Doing Research with Vulnerable Populations: The Case of Intravenous Drug Users

Article

Examining current provision, practice and experience of initial teacher training providers in Ireland preparing pre service teachers for the inclusion of students with special education needs in physical education classes.

Research from an international perspective in relation to the preparation of pre service teachers in physical education and special educational needs indicates that initial teacher training providers are inconsistent in the amount of time spent addressing the issue and the nature of curricular content (Vickerman, 2007). In Ireland, research of Meegan and MacPhail (2005) and Crawford (2011) indicates that physical education teachers do not feel adequately prepared to accommodate students with Special Educational Needs (SEN) in physical education classes. This study examined initial teacher training provision in Ireland in the training of pre service physical education teachers in SEN. The methodology used was qualitative and included questionnaires and interviews (n=4). Findings indicated that time allocation (semester long modules), working with children with disabilities in mainstream settings (school or leisure centre based), lack of collaboration with other PETE providers (n=4) and a need for continued professional development were themes in need of address. Using a combined approach where the recently designed European Inclusive Physical Education Training (Kudlácěk, Jesina, & Flanagan, 2010) model is infused through the undergraduate degree programme is proposed. Further, the accommodation of hands on experience for undergraduates in mainstream settings and the establishment of inter institutional communities of practice, with a national disability research initiative, is essential to ensure quality adapted physical activity training can be accommodated throughout Ireland.

Doing Research with Vulnerable Populations: The Case of Intravenous Drug Users

Article

Benefits and resource implications of family meetings for hospitalized palliative care patients: research protocol.

BACKGROUND:
Palliative care focuses on supporting patients diagnosed with advanced, incurable disease; it is 'family centered', with the patient and their family (the unit of care) being core to all its endeavours. However, approximately 30-50% of carers experience psychological distress which is typically under recognised and consequently not addressed. Family meetings (FM) are recommended as a means whereby health professionals, together with family carers and patients discuss psychosocial issues and plan care; however there is minimal empirical research to determine the net effect of these meetings and the resources required to implement them systematically. The aims of this study were to evaluate: (1) if family carers of hospitalised patients with advanced disease (referred to a specialist palliative care in-patient setting or palliative care consultancy service) who receive a FM report significantly lower psychological distress (primary outcome), fewer unmet needs, increased quality of life and feel more prepared for the caregiving role; (2) if patients who receive the FM experience appropriate quality of end-of-life care, as demonstrated by fewer hospital admissions, fewer emergency department presentations, fewer intensive care unit hours, less chemotherapy treatment (in last 30 days of life), and higher likelihood of death in the place of their choice and access to supportive care services; (3) the optimal time point to deliver FM and; (4) to determine the cost-benefit and resource implications of implementing FM meetings into routine practice.
METHODS:
Cluster type trial design with two way randomization for aims 1-3 and health economic modeling and qualitative interviews with health for professionals for aim 4.
DISCUSSION:
The research will determine whether FMs have positive practical and psychological impacts on the family, impacts on health service usage, and financial benefits to the health care sector. This study will also provide clear guidance on appropriate timing in the disease/care trajectory to provide a family meeting.

Assessing the Societal Impact of Research: The Relational Engagement Approach

Marketing and policy researchers seeking to increase the societal impact of their scholarship should engage directly with relevant stakeholders. For maximum societal effect, this engagement needs to occur both within the research process and throughout the complex process of knowledge transfer. A relational engagement approach to research impact is proposed as complementary and building upon traditional approaches. Traditional approaches to impact employ bibliometric measures and focus on the creation and use of journal articles by scholarly audiences, an important but incomplete part of the academic process. The authors suggest expanding the strategies and measures of impact to include process assessments for specific stakeholders across the entire course of impact: from the creation, awareness, and use of knowledge to societal impact. This relational engagement approach involves the co-creation of research with audiences beyond academia. The authors hope to begin a dialogue on the strategies researchers can make to increase the potential societal benefits of their research.

A global effort to advance systems change to address the needs of families where a parent has a mental illness.

As part of the Prato Collaborative I am undertaking a Delphi Study to explore the developmental journeys that nine different countries (including NI and Ireland) have undertaken to better meet the needs of families where a parent has a mental illness in adult mental health and children’s services. This research has potential to impact FFP in adult mental health and children's services.

Progress and Research in Cybersecurity - Supporting a resilient and trustworthy system for the UK

Executive summary
Digital systems have transformed, and will continue to transform, our world. Supportive government policy, a strong research base and a history of industrial success make the UK particularly well-placed to realise the benefits of the emerging digital society. These benefits have already been substantial, but they remain at risk. Protecting the benefits and minimising the risks requires reliable and robust cybersecurity, underpinned by a strong research and translation system.
Trust is essential for growing and maintaining participation in the digital society. Organisations earn trust by acting in a trustworthy manner: building systems that are reliable and secure, treating people, their privacy and their data with respect, and providing credible and comprehensible information to help people understand how secure they are.
Resilience, the ability to function, adapt, grow, learn and transform under stress or in the face of shocks, will help organisations deliver systems that are reliable and secure. Resilient organisations can better protect their customers, provide more useful products and services, and earn people’s trust.
Research and innovation in industry and academia will continue to make important contributions to creating this resilient and trusted digital environment. Research can illuminate how best to build, assess and improve digital systems, integrating insights from different disciplines, sectors and around the globe. It can also generate advances to help cybersecurity keep up with the continued evolution of cyber risks.
Translation of innovative ideas and approaches from research will create a strong supply of reliable, proven solutions to difficult to predict cybersecurity risks. This is best achieved by maximising the diversity and number of innovations that see the light of day as products.
Policy, practice and research will all need to adapt. The recommendations made in this report seek to set up a trustworthy, self-improving and resilient digital environment that can thrive in the face of unanticipated threats, and earn the trust people place in it.
Innovation and research will be particularly important to the UK’s economy as it establishes a new relationship with the EU. Cybersecurity delivers important economic benefits, both by underpinning the digital foundations of UK business and trade and also through innovation that feeds directly into growth. The findings of this report will be relevant regardless of how the UK’s relationship to the EU changes.
Headline recommendations
● Trust: Governments must commit to preserving the robustness of encryption, including end-to-end encryption, and promoting its widespread use. Encryption is a foundational security technology that is needed to build user trust, improve security standards and fully realise the benefits of digital systems.
● Resilience: Government should commission an independent review of the UK’s future cybersecurity needs, focused on the institutional structures needed to support resilient and trustworthy digital systems in the medium and longer term. A self-improving, resilient digital environment will need to be guided and governed by institutions that are transparent, expert and have a clear and widely-understood remit.
● Research: A step change in cybersecurity research and practice should be pursued; it will require a new approach to research, focused on identifying ambitious high-level goals and enabling excellent researchers to pursue those ambitions. This would build on the UK's existing strengths in many aspects of cybersecurity research and ultimately help build a resilient and trusted digital sector based on excellent research and world-class expertise.
● Translation: The UK should promote a free and unencumbered flow of cybersecurity ideas from research to practical use and support approaches that have public benefits beyond their short term financial return. The unanticipated nature of future cyber threats means that a diverse set of cybersecurity ideas and approaches will be needed to build resilience and adaptivity. Many of the most valuable ideas will have broad security benefits for the public, beyond any direct financial returns.

The Glow of Unwork? Issues of Portrayal in Networked Learning Research

In this paper, we suggest that portrayal of research is often undervalued and seen as ‘unwork’ (Galloway, 2012). Portrayal is often seen as an issue that is relatively straight forward by qualitative researchers, and invariably refers to putting the findings of the study together with excerpts from participants and usually, but not always, some interpretation. It tends to be seen as the means by which the researcher has chosen to position people and their perspectives, and it is imbued with a sense of not only positioning but also a contextual painting of a person in a particular way. Yet there are an array of issues and challenges about what portrayal can or might mean in digital spaces. In this paper we argue that researching education in a digital age provides greater or different opportunities to represent and portray data differently and suggest that these ways are underutilised. For example, for many researchers legitimacy comes through the use of participants’ voices in the form of quotations. However, we argue that this stance towards plausibility and legitimacy is problematic and needs to be reconsidered in terms of understanding differences in types of portrayal, recognizing how researchers position themselves in relation to portrayal, and understanding decision-making in relation to portrayal. We suggest that there need to be new perspectives about portrayal and concept, and ideas are provided that offer a different view. Three key recommendations are made: Portrayal should be reconceptualised as four overlapping concepts: mustering, folding, cartography, and portrayal. Adopting such an approach will enable audiences, researchers and other stakeholders to critique the assumptions that researchers on tour bring to portrayal and encourage reflexivity. Researchers on tour should highlight the temporal, mutable and shifting nature of portrayed research findings, emphasising the need for continued and varied research to inform understanding. There is a significant need for greater insight into the influence of portrayal, as well as the difference between representation and portrayal. Future studies should prioritise this, and ensure that portrayal is considered and critiqued from the outset.

Exploring How Well UK Coach Education Meets the Needs of Women Sports Coaches

Inclusive and equitable processes are important to the development of sports coaching. The aim of this study was to explore how well UK coach education meets the needs of women sports coaches in order to make recommendations to further enhance the engagement of, and support for, aspiring and existing women coaches. The national governing bodies (NGBs) of four sports (Cycling, Equestrian, Gymnastics and Rowing) volunteered to participate and semi-structured interviews using the tenants of Appreciative Inquiry (AI) within a Self Determination Theory (SDT) framework were undertaken with 23 coaches, eight coach educators and five NGB officers. The data themed into an analytic structure derived from SDT comprising ‘Autonomy: Freedom to coach’, ‘Coaching competence’, and ‘Relatedness and belonging’. The coaches perceived potential benefit from enhanced relatedness and belonging within their sport with the findings suggesting that NGBs should embrace coach-led decision making in terms of the developmental topics which are important and should adopt the development of competence, rather than assessing technical understanding, as the foundational principle of more inclusive coach education. Future research should investigate the impact of the inclusive practices which are recommended within this investigation such as the softening of the technocratic focus of formal coach education.

Chicken Run: A Chicken-Centred Design Research Project

Chicken Run, an experimental project still in development, sees designers and scientists working together to explore ideas to improve poultry welfare in commercial facilities, applying user-centred design to all key stakeholders: farmer, consumer and chicken. Exploring various aspects of the chicken’s journey from egg to plate, the process has allowed researchers to better understand their needs and to maximise joined-up positive impact. The paper describes the ongoing process where Initial proposals including perches, bales and an app to enable consumers to make the right chicken purchase choices have been developed and tested. Co-authored by leaders of the design and scientific communities involved in the project, the paper describes the issues, design methods used, as well as some of the learning from the cross-disciplinary process. It also provides an update on progress of selected design ideas that are currently being developed with a commercial poultry farm, drawing out the challenges and successes encountered.

Evaluation of Tottenham Thinking Space Pilot: Final Report. Research Report 11.

This reports summarises research that began in March 2014 and was completed in October 2015 by an experienced inter-disciplinary research team from the Centre for Social Justice and Change and Psycho-Social Research Group, School of Social Sciences, the University of East London (UEL) and included Dr Yang Li from the Centre for Geo-Information Studies, UEL, for the first phase of the study. Tottenham ‘Thinking Space’ (TTS) was a pilot therapeutic initiative based in local communities and delivered by the Tavistock & Portman NHS Foundation Trust and funded by the London Borough of Haringey Directorate of Public Health. TTS aimed to improve mental health and enable and empower local communities. TTS was situated within a mental health agenda that was integral to Haringey’s Health and Wellbeing Strategy 2012-2015 and aimed to encourage people to help themselves and each other and develop confident communities. On the one hand TTS was well-suited to this agenda, but, on the other, participants were resistant to, and were trying to free themselves from labelling that implied ‘mental health difficulties’. A total of 243 meetings were held and 351 people attended 1,716 times. The majority of participants attended four times or less, and 33 people attended between 5 and 10 times and 39 people attended over 10 times. Attending a small number of times does not necessarily mean that the attendee was not helped. Attendees reflected the ethnic diversity of Tottenham; 29 different ethnic groups attended. The opportunity to meet with people from different cultural backgrounds in a safe space was highly valued by attendees. Similarly, participants valued the wide age range represented and felt that they benefited from listening to inter-generational experiences. The majority of participants were women (72%) and they were instrumental in initiating further Thinking Spaces, topic specific meetings, the summer programme of activities for mothers and young children and training to meet their needs. The community development worker had a key role in implementing the initiative and sustaining its growth throughout the pilot period. We observed that TTS attracted those whose life experiences were marked by personal struggle and trauma. Many participants felt safe enough to disclose mental health difficulties (85% of those who completed a questionnaire). Participants also came seeking a stronger sense of community in their local area. Key features of the meetings are that they are democratic, non-judgemental, respectful, and focussed on encouraging everyone to listen and to try to understand. We found that the therapeutic method was put in place by high quality facilitators and health and personal outcomes for participants were consistent with those predicted by the underpinning psychoanalytical and systemic theories. Outcomes included a reduction in anxieties and improved personal and social functioning; approximately two thirds of those who completed a questionnaire felt better understood, felt more motivated and more hopeful for the future. The overwhelming majority of survey respondents also felt good about contributing to their community, said that they were more able to cooperate with others and accepting of other cultures, and had made new friends. Participants typically had a better understanding of their current situation and how to take positive action; of those who completed a questionnaire, over half felt more confident to seek support for a personal issue and to contact services. Members of TTS supported each other and instilled hope and build community-mindedness that reduced social isolation.

Stakeholder-led science: engaging resource managers to identify science needs for long-term management of floodplain conservation lands

Floodplains pose challenges to managers of conservation lands because of constantly changing interactions with their rivers. Although scientific knowledge and understanding of the dynamics and drivers of river-floodplain systems can provide guidance to floodplain managers, the scientific process often occurs in isolation from management. Further, communication barriers between scientists and managers can be obstacles to appropriate application of scientific knowledge. With the coproduction of science in mind, our objectives were the following: (1) to document management priorities of floodplain conservation lands, and (2) identify science needs required to better manage the identified management priorities under nonstationary conditions, i.e., climate change, through stakeholder queries and interactions. We conducted an online survey with 80 resource managers of floodplain conservation lands along the Upper and Middle Mississippi River and Lower Missouri River, USA, to evaluate management priority, management intensity, and available scientific information for management objectives and conservation targets. Management objectives with the least information available relative to priority included controlling invasive species, maintaining respectful relationships with neighbors, and managing native, nongame species. Conservation targets with the least information available to manage relative to management priority included pollinators, marsh birds, reptiles, and shore birds. A follow-up workshop and survey focused on clarifying science needs to achieve management objectives under nonstationary conditions. Managers agreed that metrics of inundation, including depth and extent of inundation, and frequency, duration, and timing of inundation would be the most useful metrics for management of floodplain conservation lands with multiple objectives. This assessment provides guidance for developing relevant and accessible science products to inform management of highly dynamic floodplain environments. Although the problems facing managers of these lands are complex, products focused on a small suite of inundation metrics were determined to be the most useful to guide the decision making process.

Curricular training report: clinical studies coordination in a clinical research organization vs an investigational site perspective

This report describes my experience of nine months as a trainee of a CRO (Eurotrials, Scientific Consultants), as well as a trainee of a clinical research site (Clinical Academic Center – Braga, Association). This document describes the European framework about clinical research and the Portuguese situation compared to similar countries. The activities developed during this internship are also described. These activities are divided in two phases. The first one occurred in Eurotrials, Scientific Consultants, a CRO specialized in clinical research and scientific advice. The first weeks were dedicated to intensive self-training needed to perform CTA tasks. These tasks included qualification, initiation and monitoring activities related to clinical trials, as well as the development of a quality management system. The second phase took place on 2CA-Braga, a clinical research center located in Hospital of Braga. Clinical studies coordination was the main focus of this second phase of my internship, as well as negotiation of clinical studies agreements. I had also the opportunity to participate in “1as Jornadas de Investigação Clínica e Inovação” (1st Clinical Investigation and Innovation Conference) organized by 2CA-Braga. Globally, this internship was a great opportunity to get knowledge and experience in the implementation and management of clinical trials, in a CRO and clinical research site perspectives. These two perspectives provided an interesting overview about the scientific needs of different players involved in clinical research. To conclude, this internship strengthened the knowledge acquired from my academic background, which make me able to face and overcome new challenges in the clinical research area.

bepress Launches Beta of Expert Gallery to Promote Research Expertise

We at bepress are excited to announce the beta launch of the Expert Gallery, a new product for institutions eager to highlight the rich expertise of their faculty. The Expert Gallery facilitates the valuable work of connecting an institution’s researchers with opportunities that might otherwise be missed. Groups such as Marketing and Communications and the Office of Research can use the product to better land funding opportunities, speaking engagements, and professional collaborations for top faculty members. The Expert Gallery is designed to let stakeholders within and outside of the institution find researchers by interest, skill set, and research emphasis: simple searching and browsing, along with the flexibility to create and display custom galleries, helps facilitate targeted discovery for experts on campus. A built-in, rich toolset lets institutions organize, manage, and connect their researchers to the right opportunities and interested parties outside the institution. While most expert galleries contain just biographical information and a bibliography, integration of the bepress Expert Gallery with SelectedWorks profiles lets researchers prove their expertise with a full picture of their scholarly research, including published and unpublished works, datasets, teaching materials, and media appearances. Launching the Expert Gallery as a new product reflects an important expansion of bepress’s mission. For years we’ve helped libraries reclaim their central role through providing services across campus. We’ve especially focused on supporting the library in its important efforts to promote the institution through the scholarship it produces. With the Expert Gallery, the library can meet its campus’s needs to go beyond demonstrating the value of its scholarship. Now the library can offer a way to promote the institution through the rich skills of the people who make it unique. We plan to continue on this path of helping institutions maximize the impact of people as well as their people’s scholarship. In early 2017 we will launch a suite of services that includes SelectedWorks, the Expert Gallery, and a set of faculty reporting and analytics tools.

Do Editorial Policies Support Ethical Research? A Thematic Text Analysis of Author Instructions in Psychiatry Journals

Introduction: According to the Declaration of Helsinki and other guidelines, clinical studies should be approved by a research ethics committee and seek valid informed consent from the participants. Editors of medical journals are encouraged by the ICMJE and COPE to include requirements for these principles in the journal's instructions for authors. This study assessed the editorial policies of psychiatry journals regarding ethics review and informed consent. Methods and Findings: The information given on ethics review and informed consent and the mentioning of the ICMJE and COPE recommendations were assessed within author's instructions and online submission procedures of all 123 eligible psychiatry journals. While 54% and 58% of editorial policies required ethics review and informed consent, only 14% and 19% demanded the reporting of these issues in the manuscript. The TOP-10 psychiatry journals (ranked by impact factor) performed similarly in this regard. Conclusions: Only every second psychiatry journal adheres to the ICMJE's recommendation to inform authors about requirements for informed consent and ethics review. Furthermore, we argue that even the ICMJE's recommendations in this regard are insufficient, at least for ethically challenging clinical trials. At the same time, ideal scientific design sometimes even needs to be compromised for ethical reasons. We suggest that features of clinical studies that make them morally controversial, but not necessarily unethical, are analogous to methodological limitations and should thus be reported explicitly. Editorial policies as well as reporting guidelines such as CONSORT should be extended to support a meaningful reporting of ethical research.