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.

What is quality in long covid care? Lessons from a national quality improvement collaborative and multi-site ethnography.

BACKGROUND: Long covid (post covid-19 condition) is a complex condition with diverse manifestations, uncertain prognosis and wide variation in current approaches to management. There have been calls for formal quality standards to reduce a so-called "postcode lottery" of care. The original aim of this study-to examine the nature of quality in long covid care and reduce unwarranted variation in services-evolved to focus on examining the reasons why standardizing care was so challenging in this condition. METHODS: In 2021-2023, we ran a quality improvement collaborative across 10 UK sites. The dataset reported here was mostly but not entirely qualitative. It included data on the origins and current context of each clinic, interviews with staff and patients, and ethnographic observations at 13 clinics (50 consultations) and 45 multidisciplinary team (MDT) meetings (244 patient cases). Data collection and analysis were informed by relevant lenses from clinical care (e.g. evidence-based guidelines), improvement science (e.g. quality improvement cycles) and philosophy of knowledge. RESULTS: Participating clinics made progress towards standardizing assessment and management in some topics; some variation remained but this could usually be explained. Clinics had different histories and path dependencies, occupied a different place in their healthcare ecosystem and served a varied caseload including a high proportion of patients with comorbidities. A key mechanism for achieving high-quality long covid care was when local MDTs deliberated on unusual, complex or challenging cases for which evidence-based guidelines provided no easy answers. In such cases, collective learning occurred through idiographic (case-based) reasoning, in which practitioners build lessons from the particular to the general. This contrasts with the nomothetic reasoning implicit in evidence-based guidelines, in which reasoning is assumed to go from the general (e.g. findings of clinical trials) to the particular (management of individual patients). CONCLUSION: Not all variation in long covid services is unwarranted. Largely because long covid's manifestations are so varied and comorbidities common, generic "evidence-based" standards require much individual adaptation. In this complex condition, quality improvement resources may be productively spent supporting MDTs to optimise their case-based learning through interdisciplinary discussion. Quality assessment of a long covid service should include review of a sample of individual cases to assess how guidelines have been interpreted and personalized to meet patients' unique needs. STUDY REGISTRATION: NCT05057260, ISRCTN15022307.

Lifestyles associated with malaria in pregnancy in northwest Colombia: a mixed study from Latin American critical epidemiology.

BACKGROUND: In the scientific literature on Malaria in Pregnancy (MiP), no studies have been conducted on lifestyles based on critical theory. The objective of this study was to analyse the lifestyles or singular processes of social determination of health in MiP in northwestern Colombia. METHODS: Mixed QUAN-QUAL convergent triangulation study. In the quantitative component, a psychometric evaluation and a cross-sectional design were conducted in 400 pregnant women to whom the Pender-Walker lifestyle scale and a survey on MiP prevention were applied. In the qualitative study, a critical ethnography was conducted with 46 pregnant women in whom their narratives and practices regarding lifestyles at home and healthcare were described. RESULTS: The frequency of MiP was 9%, and a higher occurrence of the disease was identified in those who did not control stagnant water (29%), did not use insecticide-treated net (16%) and went to the hospital (14%) or the microscopist (20%) when they had fever. This coincides with the presence of unhealthy lifestyles, little knowledge about malaria, and a low perception of the risk of getting sick, as well as meanings and experiences about MiP, maternity, and pregnancy that show a high clinical, cultural, and socioeconomic burden for the women studied. CONCLUSION: This epidemiological profile and the approach to lifestyles based on the postulates of critical theory in health evidence that pregnant women exposed to malaria suffer serious social, cultural and health injustices that are not possible to impact with the current health model of malaria control in Colombia guided by aetiopathogenic, biomedical, positivist and utilitarian theories.

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.

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

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

Identifying Facilitators and Inhibitors of Shared Understanding: An Ethnography of Diagnosis Communication in Acute Medical Settings.

BACKGROUND AND AIMS: Communication is important in determining how patients understand the diagnostic process. Empirical studies involving direct observation of communication within diagnostic processes are relatively limited. This ethnographic study aimed to identify communicative practices facilitating or inhibiting shared understanding between patients and doctors in UK acute secondary care settings. METHODS: Data were collected in acute medical sectors of three English hospitals. Researchers observed doctors as they assessed patients; semistructured interviews were undertaken with doctors and patients directly afterwards. Patients were also interviewed 2-4 weeks later. Case studies of individual encounters (consisting of these interviews and observational notes) were created, and were cross-examined by an interdisciplinary team to identify divergence and convergence between doctors' and patients' narratives. These data were analysed thematically. RESULTS: We conducted 228 h of observation, 24 doctor interviews, 32 patient interviews and 15 patient follow-up interviews. Doctors varied in their communication. Patient diagnostic understanding was sometimes misaligned with that of their doctors; interviews revealed that they often made incorrect assumptions to make sense of the fragmented information received. Thematic analysis identified communicative practices that seemed to facilitate, or inhibit, shared diagnostic understanding between patient and doctor, revealing three themes: (1) communicating what has been understood from the medical record, (2) sharing the thought process and diagnostic reasoning and (3) closing the loop and discharge communication. Shared understanding was best fostered by clear communication about the diagnostic process, what had already been done and what was achievable in acute settings. Written information presents an underutilised tool in such communication. CONCLUSIONS: In UK acute secondary settings, the provision of more information about the diagnostic process often fostered shared understanding between doctor and patient, helping to minimise the confusion and dissatisfaction that can result from misaligned expectations or conclusions about the diagnosis, and the uncertainty therein. PATIENT/PUBLIC CONTRIBUTION: A patient and public involvement group (of a range of ages and backgrounds) was consulted. They contributed to the design of the protocol, including the timing of interviews, the acceptability of a follow-up telephone interview, the development of the interview guides and the participant information sheets.

Older adults' perceptions and experiences of interprofessional communication as part of the delivery of integrated care in the primary healthcare sector: a meta-ethnography of qualitative studies.

BACKGROUND: Communication between patients and healthcare providers, and effective interprofessional communication, are essential to the provision of high-quality care. Implementing a patient-centred approach may lead to patients experiencing a sense of comfort, validation, and active participation in own healthcare. However, home-dwelling older adults' perspectives on interprofessional communication (IPC) are lacking. The aim is therefore to explore how home-dwelling older adults experience communication in connection with the delivery of integrated care. METHODS: The meta-synthesis was conducted in line with Noblit and Hare's seven phases of meta-ethnography. A systematic literature search was conducted by two university librarians in seven databases using the search terms 'older adults', 'communication', 'integrated care' and 'primary care'. All articles were reviewed by two authors independently. 11 studies were included for analysis. RESULTS: Older adults are aware of IPC and have preferences regarding how it is conducted. Three main themes were identified in the reciprocal analysis: (1) Inconsistent care perceived as lack of IPC, (2) individual preferences regarding involvement and awareness of IPC and (3) lack of IPC may trigger negative feelings. CONCLUSIONS: This meta-ethnography shows the perspective of older adults on IPC as part of integrated care. Our study shows that older adults are concerned about whether healthcare personnel talk to each other or not and recognise IPC as fundamental in providing consistent care. The perspectives of older adults are relevant for clinicians and politicians, as well as researchers, when developing and implementing future integrated care services for home-dwelling older adults.

Tensions between real-world practices and the digitalization paradigm for data-driven services in eldercare: observations from an ethnographic study in Sweden.

BACKGROUND: The implementation of a data-driven approach within the health care system happens in a rapid pace; including in the eldercare sector. Within Swedish eldercare, data-driven health approach is not yet widely implemented. In the specific context of long-term care for older adults, quality of care is as much determined by how social care is being performed as it is by what kind medical care that is provided. In particular, relational aspects have been proven to have a crucial influence on the experience of quality of care for the actors involved. Drawing on ethnographic material collected at a Swedish nursing home, this paper explores in what way the relational aspects of care could potentially become affected by the increased use of a data-driven health approach. METHODS: An ethnographic approach was adopted in order to investigate the daily care work at a long-term care facility as it unfolded. Fieldwork was conducted at a somatic ward in a Swedish long-term care facility over 4 months (86 h in total), utilizing the methods of participant observation, informal interviews and document analysis. The material was analyzed iteratively throughout the entire research process adopting thematic analysis. RESULTS: Viewing our ethnographic material through an observational lense problematising the policy discourse around data-driven health approach, two propositions were developed. First, we propose that relational knowledge risk becoming less influential in shaping everyday care, when moving to a data-driven health approach. Second, we propose that quality of care risk becoming more directed on quality of medical care at the expense of quality of life. CONCLUSION: While the implementation of data-driven health approach within long-term care for older adults is not yet widespread, the general development within health care points towards a situation in which this will become reality. Our study highlights the importance of taking the relational aspects of care into consideration, both during the planning and implementation phase of this process. By doing this, the introduction of a data-driven health approach could serve to heighten the quality of care in a way which supports both quality of medical care and quality of life.

Older adults experience of transition to the community from the emergency department: a qualitative evidence synthesis.

AIM: Older adults comprise a growing proportion of Emergency Department (ED) attendees and are vulnerable to adverse outcomes following an ED visit including ED reattendance within 30 days. Interventions to reduce older adults' risk of adverse outcomes following an ED attendance are proliferating and often focus on improving the transition from the ED to the community. To optimise the effectiveness of interventions it is important to determine how older adults experience the transition from the ED to the community. This study aims to systematically review and synthesise qualitative studies reporting older adults' experiences of transition to the community from the ED. METHODS: Six databases (Academic Search Complete, CINAHL, MEDLINE, PsycARTICLES, PsycINFO, and Social Science Full Text) were searched in March 2022 and 2023. A seven-step approach to meta-ethnography, as described by Noblit and Hare, was used to synthesise findings across included studies. The methodological quality of the included studies was appraised using the 10-item Critical Appraisal Skills Programme (CASP) checklist for qualitative research. A study protocol was registered on PROSPERO (Registration: CRD42022287990). FINDINGS: Ten studies were included, and synthesis led to the development of five themes. Unresolved symptoms reported by older adults on discharge impact their ability to manage at home (theme 1). Limited community services and unresolved symptoms drive early ED reattendance for some older adults (theme 2). Although older adults value practical support and assistance transporting home from the ED this is infrequently provided (theme 3). Accessible health information and interactions are important for understanding and self-managing health conditions on discharge from the ED (theme 4). Fragmented Care between ED and community is common, stressful and impacts on older adult's ability to manage health conditions (theme 5). A line of argument synthesis integrated these themes into one overarching concept; after an ED visit older adults often struggle to manage changed, complex, health and care needs at home, in the absence of comprehensive support and guidance. DISCUSSION/ CONCLUSION: Key areas for consideration in future service and intervention development are identified in this study; ED healthcare providers should adapt their communication to the needs of older adults, provide accessible information and explicitly address expectations about symptom resolution during discharge planning. Concurrently, community health services need to be responsive to older adults' changed health and care needs after an ED visit to achieve care integration. Those developing transitional care interventions should consider older adults needs for integration of care, symptom management, clear communication and information from providers and desire to return to daily life.

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.

Understanding the interplay between organisational injustice and the health and wellbeing of female police officers: a meta-ethnography.

BACKGROUND: Female police officers are reported to encounter more bias, discriminatory practices, and inadequate support than their male counterparts and experience poorer health outcomes. This meta-ethnographic review looks beyond individual responsibilities to consider which aspects of policing impact the health and well-being of female police officers. METHODS: Primary qualitative and mixed method studies published between 2000 and 2024 were included. ProQuest (all databases) and Ovid (Medline and Embase) were searched using terms related to health, wellbeing, females, police, and qualitative research. This was a cross-jurisdictional review, with no limit on country of study. In total, twenty-one papers met the inclusion criteria. A seven-phase inductive and interpretative meta-ethnographic technique was employed to synthesise, analyse, and interpret the data. RESULTS: The data analysis revealed a distinct outcome that demonstrated a strong relationship and substantial impacts of organisational injustice on the health and well-being of female police officers. Our findings showed that organisational injustice, encompassing procedural, relational, distributive, and gendered injustice, significantly influences the health and well-being of female officers. Impacts on mental health were commonly discussed, followed by aspects influencing social health, workplace wellbeing, and physical health. Moreover, the effects of these four forms of organisational injustice and the associated cultural, systemic, and structural risk factors extend beyond the immediate health and wellbeing impacts on the individual female officer through impeding other aspects of their work life, such as career progression and work-life balance, that can further impact long-term health and well-being. CONCLUSION: This review highlights the importance of addressing organisational injustice and the cultural, systemic, and structural risk factors within policing to promote healthier and more inclusive workforces for female officers. Policymakers and practitioners should critically examine policies and practices that may appear gender neutral but disproportionately impact women, affecting the health and well-being of female police officers. By addressing these issues, transformative action can be taken to create safer, more supportive, and healthier working environments for female police officers.

Exploring fathers' experiences of caring for a child with complex care needs through ethnography and arts-based methodologies.

BACKGROUND: Although the number of children living with complex care needs (CCN) is increasing worldwide, there is limited data on the experience of fathers caring for children with CCN. This paper reports on findings specific to fathers' experiences of caring for their child with CCN and highlights recommendations provided for parents of children with CCN, service providers, and policymakers. The findings emerged from a larger study designed to examine how Canadian families of children with CCN participate in society. METHODS: We used the qualitative research approach of ethnography and arts-based methodologies (ecomaps and photovoice) as well as purposive and snowball sampling techniques. Four parents were engaged as advisors and twenty-nine fathers participated in interviews (all were married or in a relationship; age range of 28 to 55 years). In line with an ethnographic approach, data analysis involved several iterative steps including comparing data from the first, second, and third set of interviews and refining themes. RESULTS: One overarching theme, striving to be there for the child with CCN, was identified. Five supporting themes further exemplified how fathers strived to be there for their child: 1) contributing to the parental team through various roles; 2) building accessibility through adaptation; 3) engaging in activities with the child; 4) expressing admiration and pride in their children; and 5) meaning making. Recommendations for parents included making and nurturing connections and asking for help while recommendations for healthcare and social service providers included communicating authentically with families and listening to parents. Fathers also indicated that leadership and funding for programs of families of children with CCN should be priorities for policymakers. CONCLUSIONS: In addition to documenting fathers' active involvement in their child's care and development, our findings provide new insights into how fathers make participation in everyday life accessible and inclusive for their children. Study findings also point to 1) priority areas for policymakers (e.g., accessible physical environments); 2) factors that are critical for fostering collaborative care teams with fathers; and 3) the need for complex care teams in the adult health care system. Implications for those providing psychosocial support for these families are noted as well as knowledge gaps worthy of future exploration such as the role of diversity or intersectionality in fathering children with CCN.

Exploring unequal class logics of mealtime food socialisation. An ethnography of family meals in France and Australia.

Regular family mealtimes are occasions to model food consumption and have been associated with health and well-being benefits for children. This study aimed to investigate children's mealtime food socialisation in socially diverse households. Nine families from France and five from Australia were recruited, ranging from lower middle-class to upper-class positions, with children mostly between the ages of five to eight. The data is composed of the observations of 47 mealtimes and semi-directive interviews with both parents. The results showed that food socialisation and parents' understanding of children's taste development were linked to the household's social class position as well as to the temporal, cognitive and emotional resources parents possessed at mealtimes, in a similar manner across France and Australia. The more capital and resources the parents had, the more they were able to perform an intensive food socialisation style, which led them to prepare balanced menus and get children to eat the food served. The less capital and resources the parents had, the more they engaged in a hands-off food socialisation style, leading them to serve more child-oriented and less diverse menus. Importantly, all parents strived to serve healthy food, but limited resources prevented some of them from doing so. These food socialisation styles were also connected to the development of different social skills in children: with the intensive model, children were closely managed by their parents at the table but also learnt negotiation skills, whereas with the hands-off style, children learnt to be quite autonomous in their eating. The findings presented here contribute to Hays' intensive mothering concept and to Lareau's class-based parenting models. They also challenge Bourdieu's differentiation between a taste of necessity and a taste of luxury.

Translational or translationable? A call for ethno-immersion in (empirical) bioethics research.

The shift towards "empirical bioethics" was largely triggered by a recognition that stakeholders' views and experiences are vital in ethical analysis where one hopes to produce practicable recommendations. Such perspectives can provide a rich resource in bioethics scholarship, perhaps challenging the researcher's perspective. However, overreliance on a picture painted by a group of research participants-or on pre-existing literature in that field-can lead to a biased view of a given context, as the subjectivity of data generated in these ways cannot (and should not wholly) be escaped. In response, we propose the implementation of a complementary approach of ethno-immersion in bioethics research. By positioning oneself in the context being researched, the researcher can better understand the realities of that context. The researcher's understanding will, naturally, be subjective too. However, it will act as a better developed and more informed outsider view, when considering the picture painted by participants and previous studies, thus enabling the researcher to introduce more nuance when analysing data. We introduce this approach after examining what we call the context detachment problem, whereby some bioethics scholarship-empirical or otherwise-fails to reflect the reality of the healthcare setting it concerns. Our proposed ethno-immersion (which differs from formal ethnography) is then explored as a response, highlighting its benefits, and answering the question of timing within a research project. Finally, we reflect on the applicability of our proposal to non-empirical bioethics scholarship, concluding that it remains important but may require some adjustments.

Implementing a new living concept for persons with dementia in long-term care: evaluation of a quality improvement process.

BACKGROUND: Improving quality of nursing home care for residents is a constant focus of stakeholders involved within quality improvement projects. Though, achieving change in long-term care is challenging. Process evaluations provide insight into the nature, exposure and experiences of stakeholders and influencing mechanisms for implementation. The aim of this study is to gain insight into the process and facilitating and hindering mechanisms of implementing a quality improvement project that seeks to create a dementia-friendly community with a nursing home at its core. METHODS: For the process evaluation we planned a case study design with an ethnographic approach. Various research methods were used: qualitative observations, focus groups, interviews and questionnaires for various stakeholders and document review. Data collection and analyses in this study is based on the Consolidated Framework for Implementation Research. RESULTS: Four main lessons were learned. Firstly, nursing staff are crucial to achieve more freedom for residents. Secondly, high-impact changes in daily care need strong and sustainable focus from the care organisation. Thirdly, dementia-friendly societies should be deployed from multiple actors, which entails long-term collaborations with external stakeholders. Fourthly, the transition to a dementia-friendly society requires meeting spaces for and a focus on both residents and people from the community. Consequently, local residents are shifting from external to internal stakeholders, extending beyond the regular involvement of informal carers and volunteers within the nursing home. CONCLUSIONS: Nursing homes are part of the local community and provide opportunities to collaborate on a dementia-friendly society. However, the change that is required (promoting freedom, residents' autonomy and the redesign of care processes) is complex and influenced by various mechanisms. Understanding these mechanisms can benefit other care organisations that strive to implement a similar initiative.

Experiences of young people growing up in a family with Huntington's disease: A meta-ethnography of qualitative research.

Huntington's disease is a genetic neurodegenerative condition with wide physical and psychological impacts. Children of a parent with the condition have a 50% chance of carrying the gene expansion and developing the condition themselves. This systematic review and meta-ethnography presents a synthesis of the qualitative research on the experiences of young people growing up in a family with Huntington's disease. The MEDLINE, PsycINFO, and CINAHL databases were systematically searched, and 13 papers met the inclusion criteria. Through the process of meta-ethnography, four themes were identified highlighting aspects of childhood that were stolen and fought for: thief of relationships, thief of self, thief of transparency, and search for reclamation. Within the themes, the complex challenges young people faced when growing up in a HD family were explored such as the impact of adverse childhood experiences and the possible effects of HD on attachment and social relationships. Clinical implications are considered, and recommendations are made for future research.

Pragmatic patchwork ethnography, a call to action for health, nutrition and dietetic researchers.

Qualitative research methods are increasingly used in nutrition and dietetics research. Ethnography is an underexploited approach which seeks to explore the diversity of people and cultures in a given setting, providing a better understanding of the influences that determine their choices and behaviours. It is argued that traditional ethnography, that is, the methodology of living within participant communities, is a dated practice, with roots in colonialism, accessible to only researchers with the means, connections and status to conduct such research, typically white, privileged males. This paper proposes a formal interpretation of 'patchwork ethnography', whereby research is carried out in situ around existing modern-day commitments of the researcher, thus enabling more researchers within health, nutrition and dietetic practice to benefit from the rich data that can be discovered from communities. This review proposes the concept that pragmatic patchwork ethnography is required, proposing a framework for implementation, providing researchers, particularly within the fields of human nutrition, dietetics and health, the accessibility and means to deploy a meaningful client-centric methodology. We present pragmatic patchwork ethnography as a modern method for use within multiple healthcare settings, thus adding a progressive brick in the wall of qualitative research.

Taking after a parent: Phenotypic resemblance and the professional familialisation of genomics.

This article draws on 2 years' worth of ethnographic observation of team meetings to explore decision-making in an NHS clinical genomics service. The focus of discussions was on ambiguous genomic results known as VUS or Variants of Uncertain Significance, which may be pathogenic but which also may turn out to be benign. In examining decision-making around such results, we note how, in contrast to much policy and promotional material in this area, clinicians in these meetings (clinical geneticists and genetic counsellors) place great emphasis on parental phenotypes and whether the parents of a patient share the symptoms and signs of the suspected condition. This information is then combined with the result of genomic tests to decide whether the variant a patient has is responsible for their condition. This article explores the way in which clinicians attempt to flexibly enrol parents into genomic explanations through informal diagnosis of their possible phenotypes and the way in which actually meeting parents allows some clinicians to trump explanations based on documentary or photographic data. The paper sheds light on the way that earlier scholarly understandings of such decisions (around, say dysmorphology) remain relevant and explores claims that laboratory tests overrule clinical decision-making.

Reconciling healthism and techno-solutionism: An observational study of a digital mental health trial.

In a growing trend in digital psychiatry, algorithmic systems are used to determine correlations between data that is collected using wearable devices and self-reports of mood. They then offer recommendations for behaviour modification for improved mood. The present study consists of observations of the development of one of these systems. Descriptions of the trial emphasise the powerful role of the intrinsically motivated, responsible participant on one hand and the empowering machine learning (ML)-based technology on the other. This conceptualisation is shown to extend the neoliberal paradox of a freedom that, to be maintained, must be continually adjusted through discipline. Because of the paradoxical nature of this formulation, laboratory members disagree about the balance of agency between the objective machine learning system and the empowered participant. The guides who help participants interpret ML outputs and implement system recommendations are ascribed a replaceable role in formal accounts. Observations of this guidance practice make clear not only the important role played by guides but also how their work is relegated to the technological side of the broader formulation of the trial and further how this conceptualisation affects the way they conduct their work.

The ritualisation of the surgical safety checklist and its decoupling from patient safety goals.

Patient harm, patient safety and their governance have been ongoing concerns for policymakers, care providers and the public. In response to high rates of adverse events/medical errors, the World Health Organisation (WHO) advocated the use of surgical safety checklists (SSC) to improve safety in surgical care. Canadian health authorities subsequently made SSC use a mandatory organisational practice, with public reporting of safety indicators for compliance tied to pre-existing legislation and to reimbursements for surgical procedures. Perceived as the antidote for socio-technical issues in operating rooms (ORs), much of the SSC-related research has focused on assessing clinical and economic effectiveness, worker perceptions, attitudes and barriers to implementation. Suboptimal outcomes are attributed to implementations that ignored contexts. Using ethnographic data from a study of SSC at an urban teaching hospital (C&C), a critical lens and the concepts of ritual and ceremony, we examine how it is used, and theorise the nature and implications of that use. Two rituals, one improvised and one scripted, comprised C&C's SSC ceremony. Improvised performances produced dislocations that were ameliorated by scripted verification practices. This ceremony produced causally opaque links to patient safety goals and reproduced OR/medical culture. We discuss the theoretical contributions of the study and the implications for patient safety.