Let It Out (LIO) study: protocol for a mixed-methods study to optimise the design and assess the feasibility of an online emotional disclosure-based intervention in UK hospices

INTRODUCTION: The current COVID-19 pandemic has forced hospices to look for more ways to support people remotely, including psychological support. Emotional disclosure-based interventions hold potential as a way of providing support remotely. However, evidence of their efficacy in people with terminal illness is mixed. Reviews have highlighted this may be due to interventions not being tailored to the unique needs of this population. In response to this, we are developing Let It Out (LIO), an online, self-guided emotional disclosure-based intervention tailored for people living with terminal illness. AIMS: The primary objective of the study is to optimise the design of the LIO intervention. Secondary objectives include assessing its acceptability and feasibility; exploring potential impact on well-being; identifying potential adverse effects; and informing choice of outcome measures for potential future evaluation. METHODS AND ANALYSIS: A single arm, mixed-methods, multisite, longitudinal study. Up to 40 people living with a terminal illness under the care of hospices in England and Scotland will receive the online LIO intervention. LIO consists of 3, self-guided expression sessions over 2 weeks. The primary outcome measures are (1) a structured feedback form completed by participants after the final expression session; and (2) semi-structured interviews and focus groups with ≤15 patient participants, ≤30 hospice staff and ≤15 informal carers. These quantitative and qualitative data will be triangulated via process evaluation to inform optimisation of the intervention design. Secondary outcome measures include validated measures of physical and psychological health collected at baseline and after the final expression session (immediately, 1, 4 and 8 weeks after); and data on recruitment, retention and fidelity. ETHICS AND DISSEMINATION: The study is approved by the University College London Research Ethics Committee (reference: 15281/002). The findings will be shared through peer-reviewed scientific journals and conferences, and traditional, online and social media platforms

Mapping and understanding the decision-making process for providing nutrition and hydration to people living with dementia: a systematic review

BACKGROUND: This systematic review aimed to explore the process of decision-making for nutrition and hydration for people living with dementia from the perspectives and experiences of all involved. METHODS: We searched CINAHL, the Cochrane Library, EMBASE, MEDLINE and PsycINFO databases. Search terms were related to dementia, decision-making, nutrition and hydration. Qualitative, quantitative and case studies that focused on decision-making about nutrition and hydration for people living with dementia were included. The CASP and Murad tools were used to appraise the quality of included studies. Data extraction was guided by the Interprofessional Shared Decision Making (IP-SDM) model. We conducted a narrative synthesis using thematic analysis. PROSPERO registration number CRD42019131497. RESULTS: Forty-five studies were included (20 qualitative, 15 quantitative and 10 case studies), comprising data from 17 countries and 6020 patients, family caregivers and practitioners. The studies covered a range of decisions from managing oral feeding to the use of tube feeding. We found that decisions about nutrition and hydration for people living with dementia were generally too complex to be mapped onto the precise linear steps of the existing decision-making model. Decision-making processes around feeding for people living with dementia were largely influenced by medical evidence, personal values, cultures and organizational routine. Although the process involved multiple people, family caregivers and non-physician practitioners were often excluded in making a final decision. Upon disagreement, nutrition interventions were sometimes delivered with conflicting feelings concealed by family caregivers or practitioners. Most conflicts and negative feelings were resolved by good relationship, honest communication, multidisciplinary team meetings and renegotiation. CONCLUSIONS: The decision-making process regarding nutrition and hydration for people living with dementia does not follow a linear process. It needs an informed, value-sensitive, and collaborative process. However, it often characterized by unclear procedures and with a lack of support. Decisional support is needed and should be approached in a shared and stepwise manner

Changing from face-to-face to virtual meetings due to the COVID-19 pandemic: Protocol for a mixed-methods study exploring the impact on cancer multidisciplinary team (MDT) meetings

INTRODUCTION: In the UK, the National Cancer Plan (2000) requires every cancer patient’s care to be reviewed by a multidisciplinary team (MDT). Since the introduction of these guidelines, MDTs have faced escalating demands with increasing numbers and complexity of cases. The COVID-19 pandemic has presented MDTs with the challenge of running MDT meetings virtually rather than face-to-face. This study aims to explore how the change from face-to-face to virtual MDT meetings during the COVID-19 pandemic may have impacted the effectiveness of decision-making in cancer MDT meetings and to make recommendations to improve future cancer MDT working based on the findings. METHODS AND ANALYSIS: A mixed-methods study with three parallel phases: Semistructured remote qualitative interviews with ≤40 cancer MDT members. A national cross-sectional online survey of cancer MDT members in England, using a validated questionnaire with both multiple-choice and free-text questions. Live observations of ≥6 virtual/hybrid cancer MDT meetings at four NHS Trusts. Participants will be recruited from Cancer Alliances in England. Data collection tools have been developed in consultation with stakeholders, based on a conceptual framework devised from decision-making models and MDT guidelines. Quantitative data will be summarised descriptively, and χ2 tests run to explore associations. Qualitative data will be analysed using applied thematic analysis. Using a convergent design, mixed-methods data will be triangulated guided by the conceptual framework. The study has been approved by NHS Research Ethics Committee (London—Hampstead) (22/HRA/0177). The results will be shared through peer-reviewed journals and academic conferences. A report summarising key findings will be used to develop a resource pack for MDTs to translate learnings from this study into improved effectiveness of virtual MDT meetings. The study has been registered on the Open Science Framework (https://doi.org/10.17605/OSF.IO/D2NHW)

Yeast genomic expression patterns in response to low-shear modeled microgravity

The low-shear microgravity environment, modeled by rotating suspension culture bioreactors called high aspect ratio vessels (HARVs), allows investigation in ground-based studies of the effects of microgravity on eukaryotic cells and provides insights into the impact of space flight on cellular physiology. We have previously demonstrated that low-shear modeled microgravity (LSMMG) causes significant phenotypic changes of a select group of Saccharomyces cerevisiae genes associated with the establishment of cell polarity, bipolar budding, and cell separation. However, the mechanisms cells utilize to sense and respond to microgravity and the fundamental gene expression changes that occur are largely unknown. In this study, we examined the global transcriptional response of yeast cells grown under LSMMG conditions using DNA microarray analysis in order to determine if exposure to LSMMG results in changes in gene expression. LSMMG differentially changed the expression of a significant number of genes (1372) when yeast cells were cultured for either five generations or twenty-five generations in HARVs, as compared to cells grown under identical conditions in normal gravity. We identified genes in cell wall integrity signaling pathways containing MAP kinase cascades that may provide clues to novel physiological responses of eukaryotic cells to the external stress of a low-shear modeled microgravity environment. A comparison of the microgravity response to other environmental stress response (ESR) genes showed that 26% of the genes that respond significantly to LSMMG are involved in a general environmental stress response, while 74% of the genes may represent a unique transcriptional response to microgravity. In addition, we found changes in genes involved in budding, cell polarity establishment, and cell separation that validate our hypothesis that phenotypic changes observed in cells grown in microgravity are reflected in genome-wide changes. This study documents a considerable response to yeast cell growth in low-shear modeled microgravity that is evident, at least in part, by changes in gene expression. Notably, we identified genes that are involved in cell signaling pathways that allow cells to detect environmental changes, to respond within the cell, and to change accordingly, as well as genes of unknown function that may have a unique transcriptional response to microgravity. We also uncovered significant changes in the expression of many genes involved in cell polarization and bud formation that correlate well with the phenotypic effects observed in yeast cells when grown under similar conditions. These results are noteworthy as they have implications for human space flight

Access to and adequacy of psychological services for adult patients in UK hospices: a national, cross-sectional survey

Abstract Background Providing psychological support to people living with terminal illness is a fundamental part of hospice care. Recent research on delivery of psychological services in hospices in the United Kingdom (UK) on a national level, including inequalities or variation in practice, is limited. A nationwide survey will highlight any differences in provision and in doing so help focus future research and inform best practice both within the UK, and internationally. The specific objectives of this survey are to (1) chart the types of psychological support available to adult patients in hospices in the UK in line with the National Institute for Health and Care Excellence model; (2) explore how services are organised; and (3) gather service perspectives on adequacy of care, and facilitators and barriers to appropriate practice. Methods A cross-sectional online survey emailed to adult hospices in the UK in November–December 2019. One staff member involved in the delivery and/or organisation of psychological support was invited to participate per hospice. Of 193 invited hospices, 116 took part. Results Sixteen percent rated their hospice psychological service as wholly adequate. The majority reported that services can access specialist professionals, but many relied on external referrals. Barriers to best practice included funding and staff capacity; facilitators included clear referral structures, audit and appropriate needs and outcome assessments. Conclusions Access to psychological professionals has improved since the last survey 15 years ago, but the majority of responders felt their overall service was not wholly adequate. Basic emotional support is largely felt to be sufficient, but our results indicate a need for improvements in access to more specialist care. Partnerships with external mental health services may be key. Our findings highlight core facilitators and barriers to providing good psychological care at the end of life that should be considered by services both within the UK and on an international level. </jats:sec

A systematic review on the qualitative experiences of people living with lung cancer in rural areas.

PURPOSE: To synthesize the qualitative literature exploring the experiences of people living with lung cancer in rural areas. METHODS: Searches were performed in MEDLINE, CINAHL, and PsycINFO. Articles were screened independently by two reviewers against pre-determined eligibility criteria. Data were synthesized using Thomas and Harden's framework for the thematic synthesis of qualitative research. The CASP qualitative checklist was used for quality assessment and the review was reported in accordance with the ENTREQ and PRISMA checklists. RESULTS: Nine articles were included, from which five themes were identified: (1) diagnosis and treatment pathways, (2) travel and financial burden, (3) communication and information, (4) experiences of interacting with healthcare professionals, (5) symptoms and health-seeking behaviors. Lung cancer diagnosis was unexpected for some with several reporting treatment delays and long wait times regarding diagnosis and treatment. Accessing treatment was perceived as challenging and time-consuming due to distance and financial stress. Inadequate communication of information from healthcare professionals was a common concern expressed by rural people living with lung cancer who also conveyed dissatisfaction with their healthcare professionals. Some were reluctant to seek help due to geographical distance and sociocultural factors whilst others found it challenging to identify symptoms due to comorbidities. CONCLUSIONS: This review provides a deeper understanding of the challenges faced by people with lung cancer in rural settings, through which future researchers can begin to develop tailored support to address the existing disparities that affect this population

Exploring the attitudes of students undertaking sports degrees towards online international learning

Abstract Aims: There is an increased focus on the internationalisation of the learning experiences of university students1. One way this can be achieved is through ‘virtual internationalisation’2, which can be promoted through the use of Online International Learning (OIL) programmes. This article on sport pedagogy investigates the attitudes of sport students to such a programme. Methods: This article uses quantitative and qualitative methods. 63 students completed a survey and wrote reflective reports. Data was collected from a survey of 16 targeted questions addressing the attitudes of students towards the programme. Students also wrote reflective reports on their experiences, allowing for qualitative responses to be analysed. Results: 62% of students surveyed found the internationalised module to have been a worthwhile experience in terms of learning new skills and working with a partner from an institution based in another continent. 65% suggested that they learned skills on the internationalised module they would use again in education and in future employment. Students from European Union countries gave high rates of positive feedback. 100% reported that the module was a worthwhile experience, compared to 60% of UK students and 38% of international students from outside the European Union. Conclusion: 62% of students surveyed stated that they learned new skills, and there was a perceived value to the programme in terms of enhancing employment prospects. Virtual mobilities projects offer a possible method for tutors to give students international experiences, which is important as sport is now a globalised industry

Emotional disclosure as a therapeutic intervention in palliative care: a scoping review protocol

Introduction Emotional disclosure (ED) is a term used to describe the therapeutic expression of emotion. ED underlies a variety of therapies aimed at improving well-being for various populations, including people with palliative-stage disease and their family carers. Systematic reviews of ED-based psychotherapy have largely focused on expressive writing as a way of generating ED. However, heterogeneity in intervention format and outcome measures has made it difficult to analyse efficacy. There is also debate about the mechanisms proposed to explain the potential effects of ED. We present a scoping review protocol to develop a taxonomy of ED-based interventions to identify and categorise the spectrum of interventions that could be classified under the umbrella term of ‘emotional disclosure’ in the palliative care setting. By mapping these to associated treatment objectives, outcome measures and explanatory frameworks, the review will inform future efforts to design and evaluate ED-based therapies in this population. Methods and analysis The review will be guided by Arksey and O’Malley’s five-stage scoping review framework and Levac’s extension. The following electronic databases will be searched from database inception: CENTRAL, the Cumulative Index to Nursing and Allied Health Literature (CINAHL), PsycINFO, Scopus, Web of Science and MEDLINE. We will include peer-reviewed studies and reviews. We will also check grey literature, including clinical trial registers, conference proceedings and reference lists, as well as contacting researchers. Articles will be screened by at least two independent reviewers and data charted using an extraction form developed for this review. Results will be analysed thematically to create a taxonomy of interventions, outcome measures and theoretical frameworks. Ethics and dissemination This review does not require ethical approval as it is a secondary analysis of preexisting, published data. The results will inform future research in the development of ED-based interventions and evaluation of their efficacy in the palliative care setting. We will disseminate findings through peerreviewed journals

Why increased social presence through web videoconferencing does not automatically lead to improved learning

The Community of Inquiry (CoI) model provides a well-researched theoretical framework to understand how learners and teachers interact and learn together in computer-supported collaborative learning (CSCL). Most CoI research focuses on asynchronous learning. However, with the arrival of easy-to-use synchronous communication tools the relevance of the CoI model needs verification for these new environments. Synchronous communication is (assumed to be) superior in establishing discourse due to the ability to express immediate feedback, intonation, body language, and thus the affordance to increase social presence. In a quasi-experimental design, this research analysed whether increased social presence led to (perceived) improved learning satisfaction and an increased pass rate. That is, the learning experiences of 147 students using discussion forums (2005‑2007) and 256 students using both discussion forums and web-videoconferencing (2008‑2011) over seven consecutive summers were compared using the self-developed Students Evaluation of Online Remedial Education Experience questionnaire. Results indicate that students in the web-videoconference design were not more satisfied about their learning experiences, except for the clarity of goals and tasks. Furthermore, in the four years of using the web-videoconference design, a lower pass rate was found compared to the discussion forum-only designs in the years before. Although web-videoconferencing provides an experience that seems more conducive to social presence, more research is needed into how to effectively use synchronous communication in e-learning