Can Exposure to Online Conversations About Death and Dying Influence Death Competence? An Exploratory Study Within an Australian Massive Open Online Course

© 2018, The Author(s) 2018. A Massive Open Online Course, Dying2Learn, was designed to foster community death conversations and strengthen community awareness of palliative care and death as a normal process. This exploratory study used a pre–post prospective design to determine if participation in Dying2Learn and exposure to online conversations about death and dying resulted in any significant influence on death competence in 134 participants who completed the Coping-with-Death-Scale both at the beginning and end of the course in 2016. Death competence refers to a range of attitudes and capabilities people have for dealing with death. Results at the end of the course indicated that engagement in Dying2Learn led to significant improvements in death competence scores over time (medium-to-large effect size). The positive impact was greater for those who completed more of the course, and effectiveness did not depend on sociodemographic characteristics. In conclusion, this study found that an online learning platform in the form of a Massive Open Online Course could engage community members in meaningful social discussion about death and dying, and that exposure to these conversations was beneficial for all participants regardless of previous exposure to death. Further exploration is required to determine whether this change in death competence will have an impact on participant’s behavior in the community regarding death conversations and preparedness

“I want to die in my sleep”-how people think about death, choice, and control: Findings from a Massive Open Online Course

© Annals of Palliative Medicine. Background: Complex social and ethical debates about voluntary assisted dying (euthanasia), palliative care, and advance care planning are presently being worked through in many developed countries, and the policy implications of these discussions for palliative care are potentially very significant. However, community attitudes to death and dying are complex, multilayered, and contain many mixed messages. Methods: Participants posted comments in a Massive Open Online Course (MOOC) on death and dying, entitled Dying2Learn. This provided an opportunity to explore societal and personal attitudes to wishes and beliefs around death and dying. For one activity in the MOOC, participants responded to a question asking them about “the best way to go”. Results: Responses were subjected to thematic analysis, during which they were coded for conceptual categories. This analysis showed how acceptance of death as a natural and normal process, and as a shared event that affects a whole social network, may nonetheless be accompanied by deep reluctance to address the physical process of dying (i.e., “avoidant acceptance”). Conclusions: Our findings highlighted a desire for choice and control in relation to dying, which is a common element in discussions of both advance care planning and palliative care. This same focus may contribute to a perception that voluntary assisted dying/euthanasia is a necessary strategy for ensuring that people have control over their dying process. We discuss the paradox of individuals wanting to have control whilst preferring not to know that they are dying

The contribution of a MOOC to community discussions around death and dying

© 2018 The Author(s). Background: Advances in medicine have helped many to live longer lives and to be able to meet health challenges. However death rates are anticipated to increase given the ageing population and chronic disease progression. Being able to talk about death is seen to be important in normalising death as part of life and supporting preparedness for death. Massive Open Online Courses (MOOCs) provide opportunities for the community to engage in collaborative learning. A 5 week MOOC was developed covering four main topics (language and humour, representations of death, medicalisation of dying, and digital dying) aiming: To enable participants to openly and supportively discuss and learn about issues around living, death and dying, To explore the normally unheard opinions and views of Australians around death and dying, and To determine what effect online learning and discussions offered through the MOOC had on participants' feelings and attitudes towards death and dying. Methods: Data was captured on engagement rates in the various MOOC activities. Death Attitudes were measured by five items representing the MOOC's learning objectives and completed at enrolment and conclusion. MOOC Satisfaction was measured with six items at the end of the MOOC. Descriptive statistics were produced for each variable and Chi-Square Tests of Independence assessed the extent of the relationship between categorical variables. Socio-demographic variables were examined as predictors of the outcome variables of MOOC engagement, MOOC satisfaction, and death attitudes. Ethical approval was received from Flinders University Social and Behavioural Research Ethics Committee (Project No. 7247). Results: One thousand one hundred fifty six people enrolled in the Dying2Learn MOOC with 895 participating in some way. Enrolees were primarily female (92.1%). Age ranged from 16 to 84 (mean = 49.5, SD = 12.3). MOOC satisfaction scores were high. Responses to the experience of participating in the MOOC were very positive, with mean scores ranging from 4.3 to 4.6 (aligning with agreement and strong agreement to statements on the value of participating). Death Attitudes were positive at commencement but increased significantly following participation. Conclusions: The Dying2Learn MOOC provided an environment that enabled open and supportive discussion around death and dying and influenced attitudinal change

Lessons Learned from the Dying2Learn MOOC: Pedagogy, Platforms and Partnerships

(1) Background: Massive Open Online Courses (MOOCs) are becoming more commonplace in the delivery of free online education and a Dying2Learn MOOC was offered by a team at Palliative and Supportive Services, Flinders University, South Australia; (2) Methods: Working with the OpenLearning platform developer, a research study and MOOC evaluation were embedded in the course, and content was delivered in innovative ways without compromising pedagogical approaches; (3) Results: This MOOC provided the facilitators with the opportunity to view education as an intervention, with testing undertaken, including measuring attitudinal change. Research, clinical and community partnerships were developed or reaffirmed and the value of ongoing partnerships with developers in creating platforms and tools that can expand the options for online learning is highlighted. Opportunities for future health professional and consumer education were also explored; (4) Conclusion: MOOCs can provide innovative opportunities to redesign educational approaches, which can be achieved by working with new technologies and with platform developers, while still adhering to pedagogical principles

Evaluation of an online toolkit for carers of people with life-limiting illness at the end-of-life: health professionals’ perspectives

Carers of people with a life-limiting illness report unmet information, practical, and emotional support needs, and are often unaware of services available to help improve preparedness, wellbeing, and reduce strain. CarerHelp is the first e-health toolkit that focuses on the information and support needs of carers of people with a life-limiting illness at the end-of-life, using a pathway approach. This study investigated the usefulness of CarerHelp, from the perspective of health professionals who care for these people. Through a 10-min online survey, health professionals provided feedback about their user experience and perceived usefulness of the website. Their expert opinion was sought to ascertain whether CarerHelp could increase carers’ preparedness and confidence to support the person for whom they are caring and thereby improve carers’ own psychological wellbeing. Health professionals also evaluated whether CarerHelp adequately raised awareness of support services available. CarerHelp was perceived as a useful resource for increasing preparedness for the caring role, including physical tasks and emotional support. Health professionals reported that CarerHelp would increase carers’ knowledge of services, confidence to care and ability for self-care. Health professionals endorsed CarerHelp as a useful information source, guide for support, and would promote CarerHelp to clients and their families

Words describing feelings about death: A comparison of sentiment for self and others and changes over time

Understanding public attitudes towards death is needed to inform health policies to foster community death awareness and preparedness. Linguistic sentiment analysis of how people describe their feelings about death can add to knowledge gained from traditional self-reports. This study provided the first description of emotive attitudes expressed towards death utilising textual sentiment analysis for the dimensions of valence, arousal and dominance. A linguistic lexicon of sentiment norms was applied to activities conducted in an online course for the general-public designed to generate discussion about death. We analysed the sentiment of words people chose to describe feelings about death, for themselves, for perceptions of the feelings of ‘others’, and for longitudinal changes over the time-period of exposure to a course about death (n = 1491). The results demonstrated that sadness pervades affective responses to death, and that inevitability, peace, and fear were also frequent reactions. However, words chosen to represent perceptions of others’ feelings towards death suggested that participants perceived others as feeling more negative about death than they do themselves. Analysis of valence, arousal and dominance dimensions of sentiment pre-to-post course participation demonstrated that participants chose significantly happier (more positive) valence words, less arousing (calmer) words, and more dominant (in-control) words to express their feelings about death by the course end. This suggests that the course may have been helpful in participants becoming more emotionally accepting in their feelings and attitude towards death. Furthermore, the change over time appeared greater for younger participants, who showed more increase in the dominance (power/control) and pleasantness (valence) in words chosen at course completion. Sentiment analysis of words to describe death usefully extended our understanding of community death attitudes and emotions. Future application of sentiment analysis to other related areas of health policy interest such as attitudes towards Advance Care Planning and palliative care may prove fruitful

Allied Health Clinicians' Understanding of Palliative Care as It Relates to Patients, Caregivers, and Health Clinicians: A Cross-Sectional Survey

© 2019 Journal of Allied Health and Association of Schools of Allied Health Professionals. This author accepted manuscript is made available following 12 month embargo from date of publication (June 2019) in accordance with the publisher’s archiving policyPURPOSE: The scope of hospice or palliative care has expanded since its inception, which has significant ramifications for the AH workforce. This study sought to elicit allied health (AH) clinicians' understanding and views about palliative care and its relevance to their clinical practice and to identify their educational needs. Results from analysis of free text survey responses to a single openended question from a larger survey are presented. METHODS: An online survey was distributed to AH clinicians via email lists for the CareSearch Allied Health Hub, Allied Health Professions Australia, and other groups. Descriptive statistics and content analysis of free text responses were used to analyse the data. RESULTS: A total of 217 AH clinicians responded to an email survey and 187 useable responses were analysed. Four themes were identified: 1) palliative care employs a client-centred model of care, 2) acknowledgement of living whilst dying, 3) interdisciplinary palliative care interventions provide active care in a range of domains, and 4) characteristics of palliative care teams and settings. CONCLUSION: AH clinicians plan an active role in physical, social, and psycho-spiritual care of palliative care patients and caregivers. Burgeoning numbers of palliative care patients in nonspecialist palliative care settings require AH clinicians to develop skills and competencies to work with people who have advanced disease

The trajectory of functional decline over the last 4 months of life in a palliative care population: A prospective, consecutive cohort study

This article may be used for non-commercial purposes in accordance with Wiley Terms and Conditions for selfarchiving. © The Author(s) 2019Background: Understanding current patterns of functional decline will inform patient care and has health service and resource implications. Aim: This prospective consecutive cohort study aims to map the shape of functional decline trajectories at the end of life by diagnosis. Design: Changes in functional status were measured using the Australia-modified Karnofsky Performance Status Scale. Segmented regression was used to identify time points prior to death associated with significant changes in the slope of functional decline for each diagnostic cohort. Sensitivity analyses explored the impact of severe symptoms and late referrals, age and sex. Setting/participants: In all, 115 specialist palliative care services submit prospectively collected patient data to the national Palliative Care Outcomes Collaboration across Australia. Data on 55,954 patients who died in the care of these services between 1 January 2013 and 31 December 2015 were included. Results: Two simplified functional decline trajectories were identified in the last 4 months of life. Trajectory 1 has an almost uniform slow decline until the last 14 days of life when function declines more rapidly. Trajectory 2 has a flatter more stable trajectory with greater functional impairment at 120 days before death, followed by a more rapid decline in the last 2 weeks of life. The most rapid rate of decline occurs in the last 2 weeks of life for all cohorts. Conclusions: Two simplified trajectories of functional decline in the last 4 months of life were identified for five patient cohorts. Both trajectories present opportunities to plan for responsive healthcare that will support patients and families

Tomato Functional Genomics Database: a comprehensive resource and analysis package for tomato functional genomics

Tomato Functional Genomics Database (TFGD) provides a comprehensive resource to store, query, mine, analyze, visualize and integrate large-scale tomato functional genomics data sets. The database is functionally expanded from the previously described Tomato Expression Database by including metabolite profiles as well as large-scale tomato small RNA (sRNA) data sets. Computational pipelines have been developed to process microarray, metabolite and sRNA data sets archived in the database, respectively, and TFGD provides downloads of all the analyzed results. TFGD is also designed to enable users to easily retrieve biologically important information through a set of efficient query interfaces and analysis tools, including improved array probe annotations as well as tools to identify co-expressed genes, significantly affected biological processes and biochemical pathways from gene expression data sets and miRNA targets, and to integrate transcript and metabolite profiles, and sRNA and mRNA sequences. The suite of tools and interfaces in TFGD allow intelligent data mining of recently released and continually expanding large-scale tomato functional genomics data sets. TFGD is available at http://ted.bti.cornell.edu