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.