Connecting Those That Care: Designing for Transitioning, Talking, Belonging and Escaping

This is the author accepted manuscript. The final version is available from ACM via the DOI in this record.Care provision in many nations increasingly relies on the work of informal, or non-professional, carers. Often these carers experience substantial disruptions and reductions to their own sociality, weakened social support networks and, ultimately, a heightened risk of social isolation. We describe a qualitative study, comprised of interviews, design workshops and probes, that investigated the social and community support practices of carers. Our findings highlight issues related to becoming and recognising being a carer, and feelings of being ignored by, and isolated from, others. We also note the benefits that sharing between carers can bring, and routes to coping and relaxing from the burdens of care. We conclude with design considerations for facilitating new forms of digitally mediated support that connect those that care, emphasising design qualities related to transitioning, talking, belonging and escaping

Enabling the Participation of People with Parkinson's and Their Caregivers in Co-Inquiry around Collectivist Health Technologies

While user participation is central to HCI, co-inquiry takes this further by having participants direct and control research from conceptualisation to completion. We describe a co-inquiry, conducted over 16 months with a Parkinson's support group. We explored how the participation of members might be enabled across multiple stages of a research project, from the generation of research questions to the development of a prototype. Participants directed the research into developing alternative modes of information provision, resulting in ‘Parkinson’s Radio’ — a collectivist health information service produced and edited by members of the support group. We reflect on how we supported participation at different stages of the project and the successes and challenges faced by the team. We contribute insights into the design of collectivist health technologies for this group, and discuss opportunities and tensions for conducting co-inquiry in HCI research

Forming Impressions on Computer-Mediated Healthcare Peer-Support Systems for Informal Caregivers

The rapid evolution of Information technology (IT) has seen its adoption during many aspects of our lives, including healthcare. Healthcare IT provides the public with access to governmental records, electronic health records, healthcare websites, internet-based medical consultation, and more recently, online peer-support portals. These peer-support portals, which are directed not only towards patients but also caregivers, have been found to be a source of informational and emotional support. In addition, for caregivers who cannot leave their loved ones to access in-person support groups, these online support portals are an important substitute. In these online peer-support portals, informal caregivers interact with one another, providing emotional and personal support, leading to a sense of camaraderie and thereby a social relationship. The contributions on these portals are voluntary, with some members contributing more often than others. The first study in this dissertation focuses on understanding the patterns of interaction between these top contributors, referred to here as peer patrons, and other informal caregivers in terms of the information they provide, and the unique characteristics of the top contributors based on these interactions. Several unique interaction patterns related to peer patrons were found along with information about how peer patrons contribute towards the coping mechanism of informal caregivers. Interface design implications based on these outcomes were discussed. With informal caregivers exchanging not only information and emotional content on online peer-support portals but also forming social relations, it is important to understand how these users form impressions of others based on the information they access. The possible consequences of following healthcare and medical advice posted on these portals further emphasize the need to understand how users form impressions of one another on these portals. The second study in this dissertation focuses on impression formation using profiles based on those of the peer patrons who were the focus of the previous study. This exploratory study brought to light the prominence of the comment content and the profile picture in forming impressions on these portals, thereby supporting literature regarding context effects on impression formation. The final chapter is an intervention-based study investigating factors leading to positive impression formation on online healthcare peer-support portals. It supported the findings from the previous study regarding the importance of comment and profile picture and suggested the use of other peer ratings to solidify impressions formed using the former two cues. Additionally, the contribution of this dissertation to the literature and the improvement of online healthcare peer-support portals is discussed

Designing video stories around the lived experience of severe mental illness

Caregivers of people experiencing severe mental illness (SMI) report a multitude of psychosocial impacts, including feelings of loneliness and isolation, distress, societal stigma and prejudice around mental health. We describe the design of a series of video stories, performed by actors, which were based on the lived experiences of caregivers and people with SMI. We conducted a series of in-depth qualitative interviews with 11 participants, which formed the basis for the video content. We then worked alongside two caregivers (as advisors), at each stage of the production process, to develop a set of 45 video stories, using personas in our process. Through a discussion of our creative process, we offer a set of considerations for future researchers wishing to develop relatable and empathic digital content for online information provision and support tools. In addition, we offer a set of reflections around the complex ethical challenges underpinning this design space

Sex trafficking in Nepal: A qualitative study of process and context. Abstract.

Thousands of Nepalese girls are trafficked to India and other neighbouring countries every year, primarily for sex work and the majority return to Nepal after spending a years in sex trade. The sub‐group of Nepalese girls who become involved in sex work via trafficking are the focus of this paper. The aim of this study was to increase understanding regarding the context of sex trafficking, the methods and means of trafficking, living conditions in brothels and survival strategies among trafficked girls. We conducted 33 in‐depth interviews in early 2013 with returned trafficking survivors (n=14) and policy‐makers, people working in trafficking related NGOs/INGOs (n=19) in Nepal. All 14 trafficking survivors were recruited in Nepal through the NGO working on trafficking field. The young girls trafficked from Nepal to India in this study were typically unmarried, illiterate and very young (8 to 14 years at the time of trafficking). The key methods of trafficking were false marriage, fake job offer, and abduction. Among the 14 respondents, some had spent one month and others nearly 5 years in Indian brothels. Respondents were either rescued, escaped or released by brothel owners. Four out of 14 were HIV positive. Most policy makers mentioned that poverty, unemployment and illiteracy are the causes behind the trafficking of young girls. The anti‐trafficking interventions need to be considered at a) community level before movement has begun; b) urban centres which are both source and transitory centres for trafficking; c) trafficking level when girls are highly mobile and when they are in brothels; and d) return from trafficking as girls to m ove back into the community

One Child Policy and Women's Challenging Social Situation in China

The purpose of this study is to explore the paradox that young women in China find it difficult to search for a husband when there is a surplus of men in the population. The research questions and hypothesis is in concern with how the One Child Policy has a salient impact on the Chinese young women. The methodology involves in-depth interviews among 10 participants and documentary analysis. By observing the experience of the young women, and the only daughters in particular, it demonstrates that young women in China are faced with difficulties in balancing work and caregiving. Using the framework of the Confucian caring regime, the current study reveals that Chinese young women are stressed about their future caring responsibilities. Compared to young women with siblings, the only daughters have more challenges due to the lack of public support and high expectations. The framework of the Confucian caring regime is so preliminary that it needs developing. Considering the remarkable outcomes of the One Child Policy in China, it is time for policymakers to rethink and strategize it

Surveillance technology, dementia and the media: Responses from people living with dementia and family carers

Globally technology has become a popular response to the challenges of ageing populations. Dementia presents a particular problem for family carers and policy makers for which surveillance technologies (STs) such as monitoring devices are posited as solutions. ST products are marketed online focusing on their capacity to empower people with dementia; however, these products are developed without considering (potential) user input. The literature about dementia and surveillance was reviewed as was the nature of the ST market. The involvement of users in setting the parameters and utilities of such products was investigated through qualitative research. This interdisciplinary research undertook a tripartite approach studying: production (what is on the market); audience reception (what do users need); and media content (what media techniques are used to attract attention) in the United Kingdom, Sweden and the Netherlands. The key finding across studies was that there was little recognition that people with dementia have different needs from those of carers. A “wanderer” discourse gave minimum representation to people with dementia interacting with technology stressing instead the dangers of wandering from carers’ perspectives. This dichotomy was reflected in the different interpretations that each group made of advertisements. Carers focused on wanting small trackers for covert use. People with dementia conversely thought ST was not for them as it stigmatised them. People with dementia are not passive. They have individual needs for independence and these can conflict with those of carers. These findings are relevant to technology designers and advertisers by highlighting their assumptions about this gap in the (civil rights) movement market

Ageing with Smartphones in Urban Italy

‘Who am I at this (st)age? Where am I and where should I be, and how and where should I live?’ These questions, which individuals ask themselves throughout their lives, are among the central themes of this book, which presents an anthropological account of the everyday experiences of age and ageing in an inner-city neighbourhood in Milan, and in places and spaces beyond.Ageing with Smartphones in Urban Italy explores ageing and digital technologies amidst a backdrop of rapid global technological innovation, including mHealth (mobile health) and smart cities, and a number of wider socio-economic and technological transformations that have brought about significant changes in how people live, work and retire, and how they communicate and care for each other. Based on 16 months of urban digital ethnographic research in Milan, the smartphone is shown to be a ‘constant companion’ in, of and for contemporary life. It accompanies people throughout the day and night, and through individual and collective experiences of movement, change and rupture. Smartphone practices tap into and reflect the moral anxieties of the present moment, while posing questions related to life values and purpose, identities and belonging, privacy and sociability. Through her extensive investigation, Shireen Walton argues that ageing with smartphones in this contemporary urban Italian context is about living with ambiguity, change and contradiction, as well as developing curiosities about a changing world, our changing selves, and changing relationships with and to others. Ageing with smartphones is about figuring out how best to live together, differently