Social research for a multiethnic population: do the research ethics and standards guidelines of UK Learned Societies address this challenge?

There is increasing recognition in the UK that social science research should generate an evidence base that reflects the ethnic diversity of the population and informs positive developments in public policy and programmes for all. However, describing and understanding ethnic diversity, and associated disadvantage, is far from straightforward. In practice, the ethical and scientific arguments around whether and how to incorporate ethnicity into policy-relevant social research are complex and contentious. In particular, untheorised or insensitive inclusion of data on ethnic 'groups' can have negative consequences. The present investigation begins to explore the extent to which social scientists have access to advice and guidance in this area of research. Specifically, the paper examines how ethnic diversity is explicitly or implicitly considered within the research ethics and scientific standard guidance provided by UK social science Learned Societies to their members. The review found little in the way of explicit attention to ethnic diversity in the guidance documents, but nevertheless identified a number of pertinent themes. The paper compiles and extrapolates these themes to present a tentative set of principles for social scientists to debate and further develop

Contributions of Non-consumptive Wildlife Tourism to Conservation

Wildlife tourism has the potential to contribute to conservation through a variety of mechanisms. This chapter presents a preliminary assessment of the extent to which this potential is currently being realised, comparing tourism based on viewing of animals in captive settings (with a focus on federated zoos) with that in free-ranging situations (wildlife watching). The key mechanisms involved are: direct wildlife management and research; use of income derived from wildlife tourism to fund conservation; education of visitors to behave in a more conservation-friendly manner; political lobbying in support of conservation; and provision of a socio-economic incentive for conservation. All of these occur in at least some zoos and wildlife-watching situations, and collectively the contribution of non-consumptive wildlife tourism to conservation is significant, though impossible to quantify. The key strengths of the zoo sector in this regard are its inputs into captive breeding and its potential to educate large numbers of people. in contrast, wildlife watching provides significant socio-economic incentives for conservation of natural habitats. There seem to be significant opportunities for expanding the role of non-consumptive wildlife tourism in conservation

'Selling it as a holistic health provision and not just about condoms ?' Sexual health services in school settings: current models and their relationship with sex and relationships education policy and provision

In this article we discuss the findings from a recent study of UK policy and practice in relation to sexual health services for young people, based in - or closely linked with - schools. This study formed part of a larger project, completed in 2009, which also included a systematic review of international research. The findings discussed in this paper are based on analyses of interviews with 51 service managers and questionnaire returns from 205 school nurses. Four themes are discussed. First, we found three main service permutations, in a context of very diverse and uneven implementation. Second, we identified factors within the school context that shaped and often constrained service provision; some of these also have implications for sex and relationships education (SRE). Third, we found contrasting approaches to the relationship between SRE input and sexual health provision. Fourth, we identified some specific barriers that need to be addressed in order to develop 'young people friendly' services in the school context. The relative autonomy available to school head teachers and governors can represent an obstacle to service provision - and inter-professional collaboration - in a climate where, in many schools, there is still considerable ambivalence about discussing 'sex' openly. In conclusion, we identify areas worthy of further research and development, in order to address some obstacles to sexual health service and SRE provision in schools

Mutations in CHMP2B in lower motor neuron predominant amyotrophic lateral sclerosis (ALS)

Background: Amyotrophic lateral sclerosis (ALS), a common late-onset neurodegenerative disease, is associated with fronto-temporal dementia (FTD) in 3-10% of patients. A mutation in CHMP2B was recently identified in a Danish pedigree with autosomal dominant FTD. Subsequently, two unrelated patients with familial ALS, one of whom also showed features of FTD, were shown to carry missense mutations in CHMP2B. The initial aim of this study was to determine whether mutations in CHMP2B contribute more broadly to ALS pathogenesis. Methodology/Principal Findings: Sequencing of CHMP2B in 433 ALS cases from the North of England identified 4 cases carrying 3 missense mutations, including one novel mutation, p. Thr104Asn, none of which were present in 500 neurologically normal controls. Analysis of clinical and neuropathological data of these 4 cases showed a phenotype consistent with the lower motor neuron predominant (progressive muscular atrophy (PMA)) variant of ALS. Only one had a recognised family history of ALS and none had clinically apparent dementia. Microarray analysis of motor neurons from CHMP2B cases, compared to controls, showed a distinct gene expression signature with significant differential expression predicting disassembly of cell structure; increased calcium concentration in the ER lumen; decrease in the availability of ATP; down-regulation of the classical and p38 MAPK signalling pathways, reduction in autophagy initiation and a global repression of translation. Transfection of mutant CHMP2B into HEK-293 and COS-7 cells resulted in the formation of large cytoplasmic vacuoles, aberrant lysosomal localisation demonstrated by CD63 staining and impairment of autophagy indicated by increased levels of LC3-II protein. These changes were absent in control cells transfected with wild-type CHMP2B. Conclusions/Significance: We conclude that in a population drawn from North of England pathogenic CHMP2B mutations are found in approximately 1% of cases of ALS and 10% of those with lower motor neuron predominant ALS. We provide a body of evidence indicating the likely pathogenicity of the reported gene alterations. However, absolute confirmation of pathogenicity requires further evidence, including documentation of familial transmission in ALS pedigrees which might be most fruitfully explored in cases with a LMN predominant phenotype

An ethnographic investigation of maternity healthcare experience of immigrants in rural and urban Alberta, Canada

Background: Canada is among the top immigrant-receiving nations in the world. Immigrant populations may face structural and individual barriers in the access to and navigation of healthcare services in a new country. The aims of the study were to (1) generate new understanding of the processes that perpetuate immigrant disadvantages in maternity healthcare, and (2) devise potential interventions that might improve maternity experiences and outcomes for immigrant women in Canada. Methods: The study utilized a qualitative research approach that focused on ethnographic research design and data analysis contextualized within theories of organizational behaviour and critical realism. Data were collected over 2.5 years using focus groups and in-depth semistructured interviews with immigrant women (n = 34), healthcare providers (n = 29), and social service providers (n = 23) in a Canadian province. Purposive samples of each subgroup were generated, and recruitment and data collection – including interpretation and verification of translations – were facilitated through the hiring of community researchers and collaborations with key informants. Results: The findings indicate that (a) communication difficulties, (b) lack of information, (c) lack of social support (isolation), (d) cultural beliefs, e) inadequate healthcare services, and (f) cost of medicine/services represent potential barriers to the access to and navigation of maternity services by immigrant women in Canada. Having successfully accessed and navigated services, immigrant women often face additional challenges that influence their level of satisfaction and quality of care, such as lack of understanding of the informed consent process, lack of regard by professionals for confidential patient information, short consultation times, short hospital stays, perceived discrimination/stereotyping, and culture shock. Conclusions: Although health service organizations and policies strive for universality and equality in service provision, personal and organizational barriers can limit care access, adequacy, and acceptability for immigrant women. A holistic healthcare approach must include health informational packages available in different languages/media. Health care professionals who care for diverse populations must be provided with training in cultural competence, and monitoring and evaluation programs to ameliorate personal and systemic discrimination

Crossing cultural divides: a qualitative systematic review of factors influencing the provision of healthcare related to female genital mutilation from the perspective of health professionals

Introduction As a result of global migration, health professionals in destination countries are increasingly being called upon to provide care for women and girls who have experienced female genital mutilation/cutting (FGM/C). There is considerable evidence to suggest that their care experiences are sub-optimal. This systematic review sought to illuminate possible reasons for this by exploring the views, experiences, barriers and facilitators to providing FGM-related healthcare in high income countries, from health professionals’ perspectives. Methods Sixteen electronic databases/resources were searched from inception to December 2017, supplemented by reference list searching and suggestions from experts. Inclusion criteria were: qualitative studies (including grey literature) of any design, any cadre of health worker, from OECD countries, of any date and any language. Two reviewers undertook screening, selection, quality appraisal and data extraction using tools from the Joanna Briggs Institute (JBI). Synthesis involved an inductive thematic approach to identify descriptive themes and interpret these into higher order analytical constructs. Confidence in the review findings was assessed using GRADE-CERQual. The review protocol was registered with PROSPERO (CRD420150300042015). Results Thirty papers (representing 28 distinct studies) from nine different countries were included. The majority of studies focused on maternity contexts. No studies specifically examined health professionals’ role in FGM/C prevention/safeguarding. There were 20 descriptive themes summarised into six analytical themes that highlighted factors perceived to influence care: knowledge and training, communication, cultural (mis)understandings, identification of FGM/C, clinical management practices and service configuration. Together, these inter-linked themes illuminate the ways in which confidence, communication and competence at provider level and the existence and enactment of pathways, protocols and specialist support at service/system level facilitate or hinder care. Conclusions FGM/C is a complex and culturally shaped phenomenon. In order to work effectively across cultural divides, there is a need for provider training, clear guidelines, care pathways and specialist FGM/C centres to support mainstream services

From Space to Eye Lens: Monitoring protected sites with Earth Observation: Combining field data with CASI and Sentinel imagery

This report details work undertaken, led by Manchester Metropolitan University in collaboration with Natural England. The aim of this research was to investigate the potential of Earth observation (EO) data to contribute towards the monitoring of protected sites at the landscape scale, to understand resilience, and to map natural capital assets. This was achieved through the integration of field vegetation survey data with Sentinel-2 and CASI imagery to map ecosystem attributes, particularly ecological gradients and species and plant communities. Two contrasting areas in the north-west of England were used as case studies: Ainsdale National Nature Reserve (NNR) sand dunes and the Forest of Bowland blanket bog. Based on the outcomes of this research, a number of recommendations for future study and implementation have been outlined

Seeking culturally safe care: a qualitative systematic review of the healthcare experiences of women and girls who have undergone female genital mutilation/cutting

Objective: To explore the experiences of accessing and receiving healthcare related to female genital mutilation/cutting (FGM/C) across the life course from the perspective of women and girls who have undergone FGM/C. Design: A systematic review of qualitative research studies using a thematic synthesis approach. Methods: Inclusion criteria were qualitative studies (including grey literature) of any design, from Organisation for Economic Co-operation and Development (OECD) countries, of any date and any language. Sixteen electronic databases were searched from inception to December 2017, supplemented by reference list searching. Papers were screened, selected and quality-appraised by two reviewers using established tools from the Joanna Briggs Institute. NVivo software was used to extract study characteristics and code study findings. An inductive thematic synthesis approach was undertaken to identify descriptive themes and interpret these into higher order analytical constructs. Confidence in the review findings was assessed using Grading of Recommendations, Assessment, Development and Evaluations-Confidence in Evidence from Reviews of Qualitative Research (GRADE-CERQual). Results: Fifty-seven papers (from 55 distinct studies) from 14 different OECD countries were included (50% published within the last 8 years). One-third of studies focused exclusively on maternity care experiences, whereas others covered a range of foci. No studies reported explicitly on girls’ experiences or on experiences of health service-led safeguarding interventions. Only three studies addressed psychological care. The synthesis developed 17 descriptive themes, organised into 5 analytical constructs. These related to communication, access to care, experiences of cultural dissonance/integrity, disempowering care experiences and positive care encounters. The themes illuminate significant challenges to obtaining timely and holistic care (especially for deinfibulation), and highlight different ways in which women may experience care as disrespectful, unsafe and disempowering. Key elements of ‘culturally safe care’ are identified. Conclusions: This review has highlighted key knowledge gaps, especially around (1) girls’/unmarried women’s experiences and (2) the impact of recent safeguarding interventions. There is an ongoing need for community engagement, service development and staff training. PROSPERO registration number: CRD420150300012015