Older people's perceptions and experiences of older people with the Sit-to-stand activity: An ethnographic pre-feasibility study / Percepções e experiências de idosos com a atividade Sit-to-stand: Um estudo etnográfico de pré-viabilidade / Percepciones y experiencias de los adultos mayores con respecto a la actividad Sit-to-stand: Un estudio etnográfico de viabilidad previa

Abstract Objective: the purpose of this pre-feasibility study was to examine perceptions and experiences of a Sit-to-stand activity with urban Brazilian community-dwelling older people in their homes. Method: the exploration method was focused ethnography. Purposive sampling was used to recruit 20 older people. Five means of data generation were used, namely: socio-demographic surveys, participant observations, informal interviews, formal semi-structured interviews, and field notes. Data analysis was qualitative content analysis. Results: the experience of mobility-challenged older people with the Sit-to-stand activity was dependent on their mobility expectations involving many factors that worked together to influence their beliefs and attitudes towards the activity, preferences, behaviors, and cultural perceptions. The participants of this study seemed to find the activity enjoyable; however, the most noticeable shortcomings for their engagement in the Sit-to-stand activity emerged as gaps in their personal and intrapersonal needs. Conclusion: the recommendations generated from the study findings call for the design of implementation strategies for the Sit-to-stand intervention that are tailored to this particular population's needs.

Resumo Objetivo: o objetivo deste estudo de pré-viabilidade foi examinar percepções e experiências da atividade de Sit-to-stand com idosos brasileiros residentes em suas casas, no meio urbano. Método: o método exploratório foi etnografia focada. Foi utilizada a amostragem intencional para recrutar 20 idosos. Foram utilizados cinco meios de geração de dados: inquéritos sociodemográficos, observações participantes, entrevistas informais, entrevistas formais semiestruturadas e notas de campo. Os dados foram analisados mediante análise de conteúdo qualitativo. Resultados: a experiência dos idosos com problemas de mobilidade na realização da atividade Sit-to-stand dependia de suas expectativas de mobilidade envolvendo muitos fatores coordenados que, de forma conjunta, influenciaram suas crenças e atitudes em relação à atividade, suas preferências, seus comportamentos e percepções culturais. Os participantes deste estudo pareciam considerar a atividade aprazível; no entanto, as deficiências mais perceptíveis para o engajamento dos participantes na atividade Sit-to-stand surgiram de falhas em suas necessidades pessoais e intrapessoais. Conclusão: as recomendações geradas a partir dos achados do estudo convocam a concepção de estratégias de implementação da intervenção Sit-to-stand adaptadas às necessidades dessa população em particular.

Resumen Objetivo: el propósito de este estudio de viabilidad previa fue examinar percepciones y experiencias con respecto a la actividad Sit-to-stand entre los adultos mayores de Brasil que viven en sus hogares en comunidades urbanas. Método: el método de exploración se enfocó en la etnografía. Se utilizó muestreo intencional para reclutar 20 adultos mayores. Se emplearon cinco medios para generar datos, a saber: encuestas sociodemográficas, observaciones participantes, entrevistas informales, entrevistas formales semiestructuradas y notas de campo. Para el análisis de los datos se recurrió a análisis de contenido cualitativo. Resultados: la experiencia de los adultos mayores con problemas de movilidad en relación con la actividad Sit-to-stand dependió de sus expectativas en torno a la movilidad, las cuales implicaron muchos factores que actuaron en conjunto para influenciar sus creencias y actitudes con respecto a la actividad, al igual que preferencias, conductas y percepciones culturales. Aparentemente, a los participantes de este estudio la actividad les resultó amena; sin embargo, los inconvenientes más notorios para adoptar la actividad Sit-to-stand surgió en la forma de déficits en sus necesidades personales e intrapersonales. Conclusión: las recomendaciones resultantes de los hallazgos del estudio indican la necesidad de diseñar estrategias de implementación para la intervención Sit-to-stand a la medida de las necesidades de este grupo poblacional específico.

The sexuality experience of stoma patients: a meta-ethnography of qualitative research.

BACKGROUND: As the quality of life of stoma patients has become a research hotspot, sexual health as an integral part of patients' lives has received more and more attention. However, there is a lack of comprehensive reviews on the sexual experiences of patients with stomas. This study aims to synthesize the qualitative literature on the subjective experience of stoma patients' sexual life, to identify their sexual needs, and to provide evidence for the content and methods of sexual health interventions for healthcare professionals. METHODS: PubMed, Embase, Web of Science, CINAHL, and Scopus were searched for qualitative studies on the sexual experience of stoma patients (from the inception to January 2023). Titles, abstracts, and full texts were reviewed by two researchers. We used the Critical Appraisal Program (CASP) checklist to assess the quality of included articles. RESULTS: A total of 1388 articles were retrieved, and eight studies were included. Data was extracted, including three main themes: 1) sexual problems due to changes in physical function and psychological disorders; 2) the relationship with spouse changes; 3) the cognition of sexual life and the need for sexual knowledge. CONCLUSION: Healthcare professionals should pay attention to the sexual life status and sexual health needs of stoma patients and their partners, and give professional guidance and support in treatment and nursing to improve the quality of sexual life of stoma patients.

Predictive care: a protocol for a computational ethnographic approach to building fair models of inpatient violence in emergency psychiatry.

INTRODUCTION: Managing violence or aggression is an ongoing challenge in emergency psychiatry. Many patients identified as being at risk do not go on to become violent or aggressive. Efforts to automate the assessment of risk involve training machine learning (ML) models on data from electronic health records (EHRs) to predict these behaviours. However, no studies to date have examined which patient groups may be over-represented in false positive predictions, despite evidence of social and clinical biases that may lead to higher perceptions of risk in patients defined by intersecting features (eg, race, gender). Because risk assessment can impact psychiatric care (eg, via coercive measures, such as restraints), it is unclear which patients might be underserved or harmed by the application of ML. METHODS AND ANALYSIS: We pilot a computational ethnography to study how the integration of ML into risk assessment might impact acute psychiatric care, with a focus on how EHR data is compiled and used to predict a risk of violence or aggression. Our objectives include: (1) evaluating an ML model trained on psychiatric EHRs to predict violent or aggressive incidents for intersectional bias; and (2) completing participant observation and qualitative interviews in an emergency psychiatric setting to explore how social, clinical and structural biases are encoded in the training data. Our overall aim is to study the impact of ML applications in acute psychiatry on marginalised and underserved patient groups. ETHICS AND DISSEMINATION: The project was approved by the research ethics board at The Centre for Addiction and Mental Health (053/2021). Study findings will be presented in peer-reviewed journals, conferences and shared with service users and providers.

COVID-19-related trauma and the need for organizational healing in a Dutch nursing home.

The nursing home sector was disproportionally affected by the COVID-19 pandemic and consequently, extreme mitigation strategies were taken in order to halt the spread of the virus. This research scrutinizes the manifestations of organizational trauma and healing amongst nursing home employees during the slow-burning pandemic. We aim to advance the contemporary debate around organizational healing that exclusively investigates fast-burning crises by translating these theories to a slow-burning crisis. Using participatory action research, we conducted two months of visual ethnographic fieldwork in a small-scale nursing home located in Amsterdam, the Netherlands from October to December 2021. Here, we present our findings constituting text and short videos according to the following four themes: (1) Emotional challenges in the workplace; (2) Cultural incompatibility of infection control strategies; (3) Navigating the ethics of decision-making; and (4) Organizational scars and healing perspectives. We propose the new concept of trauma distillation to describe and analyse how simmering organizational wounds are re-opened and purified to trigger a prolonged healing process in the context of slow-burning crises. Ultimately, this may lead to the acknowledgement and acceptance of such organizational wounds as multi-layered and intractable, aiming for a theoretical and empirical understanding of how to heal these. Our use of visual methods offers employees the opportunity to share their stories, make their suffering heard, and may contribute to nursing homes' processes of healing.

[Mental health of migrants under international legal texts and clinical practice: what is the role of culture?] / La santé mentale des migrants entre textes juridiques internationaux et pratique clinique: quelle place pour la culture?

This study examines the mental health of migrants under international legal texts and clinical practice. It highlights to what extent the right to mental health of migrants is guaranteed in international legal texts. It then relates this right to national practice in France. It determines practice guidelines addressing migrants' mental health. The purpose of this clinical study is to identify the adequacy of international legal texts to guarantee this right as an integral part of human rights. The individual in his or her singularity is at the heart of our work. However, a multidisciplinary approach will also address socio-cultural, anthropological and environmental factors. Indeed, steeped in clinical and social realities, we wonder how one can deny the cultural dimension of all human interactions and thus the basis of the helping relationship. We therefore understand that we need to broaden our conceptual and clinical/social framework through our awareness of clinical medical anthropology. Culture partly shapes the individual and his or her behaviour. It helps to make sense of the experiences that occur in each person's life and to prepare for what might happen.

Culture and pandemic control at cross-roads: navigating the burial guidelines for COVID-19-related deaths in a Ghanaian setting.

BACKGROUND: Despite the large volume of scientific evidence on the rapid spread of the COVID-19 pandemic and associated high morbidity and mortality, little is known about the sociocultural disruptions which ensued. The current study explored the nuanced navigation of the COVID-19-related death and burial protocols and its impact on traditional burial and funeral rites in Ghana. METHODS: This qualitative study was based on the 'focused' ethnographic design. Data were collected using key informant interviews from nineteen COVID-19-related bereaved family members and public health officials involved in enforcing adherence to COVID-19-related death and burial protocols in the Cape Coast Metropolis of Central region of Ghana. Recursive analysis was conducted to generate the themes and sub-themes from the data. RESULTS: The overarching theme was "Uncultural" connotations ascribed to the COVID-19-related death and burial protocols. The COVID-19-related death and burial protocols were ubiquitously deemed by participants to be 'uncultural' as they inhibited deep-rooted indigenous and eschatological rites of separation between the living and the dead. This was fueled by limited awareness and knowledge about the COVID-19 burial protocols, resulting in fierce resistance by bereaved family members who demanded that public health officials release the bodies of their deceased relatives. Such resistance in the midst of resource limitation led to negotiated compromises of the COVID-19-related death and burial protocols between family members and public health officials. CONCLUSIONS: Insensitivity to socio-cultural practices compromised the implementation of the COVID-19 pandemic control interventions, particularly, the COVID-19-related death and burial protocols. Some compromises that were not sanctioned by the protocols were reached to allow health officials and families respectfully bury their dead. These findings call for the need to prioritize the incorporation of sociocultural practices in future pandemic prevention and management strategies.

The Experiences of People Who Are Incarcerated in Accessing Mental Health Care: A Qualitative Meta-Ethnography.

OVERVIEW: This meta-ethnography synthesizes the findings of seven qualitative studies on the experiences of people who are incarcerated in accessing mental health care with a goal of better understanding the scope of these experiences and identifying gaps in custodial mental health care. Noblit and Hare's meta-ethnographic approach was used. FINDINGS: Five themes were identified: stressful incarceration environments, lack of resources, care is not patient centered, lack of trust, and the value of therapeutic relationships. Findings suggest that the custodial mental healthcare system may provide care that is misaligned with the needs of people who are accessing it. LIMITATIONS: Limitations of this meta-ethnography include the small number of studies identified for review, the diverse foci of the studies, the diversity of the custodial and mental health systems in the four countries from which the studies came, and the unaddressed mixing of jail and prison data in three of the studies. IMPLICATIONS: Future research should focus on obtaining additional perspectives from people who are accessing custodial mental healthcare services in jail and prison, exploring the differences between the experiences of people in jail versus prison, and identifying ways to develop and maintain high-quality therapeutic relationships between people who are incarcerated and custodial mental healthcare providers, including nurses who work in custodial facilities.

Breaking the silence on gendered harassment and assault of community health workers: an analysis of ethnographic studies.

INTRODUCTION: Across a variety of settings, women in tenuous financial circumstances are drawn to community health work as a way to advance themselves in the context of limited employment options. Female Community Health Workers (CHWs) are often preferred because they can more easily access mothers and children; at the same time, gender norms are at the heart of many of the challenges and inequities that these workers encounter. Here, we explore how these gender roles and a lack of formal worker protections leave CHWs vulnerable to violence and sexual harassment, common occurrences that are frequently downplayed or silenced. METHODS: We are a group of researchers who work on CHW programmes in a variety of contexts globally. The examples here are drawn from our ethnographic research (participant observation and in-depth interviews). RESULTS: CHW work creates job opportunities for women in contexts where such opportunities are extremely rare. These jobs can be a lifeline for women with few other options. Yet the threat of violence can be very real: women may face violence from the community, and some experience harassment from supervisors within health programmes. CONCLUSION: Taking gendered harassment and violence seriously in CHW programmes is critical for research and practice. Fulfilling CHWs' vision of health programmes that value them, support them and give them opportunities may be a way for CHW programmes to lead the way in gender-transformative labour practices.

A meta-ethnography investigating relational influences on mental health and cancer-related health care interventions for racially minoritised people in the UK.

OBJECTIVE: Despite calls to increase the 'cultural competence' of health care providers, racially minoritised people continue to experience a range of problems when it comes to health care, including discrimination. While relevant qualitative meta-syntheses have suggested better ways forward for health care for racialised minorities, many have lacked conceptual depth, and none have specifically investigated the relational dimensions involved in care. We set out to investigate the social and cultural influences on health care interventions, focusing on psychological approaches and/or cancer care to inform the trial of a new psychological therapy for those living with or beyond cancer. METHOD: A meta-ethnography approach was used to examine the relevant qualitative studies, following Noblit and Hare, and guided by patient involvement throughout. Papers were analysed between September 2018 and February 2023, with some interruptions caused by the Covid pandemic. The following databases were searched: Ovid MEDLINE, EBSCO CINAHL, Ovid Embase, EBSCO PsycINFO, Proquest Sociology Collection (including Applied Social Sciences Index & Abstracts (ASSIA), Sociological Abstracts and Sociology Database), EBSCO SocINDEX, Ovid AMED, and Web of Science. The systematic review protocol was registered with the International Prospective Register of Systematic Reviews (PROSPERO) (ID: CRD42018107695), and reporting follows the eMERGe Reporting Guidance for meta-ethnographies (France et al. 2019). RESULTS: Twenty-nine journal papers were included in the final review. Themes (third-order constructs) developed in the paper include the centrality of the patient-practitioner relationship; how participants give meaning to their illness in connection to others; how families (rather than individuals) may make health decisions; how links with a higher power and spiritual/religious others can play a role in coping; and the ways in which a hierarchy of help-seeking develops, frequently with the first port of call being the resources of oneself. Participants in studies had a need to avoid being 'othered' in their care, valuing practitioners that connected with them, and who were able to recognise them as whole and complex (sometimes described in relational languages like 'love'). Complex family-based health decision-making and/or the importance of relations with non-human interactants (e.g. God, spiritual beings) were frequently uncovered, not to mention the profoundly emergent nature of stigma, whereby families could be relatively safe havens for containing and dealing with health challenges. A conceptual framework of 'animated via (frequently hidden) affective relationality' emerged in the final synthesis, bringing all themes together, and drawing attention to the emergent nature of the salient issues facing minoritised patients in health care interactions. CONCLUSION: Our analysis is important because it sheds light on the hitherto buried relational forces animating and producing the specific issues facing racially minoritised patients, which study participants thought were largely overlooked, but to which professionals can readily relate (given the universal nature of human relations). Thus, training around the affective relationality of consultations could be a fruitful avenue to explore to improve care of diverse patients.

Supernatural explanations across 114 societies are more common for natural than social phenomena.

Humans across the globe use supernatural beliefs to explain the world around them. This article explores whether cultural groups invoke the supernatural more to explain natural phenomena (for example, storms, disease outbreaks) or social phenomena (for example, murder, warfare). Quantitative analysis of ethnographic text across 114 geographically and culturally diverse societies found that supernatural explanations are more prevalent for natural than for social phenomena, consistent with theories that ground the origin of religious belief in a human tendency to perceive intent and agency in the natural world. Despite the dominance of supernatural explanations of natural phenomena, supernatural explanations of social phenomena were especially prevalent in urbanized societies with more socially complex and anonymous groups. Our results show how people use supernatural beliefs as explanatory tools in non-industrial societies, and how these applications vary across small-scale communities versus large and urbanized groups.

The Metamorphosis. The impact of a young family member's problematic substance use on family life: a meta-ethnography.

PURPOSE: This meta-ethnography seeks to provide insight into the impact that a young family member's problematic substance use has on family life. BACKGROUND: Problematic substance use (PSU) usually emerges in adolescence or young adulthood. Living with a family member with PSU is highly stressful. An understanding is needed of families' experiences and their needs for adapted help and support, hence we have explored the impact of a young family member's PSU on family life. METHODS: Systematic literature searches for qualitative research that explores the impact of PSU on family life and family relationships were conducted and the seven stages of meta-ethnography were used. RESULTS: Fifteen articles were included. The Metamorphosis was established as an overarching metaphor. Five main themes accompany this metaphor: stranger in the family; injuring chaos; no trust any more; family lock-up; and helpless societies. CONCLUSION: The Metamorphosis reflects the all-embracing change experienced by families. Family members have felt powerless and helpless; often they wish to stay involved but do not know how. PSU at a young age can develop into lifelong chronic health challenges. Family-oriented help must be readily available in this phase as parents and siblings become deeply involved. Family involvement is seldom incorporated into routine treatment practices; such incorporation is therefore needed.

Disentangling the Link between Diverse Social Networks and Creativity: The Role of Personality Traits

Past studies have shown that being exposed to ethnocultural diversity can positively impact individual creativity. Yet, little is known about the interplay between situational (i.e., diversity) and dispositional (e.g., personality) factors in predicting creativity. Taking a person-situation approach, we use social network data to test the moderating role of personality in the relationship between having an ethnoculturally diverse network and creativity. Moreover, we investigate these questions in a diverse community sample of immigrants residing in the city of Barcelona (N = 122). Moderation analyses revealed that network diversity predicted higher levels of creativity in migrant individuals with medium to high levels of extraversion, and in those with low to medium levels of emotional stability. These results highlight the need to acknowledge the important role played by interacting individual-level dispositions and more objective meso-level contextual conditions in explaining one’s ability to think creatively, especially in samples that have traditionally been underrepresented in previous literature. (AU)

Ingresos psiquiátricos en un gran hospital de Madrid durante el confinamiento por COVID-19: ¿existió un cambio en el perfil de pacientes? / Psychiatric admissions in a large hospital in Madrid during covid-19 lockdown: was there a change in patient profile?

Introducción. El COVID-19 supuso en Madrid la reorganización de la asistencia sanitaria. El objetivo de este estudio es describir el perfil sociodemográfico y clínico en los pacientes psiquiátricos que ingresaron en el Hospital Gregorio Marañón durante el confinamiento. Material y métodos. Se realizó un estudio trasversal retrospectivo en el que se recogieron datos de todos los ingresos en nuestra unidad de hospitalización psiquiatría del 15 de marzo al30 de mayo de los años 2019 y 2020. Se elaboró un protocolo que incluía variables clínicas y sociodemográficas, junto a una serie de variables referidas al año previo al ingreso. Además de estadísticos descriptivos, utilizamos la t de Student para comparar variables cuantitativas y χ² para las cualitativas. Resultados. En 2020 la población atendida aumento un312,5%, mientras los ingresos subieron únicamente un 2,5%.El nivel socioeconómico fue significativamente más bajo en 2020 (χ²=18,041; p=0,001). El número de hospitalizaciones previas era significativamente mayor en los pacientes de 2019 (t=2.147; p=0.032), pero las variables que medían únicamente el año previo registraban más tiempo de psicopatología (χ²=7,407; p=0,025) y de hospitalización(χ²=16,765; p=0,000) en 2020, así como relaciones familiares más disfuncionales (χ²=33,819; p=0,000) y menor autonomía(χ²=6,387; p=0,041). La duración del ingreso índice fue significativamente menor en 2020 (t=2.977; p=0.003). Existían también diferencias significativas en el motivo del ingreso, el diagnóstico y el consumo de sustancias. Conclusiones. Observamos una disminución de la asistencia a los servicios de urgencia y de la necesidad de ingreso hospitalario y un aumento en la proporción de ingresos en personas con contexto socio-familiar desfavorable y con trastornos psicóticos y bipolares. (AU)

Introduction. COVID-19 led to a reorganization of healthcare in Madrid. The objective of this study is to describe thesociodemographic and clinical profile of psychiatric patients admitted to Gregorio Marañón Hospital during lockdown. Methods. A retrospective cross-sectional study was conducted and data were collected from all admissions to ourpsychiatric unit from March 15 to May 30, 2019 and 2020. Aprotocol was developed including clinical and sociodemographic variables and a series of variables referring to theyear prior to admission. In addition to descriptive statistics,we used Student’s t test to compare quantitative variables and χ² for qualitative variables. Results. In 2020, the attended population increased by312.5%, while admissions increased only 2.5%.Socioeconomic status was significantly lower in 2020 (χ²=18.041; p=0.001). The number of previous hospitalizations was significantly higher in 2019patients (t=2,147; p=0.032), but the variables that measured only the previous year reflected more time of psychopathology (χ²=7.407; p=0.025) and hospitalization (χ²=16,765; p = 0.000) in 2020, as well as more dysfunctional family relationships (χ²=33.819; p=0.000) and less autonomy (χ²=6.387; p=0.041). The index admission was significantly shorter in 2020 (t=2.977; p=0.003). There were also significant differences in the reason for admission, diagnosis, and substance use. Conclusions. There was a decrease in attendance to emergency services and the need for hospital admissions and an increase in the proportion of admissions in people with an unfavorable social and family background and with psychotic and bipolar disorders.

'Just because something works doesn't mean it can't be improved': an ethnographic analysis of the health system in Black Panther's Wakanda.

The emergence of COVID-19 (SARS-CoV-2) has introduced significant global challenges for healthcare systems, healthcare professionals and patients. This current climate creates an opportunity to learn from equitable health systems and move toward making fundamental changes to healthcare systems. Our ethnographic analysis of Wakanda's healthcare system in Black Panther, from the Marvel Cinematic Universe, offers opportunities for system-level transformation across healthcare settings. We propose four healthcare system themes within the context of Wakandan identity: (1) technology as an instrument (blending bodies and technology, blending technology with tradition); (2) reimagining medication; (3) warfare and rehabilitation; and (4) preventative approaches to health (prioritising collective health, deprofessionalisation of healthcare services). The preceding themes represent core elements of Wakandan health systems that allow the people of Wakanda to thrive. Wakandans retain a strong identity and cultural traditions while embracing modern technologies. We found that effective upstream approaches to health for all are embedded in anti-colonial philosophies. Wakandans embrace innovation, embedding biomedical engineering and continuous improvement into care settings. For global health systems under strain, Wakanda's health system identifies equitable possibilities for system change, reminding us that culturally relevant prevention strategies can both decrease pressure on health services and allow all people to thrive.

Unfolding alignment - How top management work to align demand and capacity: an ethnographic study of resilience in a Swedish healthcare region.

BACKGROUND: Resilient healthcare organizations maintain critical functions and high-quality care under varying conditions. While previous research has focused on the activities of frontline healthcare professionals working at the "sharp end" of care, less attention has been paid to managers at the top management level. More knowledge is needed to fully understand how the managers align demand and capacity at the "blunt end" of care. Therefore, this study aimed to explore how top managers work to align demand and capacity in a healthcare region in Sweden. METHODS: Observations of management team meetings, interviews, and conversations were conducted with top managers responsible for healthcare in one of Sweden's 21 regions. Data collection used an ethnographic approach. Data were analyzed using qualitative reflexive thematic analysis. RESULTS: The data showed how alignment work was done through active reflection that built on past experiences and on structures built into the organization at the same time as taking future potential outcomes and consequences into account. In addition to collaborative, preventive, supportive, and contextualizing work, which was conducted in the present, a general approach permeated the organization, which enabled connecting actions, i.e., different forms of alignment work, occurring at different points in time, and connecting different types of knowledge across organizational borders and stakeholders. CONCLUSION: This study explored how top managers work to align demand and capacity in a healthcare region in Sweden. It was shown how four categories of work; collaborative, preventive, supportive and contextualization work, together with a general approach; focusing on opportunities, building on a stable past and taking a reflective stance, constitute alignment in practice. More; the alignment work was done in the here and now, with both the past and future in mind. The ability to take action to benefit the whole is a possibility and a responsibility for top management. In the region studied, this was done by aligning demands with capacity based on past experiences and focusing on the available opportunities to connect knowledge needed within and across organizational borders.

A systematic review and meta-ethnography to explore people's experiences of psychotherapy for self-harm.

BACKGROUND: Self-harm is a major public health concern. Lifetime prevalence is high, and rates of self-harm are rising; however, available interventions do not benefit everyone, and engagement with therapy can be low. Qualitative accounts allow for a greater understanding of what is helpful to individuals. This study aimed to synthesize the experiences of interventions for self-harm, from participants who have participated in these themselves. METHODS: Participants had self-harmed at least once and undergone an individual psychotherapeutic intervention for self-harm. Papers not written or translated to the English language were excluded. Four databases (Medline, CINAHL, Web of Science and PsycINFO) were systematically searched and each paper was assessed using the CASP quality appraisal tool. A meta-ethnographic approach to the synthesis was taken. RESULTS: Ten studies encompassing 104 participants were included. Four overarching themes were developed and the importance of recognizing the person beyond the self-harm emerged through a line of argument synthesis. Building a trusted, therapeutic relationship founded on patience and without judgement was essential for the perceived success of therapy, which was unique to each person and often went beyond reducing self-harming behaviours. LIMITATIONS: Papers included in the study showed a lack of diversity with regard to ethnicity and gender. CONCLUSIONS: The findings illustrate the importance of the therapeutic alliance when working with self-harm. Clinical implications of this paper include the importance of utilizing key therapeutic competencies which should be considered fundamental to change within psychotherapeutic interventions for self-harm, with the uniqueness of each patient recognized throughout.

Challenges of Shared Decision-making by Clinicians and Patients With Low-risk Differentiated Thyroid Cancer: A Systematic Review and Meta-Ethnography.

Importance: Several international guidelines have endorsed more conservative treatment of low-risk differentiated thyroid cancer (LRDTC), yet patients are facing more treatment options with similar oncologic outcomes and are expressing feelings of confusion, dissatisfaction, and anxiety. Shared decision-making, which considers the patient's values and preferences along with the most reliable medical evidence, has been proposed to optimize patient satisfaction in the context of the current clinical equipoise. Objectives: To understand key individual and behavioral factors affecting the patient and clinician decision-making process in treatment decision for LRDTC. Evidence Review: This systematic review and meta-ethnography involved a comprehensive literature search of MEDLINE, Embase, PubMed, and CINAHL databases for qualitative and mixed-method studies on patient and clinician experiences with the decision-making process for LRDTC treatment. The quality of the studies was assessed using the Mixed Methods Appraisal Tool; meta-ethnography was used for data analysis. Primary and secondary themes of the included studies were extracted, compared, and translated across articles to produce a lines-of-argument synthesis. Findings: Of 1081 publications identified, 12 articles met the inclusion criteria. The qualitative synthesis produced 4 themes: (1) a bimodal distribution of patient preferences for treatment decisions; (2) clinician anxiety affected equipoise and biased their recommendations; (3) clinicians struggled to identify patient concerns and preferences; and (4) the clinician-patient relationship and psychosocial support were key to shared decision-making but were frequently overlooked. Conclusions and Relevance: The findings of this systematic review and meta-ethnography emphasize the need for better patient-clinician communication, particularly with respect to eliciting patient concerns and preferences. With an ever-increasing pool of thyroid cancer survivors, future efforts should be directed at establishing and evaluating tools that will aid in shared decision-making for treatment of patients with LRDTC. Trial Registration: PROSPERO Identifier: CRD42022286395.

Regulating the disenfranchised: Reciprocity & resistance under the Mental Capacity Act.

This paper interrogates the legitimacy of formal ethical regulation regarding people with dementia under the Mental Capacity Act, 2005 in England and Wales. Under the Act, research among people diagnosed with dementia must be approved by Health Research Authority committees, irrespective of whether that research engages with health organisations or service users. As examples, I discuss two ethnographic dementia studies that do not engage with healthcare services, but which nonetheless require HRA approval. These instances raise questions regarding legitimacy and reciprocity in the governance of dementia. Through capacity legislation, the state exerts control over people with dementia, automatically delineating them as healthcare subjects because of their diagnoses. This diagnosis functions as a form of administrative medicalisation, rendering dementia a medical entity and those diagnosed with it the property of formal healthcare. However, many people with dementia in England and Wales do not receive related health or care services beyond diagnosis. This institutional imbalance of high governance and low support undermines the contractual citizenship of people with dementia, wherein state-citizen rights and responsibilities should be reciprocal. In response, I consider resistance to this system in ethnographic research. "Resistance" here is not necessarily deliberate, hostile, difficult or perceived, but rather encompasses micropolitical effects that are contrary to power or control, sometimes emerging from systems themselves rather than individual resistive actors. Resistance can be unintentional, through mundane failures to satisfy specific aspects of governance bureaucracies. It can also be deliberate, through refusals to comply with restrictions that seem cumbersome, inapplicable or unethical, potentially raising questions of malpractice and misconduct. I suggest that resistance is made more probable due to the expansion of governance bureaucracies. On the one hand, the potential for both unintentional and intentional transgression increases, while on the other hand, the capacity for those transgressions to be discovered and rectified decreases, because the maintenance of control over such a system requires vast resources. Behind this ethico-bureaucratic tumult, people with dementia themselves are largely invisible. People with dementia often have no interaction with committees that determine their research participation. This further renders ethical governance a particularly disenfranchising facet of the dementia research economy. The state stipulates that people with dementia must be treated differently because of their diagnoses, without consulting those people. In response, resistance to unethical governance could be intuitively deemed ethical per se, but I suggest that such a simplistic binary is somewhat misleading.

Ethics and the impossibility of the consent form: Ethnography in a Danish nursing home.

Based on ethnographic fieldwork in a nursing home in northern Denmark, this article addresses challenges experienced in putting formal ethics requirements into practice. We consider how to unite procedural ethics with actual, lived ethics, when researching with vulnerable participants who live with a cognitively impairing condition. The article centers on the story of one resident, who wanted to share her experiences with what she had perceived as inadequate care, but who baulked once the wordy consent form was produced. The resident panicked that her words could now be used against her, that talking with the researcher would (further) compromise her care. She was caught in a bind, on the one hand she had a deep desire to tell her story, on the other the piece of paper in her hand threatened to trigger her anxiety and depression. In this article we therefore approach the consent form as an agent. By mapping out these unintended consequences of the consent form, we wish to draw attention to the complexities of ethical research conduct in practice, ultimately arguing that the concept of appropriate informed consent should be broadened so that it is sensitive to the lifeworld of participants.

Using ethnographic approaches to document, evaluate, and facilitate virtual community-engaged implementation research.

BACKGROUND: Community Advisory Boards (CABs) have been frequently used to engage diverse partners to inform research projects. Yet, evaluating the quality of engagement has not been routine. We describe a multi-method ethnographic approach documenting and assessing partner engagement in two "virtual" CABs, for which we conducted all meetings remotely. METHODS: Two research projects for increasing equitable COVID-19 testing, vaccination, and clinical trial participation for underserved communities involved remote CAB meetings. Thirty-three partners representing 17 community groups participated in 15 sessions across the two CABs facilitated by a social change organization. We developed ethnographic documentation forms to assess multiple aspects of CAB member engagement (e.g., time spent speaking, modality used, types of interactions). Documenters were trained to observe CAB sub-groups via virtual sessions. Debriefing with the documentation team after CAB meetings supported quality assurance and process refinement. CAB members completed a brief validated survey after each meeting to assess the quality and frequency of engagement. Content and rapid thematic analysis were used to analyze documentation data. Quantitative data were summarized as frequencies and means. Qualitative and quantitative findings were triangulated. RESULTS: A total of 4,540 interactions were identified across 15 meetings. The most frequent interaction was providing information (44%), followed by responding (37-38%). The quality and frequency of stakeholder engagement were rated favorably (average 4.7 of 5). Most CAB members (96%) reported good/excellent engagement. Specific comments included appreciation for the diversity of perspectives represented by the CAB members and suggestions for improved live interpretation. Debriefing sessions led to several methodological refinements for the documentation process and forms. CONCLUSION: We highlight key strategies for documenting and assessing community engagement. Our methods allowed for rich ethnographic data collection that refined our work with community partners. We recommend ongoing trainings, including debriefing sessions and routinely reviewed assessment of data to strengthen meaningful community engagement.