with stakeholder and patient and public involvement in the design, search and sampling strategies, analysis and dissemination. Review strategy: comprehensive searches of 12 bibliographic databases and supplementary searches in September 2022, to identify qualitative studies with children aged 3 months to 18 years with chronic non-cancer pain and their families. We included studies with rich explanatory data; appraised methodological limitations using the Critical Appraisal Skills Programme tool; and extracted, analysed and synthesised studies' findings. We used Grading of Recommendations Assessment, Development and Evaluation-confidence in the evidence from reviews of qualitative research to assess confidence in review findings. We integrated findings with 14 Cochrane treatment effectiveness reviews on children's chronic non-cancer pain. Results: We synthesised 43 studies sampled from 170 eligible studies reported in 182 publications. Studies had minor (n = 24) or moderate (n = 19) methodological limitations. Grading of Recommendations Assessment, Development and Evaluation-confidence in the evidence from reviews of qualitative research assessments of review findings were high (n = 22), moderate (n = 13) or very low confidence (n = 1). Moderate and severe chronic pain had profound adverse impacts on family members' well-being, autonomy and self-identity; family dynamics; parenting approaches; friendships and socialising; children's education and parental paid employment. Most children and families sought a biomedical cure for pain. They experienced difficulties seeking and receiving support from health services to manage pain and its impacts. Consequently, some families repeatedly visited health services. Cochrane reviews of intervention effects and trials did not measure some outcomes important to children and families, for example effects of pain on the family and resolution of pain. Reviews have mainly neglected a biopsychosocial approach when considering how interventions work. Limitations: There were limited data on common pain conditions like migraine/headache, abdominal pain; some rarer conditions; children with learning disabilities and under-fives; siblings; fathers and experiences of treatments/services. We excluded studies on cancer, end-of-life pain and experiences of healthcare professionals. Conclusions: We developed the family-centred theory of children's chronic pain management, integrating health and social care with community support. Future work: Future research should explore families' experiences of services and treatments, including opioids, and social care services; experiences of children with autism and learning disabilities, under 5 years old and with certain common pain conditions. We need development and testing of family-centred interventions and services. Study registration: This study is registered as PROSPERO (CRD42019161455) and Cochrane Pain, Palliative and Supportive Care (623). Funding: This award was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (NIHR award ref: NIHR128671) and is published in full in Health and Social Care Delivery Research; Vol. 12, No. 17. See the NIHR Funding and Awards website for further award information.

Chronic pain lasting 3 months or more affects at least 8% of children in the UK. It causes difficulties with many aspects of children's lives including relationships, school attendance and use of National Health Services. In the UK, there are few specialist services and a lack of high-quality research for managing children's chronic pain. Our study aimed to locate and pull together existing research on the experiences and views of children with chronic pain and their families. We wanted to find out how they think about and live with chronic pain, and their views and experiences of services and treatments, and what they want to achieve from them. We conducted this study alongside children with chronic pain and their families, charities, healthcare professionals and academic experts. They helped us to conduct the study and to ensure our findings are relevant to children, families and the National Health Service. We pulled together data from 43 studies that best answered our questions. We found that moderate and severe children's chronic pain that was not well managed affected the whole family, including their relationships and social lives. Families found it difficult to get help and a diagnosis from health services. Most families wanted a medical cure for pain. Families had long waits for answers and treatment but gradually realised there may be no cure, so they focused on living well with pain or gave up hope. Children and families from ethnic minority groups or with a learning disability experienced discrimination. Few studies focused on children under 5 years old, children with learning disabilities or experiences of services. Families need a pain management approach tailored to the whole family's needs involving schools, social care and health services. Our findings could improve treatment guidelines, training of health and social care professionals and service design and treatments.

The influence of actors on the content and execution of a bereavement programme: a Bourdieu-inspired ethnographical field study in Sweden.

Introduction: The death of a parent can have profound negative impacts on children, and a lack of adequate support can exacerbate negative life experiences. Aim: To explore the influences of various actors on the content and execution of a bereavement programme within a Swedish context, considering relational and contextual perspectives. Methods: An ethnographic field study involving six children, their parents, and eight volunteers. A theory-inspired thematic analysis was conducted, methodically inspired by Braun and Clarke, theoretically inspired by Bourdieu's concepts of position, power, and capital. Results: Confidentiality obligation was an essential element in the programme, however, the premisses varied depending on actors' positions. Volunteers and researchers had different outlets to express their experiences in the program. The programme offered the children an exclusive space for talking about and sharing experiences and feelings. Simultaneously, the programme restricted the children by not allowing them to share their experiences and feelings outside the physical space. The physical settings shaped the different conditions for interactions among the actors. The sessions adopted loss-oriented approaches, where communication between volunteers and children was guided by the volunteers. However, children created strategies for additional, voiceless communication with their peers or themselves. During breaks and mingles, shared interests or spaces connected children (and adults) more than their common experience of parental bereavement. Conclusion: The participants in the programme were significantly influenced by the structural framework of the programme, and their positions within the programme provided them with different conditions of possibility for (inter)acting. Children's daily activities and interests were both ways to cope with parental bereavement and connect them to other people.

Dementia Friendly Communities: Micro-processes and practices observed locally in Queensland Australia.

Having the choice to stay living in one's home and community for as long as possible is a desire of people living with dementia. Yet, for many, this is not a reality due to a lack of appropriate support, unsuitable housing and built environments, social exclusion, and stigma. The global movement called Dementia Friendly Communities aims to address such barriers and bring about positive change. At the local place-based level, Dementia Friendly Community initiatives are typically planned and implemented by committees, yet little is known about how they operate to enact Dementia Friendly Community principles. Using micro-ethnography and a case study approach, two Australian - Queensland Dementia Friendly Community committees and their activities were studied to better understand implementation at the local level. This involved 16 semi-structured interviews, participant observation and field notes identifying goals, approaches, and tensions. While both committees showed the capacity to raise awareness of issues impacting people living with dementia, there were substantial differences in the implementation of the key Dementia Friendly Community principle of inclusion of people living with dementia and carers. Key differences were the way people living with dementia were positioned and the part they were expected to play in committees, whether they were empowered and valued or tokenistically included yet not listened to. Three aspects of practice are central to more meaningful inclusion: engagement, power-sharing, and leadership. Local action groups directed and led by people living with dementia and their carers, with the support of key local people and organizations, help to progress Dementia Friendly Communities locally.

Exploring experiential differences in everyday activities - A focused ethnographic study in the homes of people living with memory-led Alzheimer's disease and posterior cortical atrophy.

BACKGROUND: Supporting ageing in place, quality of life and activity engagement are public health priorities for people living with dementia, but little is known about the needs and experiences of community-dwelling people with rarer forms of dementia with lesser known symptoms. Posterior cortical atrophy (PCA) is a rare form of dementia usually caused by Alzheimer's disease but which is characterised by diminished visual processing (rather than a dominant memory problem), which poses challenges for maintaining independence and accessing appropriate support. METHODS: This study used a comparative qualitative design and focussed ethnographic methods to explore experiential differences in activity engagement for 10 people with the most common, memory-led presentation of Alzheimer's disease and 10 people with posterior cortical atrophy within their everyday home environments. RESULTS: While the data collection revealed much rich variation in individual and contextual factors, some tentative high-level differences in the experiences of everyday activities could be drawn out, seemingly attributable to the different diagnoses' differing dominant symptoms. These included people with posterior cortical atrophy being less likely to use environmental cues to initiate activities, and more likely to withhold from asking for support because of preserved insight into the impact of this on carers. This lack of initiation of activities could be misinterpreted as apathy. People with posterior cortical atrophy also were discouraged from engaging in activities by disorientation within the home, and difficulties localising, identifying and manipulating objects. People with the more common, memory-led presentation of Alzheimer's disease exhibited more memory-based difficulties with engaging with activities such as forgetting planned activities, where to locate the items required for an activity and the steps involved. Despite these distinct symptom-led challenges, all participants and their family members demonstrated resourcefulness and resilience in making creative adaptations to support continued engagement in everyday activities, supporting the widely reported management strategies of people with dementia of the Alzheimer's type more generally. CONCLUSIONS: These findings offer helpful insights into some the differing impacts dementia related visual and memory impairments can have on everyday activity engagement, which will be helpful for others navigating these challenges and the health and social care practitioners working with people affected by these conditions. The findings also highlight the vast individual variation in the multitude of individual and contextual factors involved in everyday activity engagement, and suggest important areas for future work utilising methods which are similarly high in ecological validity and accessibility as the home-based focussed ethnographic methods utilised here.

Ageism and lookism as stereotypes of health disparity in intensive care units in Iran: a critical ethnography.

BACKGROUND: The intensive care unit presents structural complexities, and the prevailing power imbalance between patients and staff can lead to health disparities. Hence, unveiling the underlying factors that give rise to and reinforce these disparities can contribute to their prevention. This study aims to shed light on the stereotypes linked to ageism and lookism, which perpetuate health disparities within the intensive care unit setting in Iran. METHODS: This critical ethnographic study employed Carsepkan's approach and was carried out in intensive care units in the west of Iran from 2022 to 2023. The data collection and analysis were conducted through three interconnected stages. In the initial stage, more than 300 h of observations were made at the research site. In the subsequent stage, a horizon analysis was performed. Conversations with 14 informants were conducted in the final stage to enrich the dataset further. Then the analysis process was carried out as in the previous step to uncover an implicit culture of health disparity. To verify the validity and reliability of the study, credibility, conformability, dependability, and transferability were all taken into account. FINDINGS: The ageism and lookism stereotypes emerged from seven main themes; youth-centric; negative ageism; age-friendliness; age-related priority; centered care for pediatric patients and families; appearance-centeredness; and a contradiction between belief and behavior. CONCLUSION: This critical study showed that ageism and lookism stereotypes permeated the intensive care unit's culture. These stereotypes have the potential to influence equality dynamics, as well as to foster and support health disparity in the intensive care unit.