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In the United Kingdom, people with non-white ethnicities are more likely to report being in worse health conditions and have poorer experiences of healthcare services than white counterparts. The voices of those of Black ethnicities are often merged in literature among other non-white ethnicities. This literature review aims to analyse studies that investigate Black participant experiences of primary care in the UK. We conducted a systematic literature review searching Medline, Web of Science, EMBASE, SCOPUS, Social Policy and Practice, CINAHL plus, Psych INFO and Global Health with specific search terms for appropriate studies. No publish date limit was applied. 40 papers (39 articles and 1 thesis) were deemed eligible for inclusion in the review. A number of major themes emerged. Patient expectations of healthcare and the health seeking behaviour impacted their interactions with health systems in the UK. Both language and finances emerged as barriers through which some Black participants interacted with primary care services. (Mis)trust of clinicians and the health system was a common theme that often negatively impacted views of UK primary care services. The social context of the primary care service and instances of a cultural disconnect also impacted views of primary care services. Some papers detail patients recognising differential treatment based on ethnicity. The review included the voices of primary care professionals where descriptions of Black patients were overwhelmingly negative. Views and experiences of Black groups may be radically different to other ethnic minorities and thus, should be teased out of broader umbrella terms like Black and Asian Minority Ethnic (BAME) and Black Minority Ethnic (BME). To address ethnicity-based health inequalities, culturally sensitive interventions that engage with the impacted community including co-designed interventions should be considered while acknowledging the implications of being racialised as Black in the UK. [ABSTRACT FROM AUTHOR]

Resilience is an important attribute of incident management teams (IMTs) for managing disasters. Previous research on resilience of IMTs has focused on comparing work-as-imagined (WAI) and work-as-done (WAD) but predominantly used narrative analyses which limited comparisons between IMTs. This paper presents a novel Interaction Episode Analysis (IEA) method to identify the IMT's WAI and WAD episodes by analyzing dynamic interactions that occur between different roles that carry out information management tasks. Observations and audio--visual recordings of two high-fidelity IMT exercises were conducted to capture WAD episodes, and semi-structured interviews with experts elicited corresponding WAI episodes. Quantitative analyses using five interaction-based measures were conducted to detect differences of the WAD episodes between two IMTs. Next, qualitative analyses were focused on identifying reasons why such differences have occurred by comparing the gaps between WAI and WAD episodes. Some of the reasons for WAI-WAD gaps included the non-occurrence of critical interactions that were expected and occurrence of unexpected interactions between IMT members. This paper also identifies cases of preparatory, proactive, and reactive performance adjustment that characterizes IMT resilience. The IEA method shows promise for investigating how and why the gaps between WAI and WAD in IMTs occur. With the identification of these gaps, future research can be conducted to reconcile the gaps between WAI and WAD episodes, and thus enhance resilience of IMTs in future disasters. [ABSTRACT FROM AUTHOR]

Acquiring information about one's child's cancer diagnosis is a complex and ever-changing process, and parents' needs change over time. As yet, we know little about what information parents require at different stages of their child's illness. This paper is part of a larger randomized control trial studying the parent-centered information given to mothers and fathers. The aim of this paper was to describe the topics addressed in person-centered meetings between nurses and parents of children with cancer and how those changed over time. Using qualitative content analysis, we analyzed nurses' written summaries of 56 meetings with 16 parents and then computed for each topic the percentage of parents who brought it up at any time during the intervention. The main categories were Child's disease and treatment (addressed by 100% of parents), Consequences of treatment (88%), Emotional management for the child (75%), Emotional management for the parent (100%), Social life of the child (63%), and Social life of the parent (100%). Different topics were addressed at different points in time, and fathers raised more concerns about the child's emotional management and the consequences of treatment than mothers. This paper suggests that parental information demands change over time and differ between fathers and mothers, implying that information should be person-centered. Registered at Clinicaltrials.gov (NCT02332226). [ABSTRACT FROM AUTHOR]

This paper explores how neoliberal ideologies inform both social and political agendas that influence how social workers can provide support to trans and gender diverse people attempting to access gender-affirming healthcare, using an analysis of social workers' experiences working in mental health in Nova Scotia, Canada. Qualitative semi-structured interviews provide a perspective of the experiences of social workers in Nova Scotia and how their ability to provide mental health services to trans and gender diverse people is impacted by neoliberalism. Most social workers attributed the structural context of working within a bio-medical system as contributing to social workers being disempowered, undermined, and not able to practice according to the values of their profession thus limiting their ability to provide affirming mental health supports to trans and gender diverse people in ways that align with their social work professional ethics and values. Through examining how neoliberal ideologies create notions of ideal social citizens by controlling the body, the paper explores how lived experience of neoliberal practices in mental health social work reinforce transnormativity. This paper highlights the necessity for social workers to resist dominant neoliberal and medicalized discourses which serve as mechanisms of power and control. The paper concludes with recommendations for social work practice with trans and gender diverse populations. [ABSTRACT FROM AUTHOR]

This paper presents a review of the existing qualitative research literature concerning people's experience of communicating using augmentative and alternative communication (AAC). The aims of conducting this review were to find out more about the values and outcomes that are important to people about the AAC they use to support their communication. This review was conducted to provide a deeper understanding of these experiences to inform the development of a patient-reported outcome measure (PROM). A qualitative evidence synthesis of existing qualitative research literature was undertaken to explore and appraise current knowledge about the experiences of people who use AAC. From 115 qualitative research reports 19 papers were identified that responded directly to the research question and aims of the review. Data were identified that could be organized within an a priori framework consisting of the constructs of values, outcomes, and context. The review has resulted in a deeper, analytical understanding of the experiences of people who require AAC. The results indicate a set of concepts that can be used to inform the development of a PROM. A PROM can be used to assist clinicians and researchers to better understand the perspectives of people who require AAC and evaluate interventions. The results also encourage professionals to reconsider the terminology and methods used when working alongside people who require AAC and to reflect on the multidimensional factors that influence people's experience of communication. Patient-reported outcome measures (PROMs) can be useful tools to support clinician-patient communication, facilitate shared decision making and establish priorities for rehabilitation. It can be difficult to engage people who have complex communication difficulties in decisions about the important outcomes to them from using augmentative and alternative communication (AAC). This qualitative evidence synthesis provides a deeper understanding of the experiences and perspectives of people who use AAC. The results will be used to inform the development of a PROM which can be used to facilitate shared decision-making, and evaluate AAC interventions from the perspective of the people who use these technologies. [ABSTRACT FROM AUTHOR]

This article traces the origin, sustenance and implications of a persistent rumour that is responsible for low measles mumps and rubella (MMR) vaccination uptake in the Somali diaspora in a number of countries across the globe. The rumour stipulates that the MMR vaccine – the silent shot – causes autism spectrum disorder (ASD). Although the association between MMR and ASD is non-causal, and various public health initiatives have promoted health information campaigns, the rumour continues to circulate in the Somali diaspora in many countries, including Sweden. This paper shows that there are valid reasons for this. The findings from this paper draw on a systematic scoping review and qualitative interview data from Sweden. The results show that the Somali community experiences higher than average rates of ASD compared to the general population. Moreover, ASD does not exist in the Somali language or their home country, is considered a Western disease that only affects Somali children in the diaspora, and is a highly stigmatised disease. Also, the Somali diaspora has had negative experiences with ASD diagnosis and care. The rumour has been sustained by the absence of an answer to their ASD fear and through active diaspora networks on social media. The network that surrounds the rumour has arguably further helped to create an epistemic community for a community whose concerns have been silenced. [ABSTRACT FROM AUTHOR]

This paper utilises empirical data to explore the value of 'body work' performed by last responders charged with the duty of dead body management, with a focus on the Global South. While frontline staff work to save lives, little is known about the experiences and roles of those who care for the dead in global health in times of crises and even during normal times. This paper discusses ethical and socio-cultural challenges pathologists face in 'working on the bodies of others' while conducting any form of post-mortem procedures – necessary for ascertaining and recording the causes of death. Identifying and reporting the cause of death have significant public health benefits and provide closure for bereaved families. Despite the foregoing, the pathology field does not attract funding from governments or donors, and it is overlooked compared to other disciplines. Autopsy procedure bears social stigma – as it is associated with body mutilation and therefore disrespecting the dead; certain cultural beliefs or taboos about impurity and death persist, further raising some social and ethical tensions. As a result, the dearth of autopsy procedures contributes to the cause of death uncertainty in global health. [ABSTRACT FROM AUTHOR]

Background: Drug overdose deaths in Texas have been accelerating in recent years with an increase of 33% in the 12 months leading up to December 2020. Accurate counts of nonfatal overdoses – including associated aspects of overdose, such as substances involved, demographic information, and reversal agents administered is critical to increase timely and adequate response to individuals and communities in need. Methods: Twenty semi-structured interviews were conducted with harm reduction workers across four Texas counties to understand existing methods of reporting overdoses, naloxone dissemination/administration, and recommendations for improving overdose surveillance. Interviews were transcribed and emergent themes were identified based on the a priori research goals. Results: Findings highlighted a variety of overdose data collection methods and tools among harm reduction organizations including Excel spreadsheet, web-based TONI application, notes on personal cell phones, and paper notes. Types of overdose data collected varied widely. Participants noted existing methods are suboptimal and that there is a need for a unified, statewide reporting system to improve overdose data capture. Participants also highlighted that overdose surveillance should include "hidden populations" of people who use drugs that are not currently counted in surveillance methods as a result of not interacting with the healthcare system. Conclusions: Texas lacks a unified overdose reporting system to capture critical data to inform overdose response and prevention efforts. Nontraditional reporters may be critical toward improving overdose syndromic efforts and capturing data among hard-to-reach populations. Harm reduction organizations are uniquely positioned to facilitate reporting among community gatekeepers and people who use drugs. [ABSTRACT FROM AUTHOR]

This paper reports on a study (commissioned by central government) of a specialist social work service provided by local government agencies (local authorities) in Ireland. The service originated in the 1960s, was designed to meet the accommodation related needs of Travellers, an indigenous, Irish, ethnic group, who have faced centuries of social exclusion and discrimination. The paper begins with an account of the economic and social problems faced by Travellers and then the few available Irish and UK publications. It then reports on qualitative findings drawn from interviews with social workers, Travellers and other key stakeholders. The idiom 'betwixt and between' is used to characterise the social work role. Respondents aspired to forms of social action and advocacy roles but were sometimes viewed with suspicion by Traveller activists. Local authority structures were overly focused on non-social work functions where social work expertise was rarely acknowledged or utilised. This partly explains why social workers faced challenges in upholding their professional values, regulatory obligations and continuous professional development. The authors conclude by arguing for a more clearly defined, human-rights based social work role, referencing lessons that can be drawn from the wider European literature. [ABSTRACT FROM AUTHOR]

This paper synthesises critique from Māori patients with Bipolar Disorder (BD) and their whānau to identify barriers and propose changes to improve the structure and function of the New Zealand mental health system. A qualitative Kaupapa Māori Research methodology was used. Twenty-four semi-structured interviews were completed with Māori patients with BD and members of their whānau. Structural, descriptive and pattern coding was completed using an adapted cultural competence framework to organise and analyse the data. Three key themes identified the impact of structural features of the New Zealand mental health system on health equity for Māori with BD. Themes involved the accessibility, delivery and scope of the current health system, and described how structural features influenced the quality, utility and availability of BD services for Māori patients and whānau. Structural barriers in the existing design, and potential changes to improve the accessibility, delivery and scope of BD services for Māori, were proposed including a redesign of operational, environmental, staffing, and navigation points (information, transition, fatigue) to better meet the needs of Māori with BD. A commitment to equity when implementing structural change is needed, including ongoing evaluation and refinement. This paper provides specific recommendations that should be considered in health service redesign to ensure the New Zealand mental health system meets the needs of Māori patients with BD and their whānau. [ABSTRACT FROM AUTHOR]

Peer observation of teaching has for long been defended as a valuable device of professional and institutional development in higher education, but is almost unexplored at primary- and secondary-level schools. This paper introduces a model for multidisciplinary peer observation of teaching that has been developed and implemented in a professional development programme in two Portuguese school clusters of basic and secondary education in collaboration with its teachers. After four years of developing the programme in these school clusters, a case study was conducted through a qualitative analysis of observation guides completed throughout the years (N = 563) to identify perceived effects of participating in the programme for both teacher professional development and reflective practices. The programme emerged as a powerful initiative to foster teacher collaboration, innovation, and reflection for improving practices. Implications related to current national curriculum and educational policies are discussed. [ABSTRACT FROM AUTHOR]

The COVID-19 pandemic has disrupted societies globally. Public health institutions were tasked with responding to the pandemic in a dynamic and uncertain context. This paper sheds light on the experiences of COVID-19 response actors as they navigated multi-dimensional crises associated with the pandemic in general and vaccine hesitancy in particular. This research was conducted during the initial phase of the COVID-19 vaccine rollout in Flanders, Belgium. Participants included informants across all levels of the COVID-19 vaccination strategy including but not limited to those producing scientific knowledge, providing policy input, or implementing public health directives locally. 'Crisis' was identified as a recurring theme in interviews with informants. The paper highlights multi-dimensional crises experienced by informants such as the: (i) crisis of prioritization, (ii) crisis of communication, (iii) crisis of the changing image of science, (iv) crisis of epistemic agency and autonomy, and (v) crisis of trust. [ABSTRACT FROM AUTHOR]

Purpose: This research examines the implementation of the Icelandic Prevention Model (IPM) in Canada to identify opportunities revealed by the COVID-19 pandemic to re-design our social eco-system to promote wellbeing. This paper has two objectives: 1) to provide a conceptual review of research that applies the bioecological model to youth substance use prevention with a focus on the concepts of time and physical space use and 2) to describe a case study that examines the implementation of the IPM in Canada within the context of the COVID-19 pandemic. Method: Study data were collected through semistructured qualitative interviews with key stakeholders involved in implementing the IPM. Results: Findings are organized within three over-arching themes derived from a thematic analysis: 1) Issues that influence time and space use patterns and youth substance use, 2) Family and community cohesion and influences on developmental context and time use and 3) Opportunities presented by the pandemic that can promote youth wellbeing. Conclusion: We apply the findings to research on the IPM as well as the pandemic to examine opportunities that may support primary prevention and overall youth wellbeing. We use the concepts of time and space as a foundation to discuss implications for policy and practice going forward. [ABSTRACT FROM AUTHOR]

Good quality data are a key to quality health care. In 2017, WHO has launched the Quality of Care Network (QCN) to reduce maternal, newborn and stillbirth mortality via learning and sharing networks. Guided by the principle of equity and dignity, the network members agreed to implement the programme in 2017–2021. This paper seeks to explore how QCN has contributed to improving data quality and to identify factors influencing quality of data in Ethiopia. We conducted a qualitative study in selected QCN facilities in Ethiopia using key informant interview and observation methods. We interviewed 40 people at national, sub-national and facility levels. Non-participant observations were carried out in four purposively selected health facilities; we accessed monthly reports from 41 QCN learning facilities. A codebook was prepared following a deductive and inductive analytical approach, coded using Nvivo 12 and thematically analysed. There was a general perception that QCN had improved health data documentation and use in the learning facilities, achieved through coaching, learning and building from pre-existing initiatives. QCN also enhanced the data elements available by introducing a broader set of quality indicators. However, the perception of poor data quality persisted. Factors negatively affecting data quality included a lack of integration of QCN data within routine health system activities, the perception that QCN was a pilot, plus a lack of inclusive engagement at different levels. Both individual and system capabilities needed to be strengthened. There is evidence of QCN's contribution to improving data awareness. But a lack of inclusive engagement of actors, alignment and limited skill for data collection and analysis continued to affect data quality and use. In the absence of new resources, integration of new data activities within existing routine health information systems emerged as the most important potential action for positive change. [ABSTRACT FROM AUTHOR]

In some countries, far-reaching 'lockdown' measures to contain the spread of coronavirus were implemented early in 2020. In Austria, these early measures were met with a high degree of compliance among the country's population. In this paper, we draw upon qualitative interviews, and ask how people made sense of the restrictions imposed during the first lockdown in April 2020 and what shaped their compliance. Empirical research has so far tried to explain compliance by means of people's disposition and motivations as well as demographic and social characteristics. Instead of focussing on who is compliant, we aim to understand how people practice compliance. We do this by approaching compliance through the concepts of values and practice. First, our findings indicate that people assess whether measures are suitable and legitimate in relation to the values of science, the law, and morality. Second, people assign additional personal value to compliance by stressing its positive implications on their own lives. By adopting a nuanced perspective on compliance as inextricably linked to peoples' values and practices, our paper critically contributes to the political and scholarly discussion of pandemic public health measures. Understanding compliance through the lens of values shows how people make sense of the measures in the context of their everyday lives, helping us to move away from a binary understanding of (non-)compliance that has become morally charged. [ABSTRACT FROM AUTHOR]

Managing cultural diversity remains a challenge in secondary schools in Spain. In this paper, we approach cultural diversity from the standpoint of school counsellors, who are key professionals attending to immigrant pupils. Through the use of qualitative research techniques (semi-structured interviews and discussion groups), the strengths, weaknesses, opportunities, and threats are identified by counsellors. The findings show the need to implement pupil-focused responses sensitive to their cultural identity and based on the collaboration of all agents involved. Likewise, the school is defined as a privileged setting in which to celebrate cultural diversity and the pivotal role that counsellors play in this process is highlighted. [ABSTRACT FROM AUTHOR]

This paper reports findings from a qualitative study conducted on the Need for Social work interventions in the Emergency Department (ED) at a large tertiary care center in India. The emergency department is an important social work intervention point for individuals with various psychiatric, medical, and social needs who have little or no additional interaction with social services. Social workers are specially trained to understand the impact of social factors on health outcomes and provide interventions that address social barriers to improving health and accessing community resources; social workers are well prepared to provide services in the emergency department. However, limited research is available to understand the impact of psychosocial services in the emergency department. We aimed to identify areas which require integrated social work services and coordination to address the psychosocial issues within the ED. Interviews with 10 healthcare workers are analyzed thematically. Recurring themes throughout the interviews confirm the need for providing social work interventions to ensure the medical, psychological, and social care needs in the emergency department. [ABSTRACT FROM AUTHOR]

Assistive technologies have allowed people with disabilities to perform daily tasks with greater independence and autonomy, especially for visually impaired people. Using smart home solutions allows these users to control their homes with less cognitive and physical demand. However, making such applications accessible to meet the needs of visually impaired users, especially in developing countries, remains a challenge. This paper investigates the perceptions of these users about home automation technologies through semi-structured interviews. A total of 20 visually impaired people participated in the interviews. A thematic analysis revealed results concerning the following themes: (1) how people go about their lives at home and around, how people interact with current appliances, objects and environments, (3) how people perceive their attitude to technologies, (4) the Brazilian context of smart homes, (5) what people think smart homes should do and (6) envisaging ways of interacting with smart home systems. The results obtained provide significant insight into the needs of visually-impaired people in Brazil, with analysis of issues that are common with previous studies in more developed countries and specific issues that have important particularities and implications in Brazil and other developing countries. [ABSTRACT FROM AUTHOR]

In July 2019, Ebola in the Democratic Republic of Congo (DRC) was declared a public health emergency of international concern and neighbouring countries were put on high alert. This paper examines the intersections of gender, caregiving, and livelihood practices in Uganda's border districts that emerged as key factors to consider in preparedness and response. This paper is based on an anthropological study of the Ebola context among Bantu cultures. We report on data from focus group discussions and key informant interviews with various sectors of the community. The study identified intersecting themes reported here: (1) women as primary caregivers in this context; and (2) women as providers, often in occupations that increase vulnerability to Ebola. Findings demonstrate the role that women play inside and outside the home as caregivers of the sick and during burials, and intersections with livelihood-seeking strategies. Because women's caregiving is largely unpaid, women face a double burden of work as they seek other livelihood strategies that sometimes increase vulnerability to Ebola. Epidemic response should address these intersections and the context-specific vulnerabilities of caregivers; it should also be localised and community-centred and able to attend to the cultural as well as the economic needs of a community. [ABSTRACT FROM AUTHOR]

This study sheds light on how to develop inclusive pedagogy in higher education, from the point of view of 42 inclusive faculty members from 6 Spanish universities. A qualitative methodology was used through semi-structured in-depth interviews. Data analysis was inductive, using a system of categories and topics. The results reveal that the faculty members which develop inclusive pedagogy in general have beliefs linked to the social model of disability and inclusive education approaches. They do not usually have specific training or knowledge about disability. They design their curricula in a flexible and open way to accommodate all students. They show a positive attitude toward students with disabilities and use diverse and participatory teaching methodologies, giving prominence to students. These data are consistent with those found in previous studies and offer keys to those faculty members who are interested in developing an inclusive pedagogy at the university. This paper examines in detail how faculty members of six faculties of educational sciences develop a theoretical framework comprising beliefs, knowledge, designs and actions. The research has found that faculty members hold beliefs about disability based on the social model of disability and inclusive approach. In general, inclusive faculty members' knowledge of disability and attention to diversity issues is scarce. The design of courses and teaching programmes led by inclusive university faculty is characterised by being open, flexible and providing clear and detailed information to students. Faculty who develop inclusive pedagogy use varied, participative and active methodologies, which are combined with a positive and approachable attitude towards students with disabilities. [ABSTRACT FROM AUTHOR]

Persuasive gamified systems are effective tools for motivating behaviour change using various persuasive strategies. In line with the reinforcement theory, some persuasive gamified systems employ reward and punishment in their design to achieve the intended behavioural outcome. Research has argued both in favour and against using these strategies in behaviour change applications due to mixed results with respect to their effectiveness. However, there is a lack knowledge about how interventions using these strategies could motivate or demotivate behaviours. Therefore, this paper explores the mechanism through which Reward and Punishment motivate or demotivate behaviours with respect to their strengths and weaknesses. The results of large-scale exploratory studies (N = 1768) uncover important strengths and weaknesses that could facilitate or hinder the effectiveness of Reward and Punishment at motivating behaviour change. These include their ability to engage users and make behaviour fun, reinforce commitments to goals, and reveal some consequences of bad behaviour. We also compared the perceived effectiveness of reward and punishment quantitatively. [ABSTRACT FROM AUTHOR]

This paper explores the perception of "relatives" during the rehabilitation of young adults with severe acquired brain injury (SABI). This longitudinal qualitative study followed eight young adults with a SABI from hospital discharge to a year and a half after discharge. The design encompassed professional records, interviews, and surveys, including a name generator list completed by the young adults and focus group interviews with both their families and professionals. We apply a sociological theoretical framework concerning friendship, and we employ social network analysis (SNA) methodology to capture, visualise, and analyse the young adults' significant social relations. Social relations engaged as relatives during rehabilitation are to a large extent determined by the perceptions of professionals and the parents of the young adult. These perceptions contain a limited number of social relations, with priority given to biological and juridical ties. This might reflect the reduced social support available for the young adult, who initially had a much larger social network. The authors suggest a professional rethinking of who "relatives" are as well as considering these social ties as dynamic. Rehabilitation professionals must be aware of and pay attention to differing perceptions that exist as to who qualifies as significant social relations in order to reconsider the practical implementation of relative involvement. The perception of who relatives are during the rehabilitation process should be reconsidered and extended to include who the young adult perceive as significant social relations. Relatives are not a fixed entity and should be considered dynamically throughout the rehabilitation process. Social relations of the young adult must to a larger extent be considered during rehabilitation to prevent social isolation in the long run. [ABSTRACT FROM AUTHOR]

Different cultures and societal structures influence the ethical experiences of physiotherapists. The study aimed to discover and describe contextual shades of ethical situations experienced by physiotherapists in their global practice. This paper reports the qualitative analysis of responses to an optional open question in an internationally distributed online survey (ESPI study) with 1,212 participants from 94 countries. All responses were coded to five categories describing the data's relationship to the survey list of ethical situations. Data that described new ethical situations were analyzed thematically. Three hundred and fifty four individual responses to the optional survey question reported 400 ethical issues. Three hundred and seventy-eight of these issues were associated with the original survey questions. Twenty-two responses raised four new themes of ethical issues: lack of regulatory and/or accreditation policy and infrastructure, lack of recognition of the role and position of physiotherapists in healthcare, economic factors driving the conduct of practice, and political threats. Local contexts and pressures of workplaces and societies in which physiotherapists practice make it almost impossible for some practitioners to comply with codes of ethics. Physiotherapists need support and preparation to respond to local affordances and the complexity, ambiguity, and sometimes messiness of ethical situations encountered in their practice. The findings highlight the relevance of cross-cultural research in the field of physiotherapy, and the necessity of investigating and bridging the gap between professional ethics theory and practice in diverse settings. [ABSTRACT FROM AUTHOR]

A growing body of conceptual evidence over the last decade has increased our understanding of parents' experiences of having an infant with complex congenital heart disease. These concepts include parents' feelings of uncertainty, fear, excitement, and mastery. However, little is known about parents' experiences, confidence, and knowledge acquisition during transition from hospital to home with their infant after the first stage of complex cardiac surgery. A theoretical framework to assess, plan and implement child and family centered care would assist children's cardiac nurses responsible for parental education, discharge planning and coordination. To explore parents' experiences of the transition from hospital to home with their infant, following the first stage of cardiac surgery. A prospective mixed methods longitudinal design. Semi-structured interviews were undertaken, including administration of the Maternal Confidence Questionnaire at four timepoints: before discharge following stage one cardiac surgery (T0), 2 weeks' post discharge (T1), 8 weeks' post discharge (T2) and after stage two surgery (T3). Qualitative data were thematically analyzed. Descriptive statistics were used to characterize the sample and non-parametric repeated measures analysis of variance was used to analyze changes over time in maternal confidence scores. Sixteen parents of 12 infants participated. Four "patterns of transition experience" emerged, the fourth "Mastery", is discussed in this paper. Mastery can be contextualized in terms of the parents' journeys of knowledge construction, gaining confidence and reflection. Learning was dynamic and transformational, but successful learning and acquisition of knowledge was also dependent upon the parents' ability to absorb, integrate and adjust at any given time. Confidence at T0 was significantly lower than at T1 (p =.011), T2 (p =.018) and T3 (p =.012). There were no significant differences between scores at T1, T2 and T3. Liminality, as a concept, described the between and betwixt time that parents experienced as they were preparing for discharge from hospital; excitement to be going home balanced with the fear of being alone and confidence in looking after their fragile infant. Parents of infants with complex congenital heart disease obtain knowledge, confidence, and mastery dependent upon their transition experience and their personal journey through pre-liminal, liminal, and post-liminal phases of discharge from hospital to home. A conceptual framework "Parenting through Transitions – hospital to home" emerged that could assist in structuring assessment of parents' knowledge and support needs within a coordinated discharge process. Identifying individualized support would promote adaptation and adjustment during transition from the pre to post liminal phase, following their infant's first stage of complex cardiac surgery. Parents learning was dynamic and transformational, learning opportunities overlapped transitional phases of their infant's journey, but successful learning and acquisition of knowledge was also dependent upon the parents' ability to absorb, integrate and adjust at any given time. The transition from hospital to home and traversing the physical boundary of leaving the hospital for the first time with their infant (liminal phase), was loaded with emotionally traumatic experiences that could not be separated from the transition that was being explored within this study. Adjusting to the new situation, developing confidence over time, and becoming comfortable as they mastered new skills, demonstrated that some of these parents could pass through that liminal space to mastery of a new normal (post-liminal phase), which encompassed competence, integration, and comfort. [ABSTRACT FROM AUTHOR]

The purpose of this paper was first to gain an in-depth understanding of the barriers and facilitators to implementing the BPS model and pain neuroscience education in the current Lebanese physical therapy health care approach and explore its acceptability. A qualitative semi-structured interview using purposive sampling was conducted with eight Lebanese physical therapists practising in different governorates. The transcribed text from the interviews was analyzed using inductive thematic analysis. Two topics were generated and constructed by the researchers: (1) "barriers to the implementation of pain neuroscience education, with subthemes including (a) "current health care approach," (b) "basic curriculum and continuing education," (c) "patients' barriers"; (2) "facilitators to the implementation of pain neuroscience education," with subthemes containing (a) "interest in the BPS model, (b) "therapeutic alliance," and (c) "motivation for future training on BPS approach." The analysis of the results showed that Lebanese physical therapists currently hold a strong biomedical view of chronic pain, assessment, and treatment. However, despite the presence of barriers and challenges, they are aware and open to consider the implementation and future training about the BPS model and pain neuroscience education in their approach. The exploration of potential barriers and facilitators to the bio-psychosocial model and pain neuroscience education implementation may provide an opportunity for better development and design of a culturally sensitive pain neuroscience education material for Arab-speaking and Lebanese physical therapists. The exploration of barriers and facilitators to the implementation of pain neuroscience education will help to improve pain education and ensure better clinical pain management. The most important barriers were the dominant characteristic of the Lebanese physical therapist's health approach, which is focused on a biomechanically oriented model, and their lack of knowledge to approach chronic pain from a biopsychosocial perspective. [ABSTRACT FROM AUTHOR]

Global health practitioners and policymakers have become increasingly vocal about the complex challenges of identifying and quantifying the causes of death of the world's poorest people. To address this cause-of-death uncertainty and to minimise longstanding sensitivities about full autopsies, the Bill and Melinda Gates Foundation have been one of the foremost advocates of minimally invasive autopsy technology (MIA). MIA involves using biopsy needles to collect samples from key organs and body fluids; as such, it is touted as potentially more acceptable and less invasive than a complete autopsy, which requires opening the cadaver. In addition, MIA is considered a good means of collecting accurate bodily samples and can provide the crucial information needed to address cause-of-death uncertainty. In this paper, we employ qualitative data to demonstrate that while MIA technology has been introduced as a solution to the enduring cause-of-death uncertainty, the development and deployment of technologies such as these always constitute interventions in complex social and moral worlds; in this respect, they are both the solutions to and the causes of new kinds of uncertainties. We deconstruct the ways in which those new dimensions of uncertainty operate at different levels in the global health context. [ABSTRACT FROM AUTHOR]

Research recruitment, eligibility, and who chooses to participate shape the resulting data and knowledge, which together inform interventions, treatment, and programming. Patterns of research participation are particularly salient at this moment given emerging biomedical prevention paradigms. This paper explores the perspectives of Black and Latino young men who have sex with men (BL-YMSM) regarding research recruitment and eligibility criteria, how their experiences influence willingness to enroll in a given study, and implications for the veracity and representativeness of resulting data. We examine inclusion and recruitment as a complex assemblage, which should not be reduced to its parts. From April to July 2018, we conducted in-depth interviews with 30 BL-YMSM, ages 18–29, in New York City. Interviews were recorded, transcribed, and analyzed using the constant comparative method. Black and Latino YMSM's responses unveiled tensions between researchers', recruiters', and participants' expectations, particularly regarding eligibility criteria (e.g. age, sex frequency), assumptions about 'risky behaviors,' and the 'target' community. Men preferred peer-to-peer recruitment, noting that most approaches miss key population segments. Findings highlight the need to critically examine the selected 'target' community, who sees themselves as participants, and implications for data comprehensiveness and veracity. Study eligibility criteria and recruitment approaches are methodological issues that shape knowledge production and the policies and programs deployed into communities. These findings can inform how future research studies frame recruitment and eligibility in order to better meet the needs of participants and ensure future research engagement. [ABSTRACT FROM AUTHOR]

Developing a deep and contextualised understanding of risk is important for public health responses to young people's alcohol consumption, which is frequently positioned as an outcome of risky behaviour. This paper expands conceptualisations of risk to encompass its wider social and cultural context through a social practice exploration of young people's controlled and managed intoxicated alcohol consumption practice. We report data from a fourteen-month qualitative study of the alcohol consumption practices of 23 young people in England, drawing on group interviews and social media interactions. Our findings provide a nuanced understanding of risk-taking, demonstrating that risk is an important aspect of the ongoing participation and performance in alcohol consumption practice and that health information and advice can be and was frequently incorporated into drinking practice without contributing to fundamental change. This raises new questions about the effectiveness of health interventions that focus on the individual, discussed in the final section of the paper. [ABSTRACT FROM AUTHOR]

Like in many countries, the Australian Government has conducted an inquiry into child sexual abuse that occurred in institutional settings (The Royal Commission into Institutional Responses to Child Sexual Abuse). Drawing on the findings from a qualitative study commissioned by the Royal Commission, this paper explores the perceptions of victim/survivors1 of the ways in which institutions (or individuals within them) responded supportively when sexual abuse was reported. While researchers and inquiries have reported on inadequacy of institutional responses, this paper addresses a research gap by investigating responses that victims/survivors perceived as helpful, while mindful of the overwhelmingly negative nature of their experiences. The paper contributes to the literature on institutional responses to child sexual abuse methodologically – by reporting on the challenges of a study of this type – and theoretically, by proposing a framework indicating how different helpful elements of an institutional response to child sexual abuse relate to each other in the victim/survivors' experiences. The findings are relevant for research on best practice in institutional responses to child sexual abuse. [ABSTRACT FROM AUTHOR]

Individualized funding of disability support services has implications for people's choices about when to share their home. This paper examines how people with disabilities made choices about who to live with and the factors influencing these choices. This paper discusses data from interviews with 30 people with mostly intellectual disabilities using individualized support services, 21 interviews with family members, four interviews with service managers, and a focus group with five support workers. The data come from a large evaluation of individualized housing support programs in New South Wales, Australia. Only some people had the opportunity to choose whether to share and with whom. Their choices were constrained by the range of housing options and their limited experience of them, even when they had support to make choices about shared housing or living alone. In some cases, the choices reflected a conceptualization of people with disabilities as different to other citizens in their rights and expectations about their social arrangements. The results have implications for information sharing, housing stock, and the need to challenge the positioning of people with disabilities relative to other people regarding choices about where and with whom to live. Many people preferred not to live alone, so as to improve their economic and social circumstances, and their choice and control. The choices about shared housing that many people and their supporters made were constrained by their limited experience of housing options or their familiarity with the range of choices made by other people with disabilities. Being able to draw on the material, social, and information resources of family made a big difference to their housing choices. It raises questions for policy implementation about whether individualized support may lock some people into shared housing arrangements by failing to include housing costs in the individual package. [ABSTRACT FROM AUTHOR]

Peer-sexual abuse in educational settings is a matter of international concern – featured in mainstream news reports, televised through drama series and documented in research. In 2018 the UK government revised and published a series of policy documents to assist schools in addressing the phenomenon. This paper considers the sufficiency of this policy framework through social field analysis of focus groups with staff and students at seven educational establishments in England that ran from 2015 to 2017. Analysis reveals four avenues through which staff and students created or reinforced norms the underpinned harmful sexual behaviours and in doing so created contexts conducive with peer-sexual abuse. While policy developments have made initial acknowledgements of school cultures as associated to peer-sexual abuse, significant progress is required if policy is to provide a framework that challenges, rather than reinforces, individualised – and on occasion victim-blaming – narratives of peer-sexual abuse. [ABSTRACT FROM AUTHOR]

This paper introduces a new electronic system for dropping courses that do not rely on the cumbersome paper system traditionally used by educational institutions. The new sub-system of the On-Demand University Services (ODUS Plus) will eliminate the hierarchical and inefficient paper system, which results in institutional delays. By using both quantitative and qualitative techniques, as well as a correlational methodology, it will be shown that, withdraw approval requests have streamlined, thus improving the system to process such requests. The following study will outline the efficacy of using ODUS Plus for course withdrawals by college and university administrators. The findings suggest that the implementation of such a system has a dual value; namely, it improves efficiency and functions as a source of knowledge regarding student academic preferences. [ABSTRACT FROM AUTHOR]

Purpose: The "Joint Resources – Sedentary Behavior Study" (JR-SB) revealed significant behavioral and cardio-metabolic effects of reducing daily sedentary behavior replaced by light-intensity physical activity in patients with rheumatoid arthritis. This study explores the participant perception and experiences of the intervention and impact on the participants' health, family and physical activity behavior. Materials and Methods: A mixed-methods study design, including quantitative and qualitative data, was applied. Quantitative data were collected post-intervention using a questionnaire (n = 69) evaluating experiences of participation in the intervention. By maximum variation sampling, 18 participants were recruited to three focus group interviews with discussions of intervention elements. Data from the two sub-studies were collected and analyzed separately, although integrated at the interpretation and reporting level. Results: Based on four overarching themes, results indicated participant satisfaction with the individually tailored, behavioral approach and the focus on light-intensity physical activity rather than higher intensities. Study participation had an additional positive impact on the behaviors of family and social relations. Conversely, the family motivated the participants to achieve their physical activity goals. Conclusions: The study results support the use of individually tailored and behavioral approaches to reduce sedentary behavior, increase light-intensity physical activity and improve physical abilities in patients with rheumatoid arthritis. This paper presents positive participant perception and motivation for an individually tailored, behavioural intervention that aimed to reduce sedentary behaviour replaced by light-intensity physical activity in patients with rheumatoid arthritis. The results indicate that especially the focus on light-intensity physical activity, a consistent focus on the individual's everyday life and continuous support from health professionals motivated the participants to reduce their daily sedentary behaviour – also in the long term. Involvement of participants' family members seems to have influence on their own physical activity behavior as well as on the participants' motivation for changing physical activity behavior. Together with earlier evidence, the results underpin the use of behavioural strategies to support patients with rheumatoid arthritis in achieving their physical activity goals and in improving the abilities needed to manage their everyday lives. [ABSTRACT FROM AUTHOR]

Community mobilisation is recognised as an important strategy to shift inequitable gender norms and ensure an enabling environment to prevent gender-based violence (GBV). Yet there is a need to better understand the factors that facilitate effective community activism in particular contexts. Although fundamental to the success of mobilisation programmes, there is also limited appreciation of the experiences and agency of engaged community activists. This paper draws on qualitative evaluations from two community mobilisation GBV prevention programmes: the Gender Violence in the Amazon of Peru (GAP) Project and the Indashyikirwa programme in Rwanda. In Peru, participatory data was collected, in addition to baseline and endline interviews with 8 activists. In Rwanda, baseline and endline interviews and observations were conducted with 12 activists, and interviews were conducted with 8 staff members. The data was thematically analysed, and a comparative case study approach was applied to both data sets. The comparative study identified similar programmatic aspects that could hinder or enable activist's engagement and development, and how these are embedded within contextual social and structural factors. We discuss these insights in reference to the current emphasis in public health on individualistic programming, with insufficient attention to how wider environments influence violence prevention programming. [ABSTRACT FROM AUTHOR]

The landscape of cancer is changing, with earlier detection and the emergence of new treatment options signalling the potential reconfiguration of cancer (for some) as a chronic condition. Cancer is increasingly experienced in terms of chronicity, incorporating both ongoing episodes of acute treatment alongside the long-term management of disease, symptoms, and side effects. This emphasis refocuses attention toward living-with, as well as beyond, cancer. Yet, how cancer chronicity is understood and experienced by both patients and healthcare professionals remains underexplored. While sociological scholarship has critically analysed how chronic illness has been positioned as a problem of/for the person and/or the healthcare system, less attention has been paid to instances like cancer, where chronicity might be viewed as reflective of forms of success (e.g. through the deferral of mortality even in the absence of 'cure'). In this paper we draw on qualitative interview data from a large study of cancer survivorship including patients, their family carers and health professionals, across two Australian hospitals. We critically analyse the dimensions of chronicity in the cancer sphere, understanding cancer-as-chronicity as producing a particular form of subjectivity, shaped by the everyday management and experience of treatment, impairment, symptoms, and side-effects. We posit that constructions of cancer as chronic, and associated imperatives linked to longevity, commitment, and resilience, are placing new demands on patients, family carers, and professionals alike. [ABSTRACT FROM AUTHOR]

Up to two-thirds of South African adolescent mothers drop out of school, which increases their HIV risk and other poor health outcomes. Despite variability in adolescent mothers' schooling trajectories, we have a limited understanding of their re-enrollment in school following the life-changing circumstance of childbirth. In this paper, we draw on qualitative interviews (n = 16) and quantitative surveys (n = 109) with adolescent mothers (aged 14–19) who had recently given birth to describe how access to individual and social resources contributes to their resilience following childbirth and thus affects their ability to re-enroll in school. Nearly all the adolescent mothers in our study expressed a desire to return to school, and most of their families also emotionally supported adolescent mothers in these goals. Despite mothers' high hopes and familial emotional support, only half of the adolescent mothers re-enrolled in the first six months following childbirth. Adolescent mothers' re-entry trajectories were strongly affected by institutional support and by family members' provision of instrumental support. To a lesser extent, support from partners and peers also played a role in re-enrollment. Multilevel interventions to maximise resilience following the onset of early motherhood may facilitate return to school and positively influence adolescent mothers' health and well-being. [ABSTRACT FROM AUTHOR]

This paper explores adolescent girls' and young women's (AGYW) aspirations, factors that influence aspirations, and how their aspirations inform their sexual decision-making and behaviour. This study employed a qualitative design involving six participatory focus group discussions and 17 in-depth interviews with AGYW in – and out-of-school. Fieldwork was undertaken in rural and urban Tanzania. Thematic analysis was conducted using NVIVO software. Aspirations of AGYW's were categorised as short and long-term. Short-term aspirations were associated with the social status derived from obtaining trendy items such as nice clothing, or smart phones. Long-term aspirations included completing secondary education, having a professional job, being respected, getting married and having children. Aspirations were influenced by aspects of the social context, such as peers and structural factors that dictated what was acceptable for respectable AGYW. AGYW lacked the independent capabilities to meet long-term aspirations such as completing education. In pursuit of their short – and long-term aspirations, AGYW engaged in higher risk sexual behaviours such as transactional sex, age-disparate sex and condomless sex. AGYW's aspirations were important in determining their sexual decision making. Interventions should capitalise on AGYW's aspirations when addressing their SRH risks by finding innovative ways of engaging them based on their circumstances and aspirations. [ABSTRACT FROM AUTHOR]

This paper presents an in-depth study of intra-disability diversity in the digital realm and the related role of individuality and selectiveness in the digital choices and experiences of people with disabilities (PwD). The study adopts the interactionist model of disability and problematises conceptual uniformity in research that focuses on the medical and socially-constructed features of disability as those determining digital constraints and affordances for PwD. Through primary qualitative evidence, it argues that individuality and selectiveness shape a complex terrain of intra-disability diversity, which forms the nuances and experiences of digital inclusion for PwD. Thus, it invites researchers to move beyond disability-fixed categorisations and offers a 3-tier recommendation for future research to explain the range of PwD' perceptions and experiences in the digital realm. [ABSTRACT FROM AUTHOR]

This paper explores public health policy implementation through partnership working at the local level by examining how local actors from public health, and the wider workforce make sense of and work on social inequalities in health. An ethnographic case study was used to examine policy implementation in one local strategic partnership in north-west England during a period of significant resource constraint. Semi-structured interviews were the primary method of data generation. Sensitising concepts from figurational sociology were used to develop a theoretical account of how local policy implementation directed at narrowing social inequalities in health tended to give rise to relatively fragmented and short-term services, projects and practices, which focused on lifestyle factors and behaviour change. Theorising partnership work as figurations goes some way to explaining the apparent paradox among participants who expressed a relatively detached appreciation of wider social influences, alongside emotional involvement in their work. This process of individualisation explains how local professionals tended to conceptualise health inequality and the social determinants of health as personal troubles. Individualisation meant that the social reality of working in partnerships on difficult issues was simplified. Thus, any scope for working on the social determinants of health tended to be overlooked. The extent to which this was intentional or a matter of struggling to see opportunities, or a mixture of the two, was difficult to discern. Although the policy landscape has changed, the findings give some insight into understanding how local collaborative processes reproduce local public health work underpinned by lifestyle choices. [ABSTRACT FROM AUTHOR]

Background: End-of-life treatment decisions present special challenges for prehospital emergency providers. Paramedics regularly make value-laden choices that transcend technical judgment and professional skill, affecting the type of care, how and to whom it is provided. Changes in prehospital emergency care over the last decade have created new moral challenges for prehospital emergency providers; these changes have also accentuated the need for paramedics to make rapid and reasoned ethical judgments. Objective: The purpose of the study was to explore the decision-making process that occurs when prehospital emergency teams respond to an end-of-life call with a focus on how state authorized documents such as a Non-Hospital Do Not Resuscitate (NHDNR) or Medical/Physician's Orders for Life-Sustaining Treatment (MOLST/POLST) or lack thereof inform decision-making. This paper presents the specific circumstances that informed the need for intervention from Online Medical Direction (OLMD) framed in the perspectives and words of the prehospital providers seeking that assistance. Methods: This study involved in-depth in-person interviews with 50 providers to elicit participants' experiences in their own words using a semi-structured interview instrument. Interviews were audio recorded and transcribed with permission. Results: Five themes emerged that illuminated how and when OLMD was involved in emergency end-of-life decisions: Termination of Resuscitation (TOR); Family Revoked DNR; Missing Documents; No Documents and No CPR; and Unusual Situations. Participants illustrated how the decision to terminate efforts was best-supported when it was made by collaboration between the on-scene provider and OLMD. Participants described ethical dilemmas when families asked them to initiate CPR in the presence of DNR orders and cognitive dissonance when CPR has been initiated but a valid DNR/MOLST is subsequently located. Conclusions: The study findings demonstrate the invaluable contribution of OLMD for complex end-of-life care decisions by prehospital providers, especially when there are difficult legal, ethical, and logistical questions. OLMD provides far more than technical support. [ABSTRACT FROM AUTHOR]

This paper investigates the social representations (SR) of tutors and preservice teachers regarding pedagogical strategies that promote generative reflection in practicum tutorials during initial teacher training. Using a qualitative approach, individual and group interviews were conducted with tutors and preservice teachers on video recordings of classes given by the preservice teachers and tutorial sessions. The analysis was inspired by Grounded Theory. The findings reveal that the tutors favour constructivist strategies, but guided strategies are predominant in their training practices, based on their role as experts, which is consistent with the demands of preservice teachers regarding this role. These results conflict with the literature in the area, which points to constructivist strategies as promoting reflective generative practice. [ABSTRACT FROM AUTHOR]

Research into children's voices continues to receive significant attention due to the limited progress made around the world in meeting Article 12 of the Convention on the Rights of the Child: the right to be heard and participate in decision making. However, there is a paucity of research providing insights into children's voices in family support services linked with the child protection system. This paper contributes new understandings into the everyday practice experiences of 46 frontline urban and regional practitioners working in family support services for UnitingCare, a nongovernment organisation in Queensland, Australia. Critical and interpretive research utilising WorldCafé focus groups reveals hearing children's voices is not occurring as an everyday practice. It identified four intersecting influences that prevent rights-based children's participation: program, conceptual, organisational, and direct practice issues. A sustained paradigm shift to protection with participation is needed to ensure children's voices are included as an everyday practice in family support services. IMPLICATIONS Culture, program, organisation, and practice level challenges intersect to impede frontline family support services practitioners from hearing children's voices as an everyday practice. A paradigm shift to "protection with participation", a culture that values children and their voices, alongside steadfast leadership are needed to embed a rights-based, child-inclusive approach in family support services as part of the care continuum. [ABSTRACT FROM AUTHOR]

Children with medical complexity (CMC) receive life-sustaining treatments such as tracheostomy. The objective of this paper is to explore the roles of religion and spirituality (R&S) of caregivers of children with medical complexity (CMC) in their decision to pursue tracheostomy for their children. We conducted 41 in-depth interviews of caregivers of CMC who had received tracheostomies in the prior 5 years. Four themes emerged: (1) Caregivers believed R&S to be powerful for their children's healing, and helped them cope with their children's illnesses; (2) Spirituality was an important factor for caregivers in the decision to pursue tracheostomy for their children; (3) Many caregivers did not discuss their spirituality with clinicians for a variety of reasons; (4) Clergy and hospital chaplains played a major supportive role overall; however, they did not play a significant role in the decision-making process. Our study shows the importance of R&S, and the roles of clergy and chaplains in pediatric tracheostomy decision-making. [ABSTRACT FROM AUTHOR]

Arts programming can amplify youth voice, creative self-expression, and promote civic engagement and social change. This paper describes a case study of a youth participatory action research at an arts organization in the northeast of the U.S. that promoted youth participation, critical reflection, and action. Field observations and individual interviews with adult and youth staff were conducted and analyzed using thematic analysis. Findings suggest YPAR represented an opportunity for youth to develop critical consciousness, leadership skills, and create change. Adults integrated opportunities for youth to lead in arts dissemination and action initiatives. Implications and challenges including sustainability were identified. [ABSTRACT FROM AUTHOR]

This qualitative study is part of a project aiming to evaluate a community-based approach to the delivery of intermittent preventive treatment of malaria in pregnancy with sulfadoxine-pyrimethamine (IPTp-SP) through community health workers (CHWs) in four sub-Saharan African countries: the Democratic Republic of Congo (DRC), Madagascar, Mozambique and Nigeria. The study aimed to understand the factors that influence the anticipated acceptability of this intervention. A total of 216 in-depth interviews and 62 focus group discussions were carried out in the four country sites with pregnant women, women of reproductive age, community leaders, pregnant women's relatives, CHWs, formal and informal health providers. Grounded theory guided the study design and data collection, and content and thematic analysis was performed through a comparative lens. This paper focuses on one crosscutting theme: trust-building. Two mechanisms that underpin communities' trust in delivery of IPTp via CHWs were identified: 'perceived competence' and 'community and healthcare system integration'. Communities' perception of CHWs' competence shapes their trust in them, which suggests that CHWs' credentials should be made public and that specialised training in maternal health is required for them. Integration depends on the promotion of socially embedded practices and the involvement of formal healthcare systems in CHWs' work. [ABSTRACT FROM AUTHOR]

This article explores the ways in which patients and their families (hereafter referred as ‘users’) share and evaluate disease-specific evidence via online communities. The aim is to understand what this user engagement in healthcare and knowledge production reveals about society’s shifting perceptions of trust in the institutions of ‘evidence-based medicine’ (EBM) such as regulators, bioethicists and scientists and the implications for EBM. To do this, I use the case of experimental stem cell therapies (eSCTs). ESCTs are commonly labelled in academic literature as ‘unproven’, a label that frames their lack of conclusive clinical evidence as unsafe, inefficacious and thus unethical when clinically used. Despite this framing, users engage with other users to share and evaluate all available evidence for themselves, including on-going clinical trial and experiential evidence to build trust for and undertake eSCTs. Increasingly, this user engagement with evidence takes place in online communities that range from user-created and user-run Facebook pages to user-to-user discussion forums on healthcare provider sites or blogs with little if any provider-input in conversations. In this paper, I draw on a sample of these user conversations to show the complex and unpredictable ways in which what counts as evidence and how trust is built for it are shifting. In so doing, I reflect on the shifting relations between the institutions of EBM and society for greater control over evidence that lies at the heart of the evidentiary basis of public health policies. [ABSTRACT FROM AUTHOR]

Understanding Twitter by individuals and organizations to raise awareness and give voice to the disability community provides important insight into digital discourse around disability. This study examines #disability tweets shared during National Disability Employment Awareness Month in October 2018. Sourced and cleaned, English language tweets (n = 12,963) were analyzed through a mixed-methods approach. As the title of this paper, a tweet from our dataset, suggests, Twitter discourse reflects disability activism and culture as it exists globally. This work highlights important methodological considerations for differentiating the ways individuals and organizations utilize Twitter and highlights the importance of qualitative analysis in this regard. [ABSTRACT FROM AUTHOR]

Evidence suggests that physical activity (PA) programmes promoted via healthcare settings worldwide may not currently meet the needs of many patients and healthcare professionals (HCPs). This paper describes the outcomes of a qualitative enquiry into the perspectives of patients and professionals from multiple healthcare services regarding the role of PA. 19 patients and 22 HCPs were purposively recruited from physiotherapy, podiatry, chronic pain, diabetes and continence services at a community-based healthcare clinic in the United Kingdom. Participants' views were explored using semi-structured interviews and analysed using thematic analysis. Results identified five themes: differences between the social and medical rationales underpinning PA promotion; the impact of the patient-professional relationship on patient activation, self-management and PA; a risk culture surrounding PA; challenges to meet variation in patients' needs and preferences; and lack of formal role for PA as a core part of routine healthcare. The study highlights tensions between needs and aspirations, and the reality of delivering advice and support for PA. Challenges resonated with patients and HCPs across different care groups and were not condition-specific. This highlights a need for sharing good practice across healthcare services and system-level interventions to address organisational barriers to the promotion of PA. [ABSTRACT FROM AUTHOR]

The past two decades have seen a growing call for researchers, policy-makers and health care providers to collaborate in efforts to bridge the gaps between research, policy and practice. However, there has been a little attention focused on documenting the challenges of dealing with decision-makers in the course of implementing a research project. This paper highlights a collaborative research project aiming to implement the accountability for reasonableness (AFR) approach to priority setting in accordance with the Response to Accountable Priority Setting for Trust in Health Systems (REACT) project in Tanzania. Specifically, the paper examines the challenges of dealing with decision-makers during the project-implementation process and shows how the researchers dealt with the decision-makers to facilitate the implementation of the REACT project. Key informant interviews were conducted with the Council Health Management Team (CHMT), local government officials and other stakeholders, using a semi-structured interview guide. Minutes of the Action Research Team and CHMT were analysed. Additionally, project-implementation reports were analysed and group priority-setting processes in the district were observed. The findings show that the characteristics of the REACT research project, the novelty of some aspects of the AFR approach, such as publicity and appeals, the Action Research methodology used to implement the project and the traditional cultural contexts within which the project was implemented, created challenges for both researchers and decision-makers, which consequently slowed down the implementation of the REACT project. While collaboration between researchers and decision-makers is important in bridging gaps between research and practice, it is imperative to understand the challenges of dealing with decision-makers in the course of implementing a collaborative research project. Such analyses are crucial in designing proper strategies for improved communication and for the utilisation of research projects over time. [ABSTRACT FROM AUTHOR]

To reach the most vulnerable individuals in under-resourced countries, health communication interventions increasingly move towards the community level. However, little is known about how health information spreads through local social networks. This paper maps the health information network of a rural trading centre in Uganda. As part of a five-year ethnographic study of sustainable community health resources, ego networks were obtained for 231 village residents in March 2014. Using both ethnographic and social network data, we analyze how the village social network is structured, and how this structure may influence the transmission of health information. Results show a network with low average proximity, with a small number of individuals, notably key administrative officials, much closer connected to many other community members than average. However, because of social partitioning in the village network, a number of people are outside the social clusters in which the top influencers are located. [ABSTRACT FROM AUTHOR]