Wendy Moncur

Does the Internet Change How We Die and Mourn? Overview and Analysis

The article outlines the issues that the internet presents to death studies. Part 1 describes a range of online practices that may affect dying, the funeral, grief and memorialization, inheritance and archaeology; it also summarizes the kinds of research that have been done in these fields. Part 2 argues that these new online practices have implications for, and may be illuminated by, key concepts in death studies: the sequestration (or separation from everyday life) of death and dying, disenfranchisement of grief, private grief, social death, illness and grief narratives, continuing bonds with the dead, and the presence of the dead in society. In particular, social network sites can bring dying and grieving out of both the private and public realms and into the everyday life of social networks beyond the immediate family, and provide an audience for once private communications with the dead.

Situational Ethics: Re-thinking Approaches to Formal Ethics Requirements for Human-Computer Interaction

Most Human-Computer Interaction (HCI) researchers are accustomed to the process of formal ethics review for their evaluation or field trial protocol. Although this process varies by country, the underlying principles are universal. While this process is often a formality, for field research or lab-based studies with vulnerable users, formal ethics requirements can be challenging to navigate -- a common occurrence in the social sciences; yet, in many cases, foreign to HCI researchers. Nevertheless, with the increase in new areas of research such as mobile technologies for marginalized populations or assistive technologies, this is a current reality. In this paper we present our experiences and challenges in conducting several studies that evaluate interactive systems in difficult settings, from the perspective of the ethics process. Based on these, we draft recommendations for mitigating the effect of such challenges to the ethical conduct of research. We then issue a call for interaction researchers, together with policy makers, to refine existing ethics guidelines and protocols in order to more accurately capture the particularities of such field-based evaluations, qualitative studies, challenging lab-based evaluations, and ethnographic observations.

From death to final disposition: roles of technology in the post-mortem interval

In this paper, we describe collaborative processes and stakeholders involved in the period from when a person dies until they are laid to rest: the funeral, final disposition of the body, and (in some circumstances) victim identification. The rich mixture of technologies currently deployed during this brief period are categorized and critically analyzed. We then reflect on the implications of our findings, both for the design of technology that takes the end of life into account, and for the wider HCI community.

An emergent framework for digital memorials

Memorialization is a ubiquitous human practice, which is increasingly intersecting with our digital lives. It is becoming ever more commonplace to see discussions and examples of digital memorials in research literature, technology shows and art galleries. However, the design space for digital memorials has, to date, been little explored. In this paper, we propose an emergent framework for digital memorials, based around notions of actors, inputs, form and message. The framework is grounded in examples of current memorialization practice, and situated within a contextual understanding of memorials as an emergent digital phenomenon within a networked society. In detailing the framework we highlight features of the design space that can be exploited in the development of bespoke memorial technologies, and identify potential areas of future interest that this framework brings to the fore, such as HCIs engagement with critical concepts of the postself and temporality.

The Role of Digital Technologies During Relationship Breakdowns

Relationship breakdowns are undoubtedly difficult. Access to and use of technology can exacerbate the situation. In our networked society, shared lives generate vast amounts of shared digital data which can be difficult to untangle, whilst social media can provide an outlet to emotions that can take a public and often persistent form. In this paper, we report on a qualitative study that considered the role of technology in the process of a relationship breaking down. Four main themes emerged in our findings: communicating about the separation, change in social status, shared digital assets, and moving on. Opportunities for design are identified in reducing misunderstandings via CMCs, enhancing social media, supporting intimacy in distributed families, and refining service provision.

Ethical Encounters in Human-Computer Interaction

In the HCI community, there is growing recognition that a reflective and empathetic approach is needed to conduct ethical research in sensitive settings with people who might be considered vulnerable or marginalized. At our CHI 2015 workshop on ethical encounters, researchers shared personal stories of the challenges and tensions they have faced when conducting HCI research in complex settings such as hospitals, with young mental health patients, in schools for children with disabilities, and with homeless people. These research contexts can present significant challenges for HCI researchers who would not typically receive the training that other professionals working in these environments would normally receive. From our discussions with attendees at the CHI 2015 workshop, we identified a number of ethical issues that researchers are grappling with. In this follow-up workshop we aim to build on the lessons learned and to generate pragmatic but sensitive solutions to manage complex ethical issues for HCI researchers working in challenging settings.

The Accuracy and Reliability of Crowdsource Annotations of Digital Retinal Images

Purpose Crowdsourcing is based on outsourcing computationally intensive tasks to numerous individuals in the online community who have no formal training. Our aim was to develop a novel online tool designed to facilitate large-scale annotation of digital retinal images, and to assess the accuracy of crowdsource grading using this tool, comparing it to expert classification. Methods We used 100 retinal fundus photograph images with predetermined disease criteria selected by two experts from a large cohort study. The Amazon Mechanical Turk Web platform was used to drive traffic to our site so anonymous workers could perform a classification and annotation task of the fundus photographs in our dataset after a short training exercise. Three groups were assessed: masters only, nonmasters only and nonmasters with compulsory training. We calculated the sensitivity, specificity, and area under the curve (AUC) of receiver operating characteristic (ROC) plots for all classifications compared to expert grading, and used the Dice coefficient and consensus threshold to assess annotation accuracy. Results In total, we received 5389 annotations for 84 images (excluding 16 training images) in 2 weeks. A specificity and sensitivity of 71% (95% confidence interval [CI], 69%–74%) and 87% (95% CI, 86%–88%) was achieved for all classifications. The AUC in this study for all classifications combined was 0.93 (95% CI, 0.91–0.96). For image annotation, a maximal Dice coefficient (∼0.6) was achieved with a consensus threshold of 0.25. Conclusions This study supports the hypothesis that annotation of abnormalities in retinal images by ophthalmologically naive individuals is comparable to expert annotation. The highest AUC and agreement with expert annotation was achieved in the nonmasters with compulsory training group. Translational Relevance The use of crowdsourcing as a technique for retinal image analysis may be comparable to expert graders and has the potential to deliver timely, accurate, and cost-effective image analysis.

The development and evaluation of an emotional support algorithm for carers

Carers - people who provide regular support for a friend or relative who could not manage without them - frequently report high levels of stress. Good emotional support could help relieve this stress. This study uses seven scenarios that depict different types of stress and acquires emotional support messages for them. We then categorize and evaluate the emotional support for different types of stress. We found that telling the carer they are appreciated and offering support are the best types of emotional support. Additionally, we found that how well a supporter sympathises with a situation affects the type of support they consider suitable. We describe and evaluate an algorithm that selects different categories of support to be used by an intelligent virtual agent to provide emotional support to carers experiencing different types of stress.

Invoking emotional support in a health crisis.

This dissertation research explores the invocation of emotional support from friends and family for parents who have a baby in a Neonatal Intensive Care Unit, through the use of textual summaries of clinical and non-clinical data.

Opportunities and challenges of the digital lifespan: views of service providers and citizens in the UK

ABSTRACT Information about UK citizens’ use of digital technologies is often expressed in statistics – x% lack Internet access; y% get online to engage in online banking, update social media sites, or participate in online auctions. There are many social implications to digital technology use, however – individuals may communicate online as a major way to stay in touch with friends and family, and as Internet access rises and government and public sector budgets shrink, online services become an increasingly attractive way for government and public sector service providers to communicate with citizens. This paper presents selected results of an exploratory study designed to investigate the digital personhood of UK citizens through interviews with participants at three life transitions: leaving secondary school, becoming a parent, and retiring from work. Digital personhood in this paper implies identity information online, and some interaction with others around that information. We then report on our presentation of a selection of these results to thirteen stakeholders who represented UK government departments, public sector organisations, and industry. We found that citizen and stakeholder concerns were quite different, especially at the new parent life transition, and that stakeholders tended to underestimate the willingness and ability of citizens to become involved online with the government and public sector, and overestimate citizens’ vulnerability online. Future research should investigate practical strategies for increasing communication between stakeholders and citizens, and also how to encourage stakeholders to work together to benefit their common clientele – the citizens.