Securing recruitment and obtaining informed consent in minority ethnic groups in the UK

Background: Previous health research has often explicitly excluded individuals from minority ethnic backgrounds due to perceived cultural and communication difficulties, including studies where there might be language/literacy problems in obtaining informed consent. This study addressed these difficulties by developing audio-recorded methods of obtaining informed consent and recording data. This report outlines 1) our experiences with securing recruitment to a qualitative study investigating alternative methods of data collection, and 2) the development of a standardised process for obtaining informed consent from individuals from minority ethnic backgrounds whose main language does not have an agreed written form. Methods: Two researchers from South Asian backgrounds recruited adults with Type 2 diabetes whose main language was spoken and not written, to attend a series of focus groups. A screening tool was used at recruitment in order to assess literacy skills in potential participants. Informed consent was obtained using audio-recordings of the patient information and recording patients' verbal consent. Participants' perceptions of this method of obtaining consent were recorded. Results: Recruitment rates were improved by using telephone compared to face-to-face methods. The screening tool was found to be acceptable by all potential participants. Audio-recorded methods of obtaining informed consent were easy to implement and accepted by all participants. Attrition rates differed according to ethnic group. Snowballing techniques only partly improved participation rates. Conclusion: Audio-recorded methods of obtaining informed consent are an acceptable alternative to written consent in study populations where literacy skills are variable. Further exploration of issues relating to attrition is required, and a range of methods may be necessary in order to maximise response and participation

The academia we have and the one we want: on the centrality of gender equality

This concluding essay challenges the tendency in academia to consider feminist epistemologies and gender equality as peripheral when instead they are central to the flourishing of tourism scholarship. We analyse pervasive misconceptions about gender in higher education and present an alternative way of doing academia based on dissent and critical engagement; commitment to democratic practices that allow for different points of view to be shared and accepted as trustworthy; engagement with value judgement in knowledge production; care and accountability in our ways of knowing and teaching; and the establishment of diverse career patterns and decent contractual conditions to researchers so freedom of thought can take place

Asthma in Black African, Black Caribbean and South Asian adolescents in the MRC DASH study: a cross sectional analysis

Extent: 7p.Background: Ethnic differences in the prevalence of asthma among children in the UK are under-researched. We aimed to determine the ethnic differences in the prevalence of asthma and atopic asthma in children from the main UK ethnic groups, and whether differences are associated with differential distributions in social and psychosocial risk factors. Methods: 6,643 pupils aged 11-13 years, 80% ethnic minorities. Outcomes were asthma/wheeze with (atopic) and without hay fever/eczema. Risk factors examined were family history of asthma, length of residence in the UK, socioeconomic disadvantage, tobacco exposure, psychological well-being, and body mass index (BMI). Results: There was a pattern of lower prevalence of asthma in Black African boys and girls, and Indian and Bangladeshi girls compared to White UK. The overall prevalence was higher in Mixed Black Caribbean/White boys, with more atopic asthma in Black Caribbean boys and Mixed Black Caribbean/White boys due to more hayfever. Poor psychological well-being and family history of asthma were associated with an increased risk of asthma within each ethnic group. UK residence for ≤ 5 years was protective for Black Caribbeans and Black Africans. Increased BMI was associated with an increased reporting of asthma for Black Africans. Adjustments for all variables did not remove the excess asthma reported by Black Caribbean boys (atopic) or Mixed Black Caribbean/White boys. Conclusion: The protective effect of being born abroad accounted for ethnic differences in some groups, signalling a role for socio-environmental factors in patterning ethnic differences in asthma in adolescence.Melissa J Whitrow and Seeromanie Hardin

Cheeky Witnessing

Feminists witness legal worlds as they observe, document, and share nothing less than the reproduction of life itself. The world of the abortion trail, where people and things move across borders to change life’s reproduction, has generated a rich plurality of feminist witnessing. In observing how feminist activists improvise with sources, figures and objects of legal consciousness on the abortion trail, this paper seeks to contribute to critical understanding of that plurality, particularly as it emerges in diaspora space. Focusing on Murphy’s concept of immodest witnessing, with its attention to bodies, protocols and apparatuses as constituents of knowledge, the paper thinks with the diasporic feminist activist performance group, Speaking of I.M.E.L.D.A., about how they used self-examination, collective collaboration, and knowledge-sharing on the trail to repeal of Ireland’s Eighth Amendment. The paper argues that their improvisation with legal consciousness of reproductive choice enacts ‘cheeky witnessing’. Cheeky witnessing has three dynamics as a method of observation. First, it is messy and irreverent in innovating with names to display the mixed genealogies of sources of feminist knowledge. Second, cheeky witnessing generates novel subject-figures, such as migrant cleaners, who make knowing connections between different reproductive labourers as observers of the trail in diaspora space. Third, cheeky witnessing places funny objects, knickers in this instance, so as to join up particular public locations and make them more, if unevenly, comfortable for sexual and reproductive bodies. Cheeky witnessing show us how committed and partial practices play a role in speaking across interests and experiences, in stretching the legal imagination, and in sustaining the everyday grind of making a better world

Transition from children's to adult services for adolescents/young adults with life-limiting conditions : developing realist programme theory through an international comparison

Abstract Background Managing transition of adolescents/young adults with life-limiting conditions from children’s to adult services has become a global health and social care issue. Suboptimal transitions from children’s to adult services can lead to measurable adverse outcomes. Interventions are emerging but there is little theory to guide service developments aimed at improving transition. The Transition to Adult Services for Young Adults with Life-limiting conditions (TAYSL study) included development of the TASYL Transition Theory, which describes eight interventions which can help prepare services and adolescents/young adults with life-limiting conditions for a successful transition. We aimed to assess the usefulness of the TASYL Transition Theory in a Canadian context to identify interventions, mechanisms and contextual factors associated with a successful transition from children’s to adult services for adolescents/young adults; and to discover new theoretical elements that might modify the TASYL Theory. Methods A cross-sectional survey focused on organisational approaches to transition was distributed to three organisations providing services to adolescents with life-limiting conditions in Toronto, Canada. This data was mapped to the TASYL Transition Theory to identify corresponding and new theoretical elements. Results Invitations were sent to 411 potentially eligible health care professionals with 56 responses from across the three participating sites. The results validated three of the eight interventions: early start to the transition process; developing adolescent/young adult autonomy; and the role of parents/carers; with partial support for the remaining five. One new intervention was identified: effective communication between healthcare professionals and the adolescent/young adult and their parents/carers. There was also support for contextual factors including those related to staff knowledge and attitudes, and a lack of time to provide transition services centred on the adolescent/young adult. Some mechanisms were supported, including the adolescent/young adult gaining confidence in relationships with service providers and in decision-making. Conclusions The Transition Theory travelled well between Ireland and Toronto, indicating its potential to guide both service development and research in different contexts. Future research could include studies with adult service providers; qualitative work to further explicate mechanisms and contextual factors; and use the theory prospectively to develop and test new or modified interventions to improve transition

Specific antenatal interventions for Black, Asian and Minority Ethnic (BAME) pregnant women at high risk of poor birth outcomes in the United Kingdom: a scoping review

Background: Disparity exists in maternal and infant birth outcomes of Black and Minority Ethnic (BAME) women giving birth in the United Kingdom (UK) compared to the majority. There is therefore a need to reconsider existing maternity service provision to ensure culturally competent services. The purpose of this scoping review was to ascertain what specific maternity interventions have been implemented in the UK for BAME women (2004–2014) so that increased awareness of the need and scope of specific maternity interventions for BAME women can be identified. Methods: A scoping review was conducted in order to determine the evidence base. It was determined that no prior systematic reviews had been conducted and it was apparent that literature in this field was sparse. Scoping review is an ideal method when literature is likely to be heterogeneous and the research field relatively unexplored. A keyword strategy was used implementing population (P), intervention (I), comparison (C) and outcomes (O). Results: An initial 2188 papers were identified. Following screening and review, only 5 heterogeneous papers remained suitable and were included. The included interventions employed sample sizes of N = 160-1441, examined a range of different outcome measures and were delivered across different parts of the UK with high numbers of BAME residents. Conclusions: There is a lack of rigorous research interventions and practice interventions which are currently documented, of specific maternity interventions which are aimed to address culturally competent maternity services and the sharing of best practice addressing the increased risks of BAME women delivering in the UK

A review of web-based support systems for students in higher education

Abstract Background Recent evidence suggests that there is an increasing need for accessible and anonymous services to support higher education (HE) students suffering from psychological and/or academic difficulties. Such difficulties can lead to several negative outcomes, including poor academic performance, sub-optimal mental health, reduced study satisfaction, and dropout from study. Currently, universities in the UK lack financial resources and the on-campus mental health services traditionally offered to students are increasingly economically unsustainable. Compounded by the perceived stigma of using such services, mental health providers have been driven to address the escalating needs of students through online services. Methods In this paper, we review online support systems identified through a literature search and a manual search of references in the identified papers. Further systems were identified through web searches, and systems still in development were identified by consultation with researchers in the field. We accessed systems online to extract relevant information, regarding the main difficulties addressed by the systems, the psychological techniques used and any relevant research evidence to support their effectiveness. Conclusion A large number of web-based support systems have been developed to support mental health and wellbeing, although few specifically target HE students. Further research is necessary to establish the effectiveness of such interventions in providing a cost-effective alternative to face-to-face therapy, particularly in certain settings such as HE institutions

Towards transnational feminist queer methodologies

This article introduces the possibilities of transnational feminist queer research as seeking to conceptualise the transnational as a methodology composed of a series of flows that can augment feminist and queer research. Transnational feminist queer methodologies can contest long-standing configurations of power between researcher and researched, subject and object, academics and activists across places, typically those which are embedded in the hierarchies of the Global North/Global South. Beginning with charting our roots in, and routes through, the diverse arenas of transnational, feminist, participatory and queer methodologies, the article uses a transcribed and edited conversation between members of the Liveable Lives research team in Kolkata and Brighton, to start an exploration of transnational feminist queer methodologies. Understanding the difficult, yet constructive moments of collaborative work and dialogue, we argue for engagements with the multiplicities of ‘many-many' lives that recognise local specificities, and the complexities of lives within transnational research, avoiding creating a currency of comparison between places. We seek to work toward methodologies that take seriously the politics of place, namely by creating research that answers the same question in different places, using methods that are created in context and may not be ‘comparable'. Using a dialogue across the boundaries of activism/academia, as well as across geographical locations, the article contends that there are potentials, as well as challenges, in thinking ourselves through transnational research praxis. This seeks complexities and spatial nuances within as well as between places

Consumers’ experiences of back pain in rural Western Australia: Access to information and services, and self-management behaviours.

Background: Coordinated, interdisciplinary services, supported by self-management underpin effective management for chronic low back pain (CLBP). However, a combination of system, provider and consumer-based barriers exist which limit the implementation of such models into practice, particularly in rural areas where unique access issues exist. In order to improve health service delivery for consumers with CLBP, policymakers and service providers require a more in depth understanding of these issues. The objective of this qualitative study was to explore barriers experienced by consumers in rural settings in Western Australia (WA) to accessing information and services and implementing effective self-management behaviours for CLBP. Methods: Fourteen consumers with a history of CLBP from three rural sites in WA participated. Maximum variation sampling was employed to ensure a range of experiences were captured. An interviewer, blinded to quantitative pain history data, conducted semi-structured telephone interviews using a standardised schedule to explore individuals’ access to information and services for CLBP, and self-management behaviours. Interviews were digitally recorded and transcribed verbatim. Inductive analysis techniques were used to derive and refine key themes. Results: Five key themes were identified that affected individuals’ experiences of managing CLBP in a rural setting, including: 1) poor access to information and services in rural settings; 2) inadequate knowledge and skills among local practitioners; 3) feelings of isolation and frustration; 4) psychological burden associated with CLBP; and 5) competing lifestyle demands hindering effective self-management for CLBP.Conclusions: Consumers in rural WA experienced difficulties in knowing where to access relevant information for CLBP and expressed frustration with the lack of service delivery options to access interdisciplinary and specialist services for CLBP. Competing lifestyle demands such as work and family commitments were cited as key barriers to adopting regular self-management practices. Consumer expectations for improved health service coordination and a workforce skilled in pain management are relevant to future service planning, particularly in the contexts of workforce capacity, community health services, and enablers to effective service delivery in primary care