Thesis

Technology Mediated Information Sharing Within the Triad of Aged Care

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Abstract

More than other age group, older adults suffer from multiple chronic conditions, receive care from multiple healthcare providers and settings, and transition across this continuum of care as they age. During the last decade, we have observed the transformation of aged care worldwide both on organisational and legal levels due to an increasing older population from one side and the use of technology in their care from another. In addition, the involvement of family members as informal caregivers introduces the concept of a triad of aged care: a collaboration of senior patients, their relatives and professional caregivers; and poses additional challenges such as appropriate and efficient communication from the points of views of all care stakeholders. Hence, sharing of health and wellbeing information (HWBI) in the care triad becomes particularly important, and e-Health services have shown the potential to support this, for example, by becoming a channel that could mediate sharing, while taking into account the values and concerns of all groups of users. In this thesis, we explore existing strategies of HWBI sharing in various aged care scenarios and identify the challenges and opportunities of designing information systems that could support them. In particular, by conducting a systematic literature review and a series of user studies with all three groups of care stakeholders, we study if and how technology-based mediation of informational exchange can improve institutionalized care for older adults. We primarily focus on different dimensions of aged care scenarios, based on the involvement of triad stakeholders, the level of acceptance of technology, and the degree of control seniors have over sharing their HWBI. To gather design recommendations for such information systems, we investigate HWBI-related work practices of professional caregivers; information needs of family members, and information disclosure preferences and associated concerns of seniors, including their reasons to share or not to share. We raise a critical discussion on values addressed by e-Health interventions and illustrate the views of care stakeholders, revealing that these views can be conflicting, given their needs and priorities. For instance, tensions emerge between values that prioritise placing the responsibility on a physician for their patients versus a value system that prioritises patient autonomy. By discussing information and interaction design of technology-based mediation of HWBI sharing and based on the research findings of this thesis, we provide a set of design principles and requirements targeting the following areas and roles: - e-Health and HCI researchers, providing a foundation for their future research, - designers, who could benefit from a complete image of the abilities and needs of potential users in this sensitive and complex care context, - healthcare and legislation policies, that could adhere to a system of values that place a premium on patient empowerment, and - educational programs, that need to provide seniors and triad actors with the knowledge of how to share personal health information digitally. Finally, following a user-centred design approach, we implement these design recommendations and evaluate them with caregivers to validate our findings.

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Advancements in information technology often task users with complex and consequential privacy and security decisions. A growing body of research has investigated individuals’ choices in the presence of privacy and information security tradeoffs, the decision-making hurdles affecting those choices, and ways to mitigate such hurdles. This article provides a multi-disciplinary assessment of the literature pertaining to privacy and security decision making. It focuses on research on assisting individuals’ privacy and security choices with soft paternalistic interventions that nudge users toward more beneficial choices. The article discusses potential benefits of those interventions, highlights their shortcomings, and identifies key ethical, design, and research challenges.
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Design guidelines and checklists are suggested as a useful tool in the development and evaluation of interface design of mobile phones for older adults. Given the intense evolution of mobile phone design, understanding how the design guidelines and checklists have taken into account the advances in mobile phone usability for older adults is important for their correct application and future development. Thus, this study explores the usability dimensions of mobile phone design for older adults and the related changes in terms of time and the type of device (feature phones vs. smartphones) based on an expert coding of the eight mobile phone design guidelines and checklists for older adults published between 2006 and 2014. The results of the expert coding show that design guidelines and checklists most frequently deal with visual and haptic issues (e.g., high contrast, button type, and button size), whilst they hardly ever address various elements of textual interface (e.g., ease of text entry, a button’s feedback, and font type). Over time, the design guidelines and checklists have become more complex in terms of the average number of included usability categories and dimensions. For smartphones, the guidelines, on average, put more emphasis on the screen, touchscreen, text, and exterior related issues, whereas the design guidelines for feature phones stress the usability of the keypad and menus. Besides revealing potential usability dimensions that could be further expanded in the guidelines, this study also highlights the need for research that would empirically validate the design guidelines and checklists in the future.
Conference Paper
Caring for institutionalized older adults is known to be a complex issue both for families and professionals. In recent years, there has been an increasing interest in this topic primarily due to a growing older population and, hence, a heightened need of research contributions in this area. Previous studies on caregiving for older adults living in nursing homes recognize the necessity to support professionals' work practices to ameliorate their working conditions, and decrease the risk of burnout and job dissatisfaction. In this study, we investigated the practice of caregiving at nursing homes in the Northern Italy in the form of a case-study. We mainly focus on the work practices of care professionals, and on the relational issues between professional and family caregivers. The outcomes of this work shed new light on the opportunities of using ICT solutions to improve relations and information sharing among caregivers.
Conference Paper
Spear phishing emails are key in many cyber attacks. Successful emails employ psychological weapons of influence and relevant life domains. This paper investigates spear phishing susceptibility as a function of Internet user age (old vs young), weapon of influence, and life domain. A 21-day study was conducted with 158 participants (younger and older Internet users). Data collection took place at the participants' homes to increase ecological validity. Our results show that older women were the most vulnerable group to phishing attacks. While younger adults were most susceptible to scarcity, older adults were most susceptible to reciprocation. Further, there was a discrepancy, particularly among older users, between self-reported susceptibility awareness and their behavior during the intervention. Our results show the need for demographic personalization for warnings, training and educational tools in targeting the specifics of the older adult population.
Conference Paper
Despite the existence of web accessibility guidelines - e.g. Web Content Accessibility Guidelines - to help developers and designers to create more accessible websites, many websites are still not accessible. Studies showed that guidelines do not cover all the problems encounter by users with disabilities. This study investigates the problems found by seven accessibility experts in 62 accessibility evaluation reviews of mobile and desktop websites as well as mobile applications. Each evaluation conducted an accessibility review using Web Content Accessibility Guidelines 2.0 AA. In addition, experts highlighted potential issues which were not covered by these guidelines but could be potential issues encountered by people with disabilities. The study depicts those issues that were raised by experts during those audits but were not covered by the WCAG 2.0 guidelines. Finally, the study provides additional knowledge into potential problems as identified by experts and recommends techniques that developers and designers can use to create more accessible websites.
Conference Paper
Designing systems to support the social context of personal data is a topic of importance in CSCW, particularly in the area of health and wellness. The relational complexities and psychological consequences of living with health data, however, are still emerging. Drawing on a 12+ month ethnography and corroborating survey data, we detail the experiences of parents using Nightscout--an open source, DIY system for remotely monitoring blood glucose data-with their children who have type one diabetes. Managing diabetes with Nightscout is a deeply relational and (at times) contested activity for parent-caregivers, whose practices reveal the tensions and vulnerabilities of caregiving work enacted through data. As engagement with personal data becomes an increasingly powerful way people experience life, our findings call for alternative data narratives that reflect a multiplicity of emotional concerns and social arrangements. We propose the analytic lens of caring-through-data as a way forward.
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Editor's Note: PTJ's Editorial Board has adopted PRISMA to help PTJ better communicate research to physical therapists. For more, read Chris Maher's editorial starting on page 870. Membership of the PRISMA Group is provided in the Acknowledgments. This article has been reprinted with permission from the Annals of Internal Medicine from Moher D, Liberati A, Tetzlaff J, Altman DG, The PRISMA Group. Preferred Reporting Items for Systematic Reviews and Meta-Analyses: The PRISMA Statement. Ann Intern Med. Available at: http://www.annals.org/cgi/content/full/151/4/264. The authors jointly hold copyright of this article. This article has also been published in PLoS Medicine, BMJ, Journal of Clinical Epidemiology, and Open Medicine. Copyright © 2009 Moher et al. This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.
Chapter
Technology offers promise to make lives better, but also introduces new challenges to patients, families, and clinicians. Many of these challenges, however, are not unique to technology. Clinicians will face ethical dilemmas about information sharing, autonomy, and privacy presented by communication and information technology, including patient portals and social media. Existing ethical frameworks and approaches can be applied and adapted to the challenges posed by new technology. In this chapter, we will present frameworks that clinicians can use to resolve ethical dilemmas and discuss common scenarios with practical guidance for clinicians.
Conference Paper
Individuals with multiple chronic conditions (MCC) collaborate with spousal caregivers daily to pursue what is most important to their health and well-being. Previous research in human-computer interaction has supported individuals with chronic conditions or their caregivers, but little has supported both as a unit. We conducted a field study with 12 patient-caregiver dyads, all married and living together, to identify partners’ values and how they shape collaborative management of MCC. Partners’ coinciding values motivated them to empathize with and support each other in the face of challenges related to health and well-being. When their values were asymmetric, they perceived tensions between individual autonomy and their ability to coordinate with their partner. Systems to support partners in this context could help them overcome asymmetric values, but should balance this with support for individual autonomy.
Conference Paper
Informal caregivers, such as close friends and family, play an important role in a hospital patient’s care. Although CSCW researchers have shown the potential for social computing technologies to help patients and their caregivers manage chronic conditions and support health behavior change, few studies focus on caregivers’ role during a multi-day hospital stay. To explore this space, we conducted an interview and observation study of patients and caregivers in the inpatient setting. In this paper, we describe how caregivers and patients coordinate and collaborate to manage patients’ care and wellbeing during a hospital stay. We define and describe five roles caregivers adopt: companion, assistant, representative, navigator, and planner, and show how patients and caregivers negotiate these roles and responsibilities throughout a hospital stay. Finally, we identify key design considerations for technology to support patients and caregivers during a hospital stay.
Article
Introduction. We report results of a study of how ordering and reading of printouts of medical records by regular and inexperienced readers relate to how the records are used, to the health information practices of patients, and to their expectations of the usefulness of new e-Health services and online access to medical records. Method. The study is based on a combined postal-and Web-survey of a simple random sample of 1000 patients who ordered a paper copy of their medical records from the Uppsala county council (Sweden) with a final analysed sample of 354 returned questionnaires. Analysis. The data were analysed using SPSS 21.0 using descriptive statistics, one-way analysis of variation (ANOVA) using Tamhane's T2 test, chi-squared tests and logistic regression analysis. Results. The analysis shows that individuals who had ordered a copy of their medical records in the past perceive their usefulness in broader terms than first-timers. The regular readers are also most concerned about their health and the quality of care. Conclusions. It seems that in addition to certain demographic factors, many of the variations in the data can be explained in terms of adaptive structuration theory. This is a result of a parallel structuration of patients, medical records and the paper-based and online technologies of access, and consequently how patients perceive records and the different methods of accessing and using them.
Article
Background: Modern health care philosophy espouses the virtues of holistic care and acknowledges that family involvement is appropriate and something to be encouraged due to the role it plays in physical and emotional healing. In the aged care sector, the involvement of families is a strong guarantee of a resident's wellbeing. The important role family plays in the support and care of the older adult in the residential aged care environment has been enshrined in the Australian Commonwealth Charter of Residents' Rights and Responsibilities and the Aged Care Standards of Practice. Despite wide acknowledgement of the importance of family imvolvement in the health care of the older adult, many barriers to the implementation of participatory family care have been identified in past research. For older adults in the health care environment to benefit from the involvement of their family members, health care professionals need an understanding of the issues surrounding family presence in the health care environement and the strategies to best support it. Objectives: The objectives of the systematic review were to present the best available evidence on the strategies, practices and organisational characteristics that promote constructive staff-family relationships in the care of older adults in the health care setting. Specifically this review sought to investigate how staff and family members perceive their relationships with each other; staff characteristics that promote constructive relationships with the family; and interventions that support staff-family relationships. Search strategy: A literature search was performed using the following databases for the years 1990-2005: Ageline, APAIS Health, Australian Family & Society Abstracts (FAMILY), CINAHL, Cochrane Library, Dare, Dissertation Abstracts, Embase, MEDLINE, PsycINFO, and Social Science Index. Personal communication from expert panel members was also used to identify studies for inclusion. A second search stage was conducted through review of reference lists of studies retrieved during the first search stage. The search was limited to published and unpublished material in English language. Selection criteria: The review was limited to studies involving residents and patients within acute, subacute, rehabilitation and residential settings, aged over 65 years, their family and health care staff. Papers addressing family members and health care staff perceptions of their relationships with each other were considered for this review. Studies in this review also included those relating to interventions to promote constructive staff-family relationships including organisational strategies, staff-family meetings, case conferencing, environmental approaches etc. The review considered both quantitative and qualitative research and opinion papers for inclusion. Data collection and analysis: All retrieved papers were critically appraised for eligibility for inclusion and methodological quality independently by two reviewers, and the same reviewers collected details of eligible research. Appraisal forms and data extraction forms designed by the Joanna Briggs Institute as part of the QARI and NOTARI systematic review software packages were used for this review. Findings: Family members' perceptions of their relationships with staff showed that a strong focus was placed on opportunities for the family to be involved in the patient's care. Staff members also expressed a theoretical support for the collaborative process, however this belief often did not translate to the staff members' clinical practice. In the studies included in the review staff were frequently found to rely on traditional medical models of care in their clinical practice and maintaining control over the environment, rather than fully collaborating with families. Four factors were found to be essential to interventions designed to support a collaborative partnership between family members and health care staff: communication, information, education and administrative support. Based on the evidence analysed in this systematic review, staff and family education on relationship development, power and control issues, communication skills and negotiating techniques is essential to promoting constructive staff-family relationships. Managerial support, such as addressing workloads and staffing issues; introducing care models focused on collaboration with families; and providing practical support for staff education, is essential to gaining sustained benefits from interventions designed to promote constructive family-staff relationships.
Conference Paper
Voice interactions on mobile phones are most often used to augment or supplement touch based interactions for users' convenience. However, for people with limited hand dexterity caused by various forms of motor-impairments voice interactions can have a significant impact and in some cases even enable independent interaction with a mobile device for the first time. For these users, a Mobile Voice User Interface (M-VUI), which allows for completely hands-free, voice only interaction would provide a high level of accessibility and independence. Implementing such a system requires research to address long standing usability challenges introduced by voice interactions that negatively affect user experience due to difficulty learning and discovering voice commands. In this paper we address these concerns reporting on research conducted to improve the visibility and learnability of voice commands of a M-VUI application being developed on the Android platform. Our research confirmed long standing challenges with voice interactions while exploring several methods for improving the onboarding and learning experience. Based on our findings we offer a set of implications for the design of M-VUIs.