Experiences of care and adjustment to change in caregivers of children with autoimmune encephalitis: an interpretative phenomenological analysis

Background: Autoimmune encephalitis (AE) occurs in response to an antibody-mediated central nervous system disease and can lead to significant neurodisability. Prior research on family adjustment has described a reciprocal relationship between caregiver functioning, distress and clinical outcome in parents and children with encephalitis. There has been no previous research exploring the experiences of caregivers with a child with AE. Aims: To explore the perspectives of parents and/or caregivers with a child diagnosed with AE regarding (i) their own adjustment from hospital admission to post-discharge, and (ii) their experiences of care and service provision. Methods: A purposive sampling approach was used. Five parents of children with AE participated in a semi-structured interview exploring their experiences of caring for their child and service provision during acute care and post-discharge. Interpretative Phenomenological Analysis (IPA) was used to analyse the transcripts. Main findings and conclusions: Four shared super-ordinate themes with related subthemes emerged: (a) uncertainty, (b) managing our recovery, (c) changes in my child, (d) experiences of service provision. Participants reported emotional distress, often underpinned by recurrent experiences of uncertainty, and ‘loss’ of the previous child, and mediated by coping strategies and social support. While an overall positive experience of inpatient services was reported, parents often perceived post-discharge services as lacking in co-ordination, communication and formal follow-up, resulting in unmet support needs. Implications and recommendations for services, practitioners and future research are discussed.

Utilising presence in places to support mobile interaction

Physical places are given contextual meaning by the objects and people that make up the space. Presence in physical places can be utilised to support mobile interaction by making access to media and notifications on a smartphone easier and more visible to other people. Smartphone interfaces can be extended into the physical world in a meaningful way by anchoring digital content to artefacts, and interactions situated around physical artefacts can provide contextual meaning to private manipulations with a mobile device. Additionally, places themselves are designed to support a set of tasks, and the logical structure of places can be used to organise content on the smartphone. Menus that adapt the functionality of a smartphone can support the user by presenting the tools most likely to be needed just-in-time, so that information needs can be satisfied quickly and with little cognitive effort. Furthermore, places are often shared with people whom the user knows, and the smartphone can facilitate social situations by providing access to content that stimulates conversation. However, the smartphone can disrupt a collaborative environment, by alerting the user with unimportant notifications, or sucking the user in to the digital world with attractive content that is only shown on a private screen. Sharing smartphone content on a situated display creates an inclusive and unobtrusive user experience, and can increase focus on a primary task by allowing content to be read at a glance. Mobile interaction situated around artefacts of personal places is investigated as a way to support users to access content from their smartphone while managing their physical presence. A menu that adapts to personal places is evaluated to reduce the time and effort of app navigation, and coordinating smartphone content on a situated display is found to support social engagement and the negotiation of notifications. Improving the sensing of smartphone users in places is a challenge that is out-with the scope of this thesis. Instead, interaction designers and developers should be provided with low-cost positioning tools that utilise presence in places, and enable quantitative and qualitative data to be collected in user evaluations. Two lightweight positioning tools are developed with the low-cost sensors that are currently available: The Microsoft Kinect depth sensor allows movements of a smartphone user to be tracked in a limited area of a place, and Bluetooth beacons enable the larger context of a place to be detected. Positioning experiments with each sensor are performed to highlight the capabilities and limitations of current sensing techniques for designing interactions with a smartphone. Both tools enable prototypes to be built with a rapid prototyping approach, and mobile interactions can be tested with more advanced sensing techniques as they become available. Sensing technologies are becoming pervasive, and it will soon be possible to perform reliable place detection in-the-wild. Novel interactions that utilise presence in places can support smartphone users by making access to useful functionality easy and more visible to the people who matter most in everyday life.