Tailoring technologies to the rehabilitational needs of stroke survivors

Stroke is a major cause of physical disability. Recovery is possible, and can continue indefinitely. As such, much of it will take place at home, often with minimal support from professional therapists. As computing becomes more pervasive and familiar, opportunities exist to design technology to support rehabilitation in the home environment. However, given the varied nature of disabilities caused by stroke, there is a need for a greater understanding of how to design technology that is sufficiently tailored to the needs of individuals and which is appropriate for usage in their homes. This thesis offers an exploration of these issues, through a series of research activities constructed around the direct participation of stroke survivors and their families. The core of this thesis begins with a consideration of a focus group which was attended by survivors of stroke and their partners. Recorded discussions provide a rich insight into their collective experience of living with stroke, and the implications of these findings for the design of effective rehabilitation technologies are considered. The design of bespoke technologies which were directly tailored to the rehabilitational needs and personal motivations of four stroke survivors is then described. Prototypes of these technologies were deployed for periods ranging from one to seven months. Data recorded throughout this entire process provides a detailed understanding of the factors that have influenced their design, use and impact. Through an analysis of material collected during all of these engagements, this thesis presents a set of contributions which can support the design of better home-based rehabilitation technologies in the future. These contributions support a more general understanding of the interactional needs of individuals who have experienced a dramatic and potentially traumatic change in their life, and of mechanisms for tailoring persuasive computing technologies to the specific motivations of those who use them

Tailoring technologies to the rehabilitational needs of stroke survivors

Stroke is a major cause of physical disability. Recovery is possible, and can continue indefinitely. As such, much of it will take place at home, often with minimal support from professional therapists. As computing becomes more pervasive and familiar, opportunities exist to design technology to support rehabilitation in the home environment. However, given the varied nature of disabilities caused by stroke, there is a need for a greater understanding of how to design technology that is sufficiently tailored to the needs of individuals and which is appropriate for usage in their homes. This thesis offers an exploration of these issues, through a series of research activities constructed around the direct participation of stroke survivors and their families. The core of this thesis begins with a consideration of a focus group which was attended by survivors of stroke and their partners. Recorded discussions provide a rich insight into their collective experience of living with stroke, and the implications of these findings for the design of effective rehabilitation technologies are considered. The design of bespoke technologies which were directly tailored to the rehabilitational needs and personal motivations of four stroke survivors is then described. Prototypes of these technologies were deployed for periods ranging from one to seven months. Data recorded throughout this entire process provides a detailed understanding of the factors that have influenced their design, use and impact. Through an analysis of material collected during all of these engagements, this thesis presents a set of contributions which can support the design of better home-based rehabilitation technologies in the future. These contributions support a more general understanding of the interactional needs of individuals who have experienced a dramatic and potentially traumatic change in their life, and of mechanisms for tailoring persuasive computing technologies to the specific motivations of those who use them

Health technologies ‘In the wild’: experiences of engagement with computerised CBT

The widespread deployment of technology by professional health services will provide a substantial opportunity for studies that consider usage in naturalistic settings. Our study has documented experiences of engaging with technologies intended to support recovery from common mental health problems, often used as a part of a multi-year recovery process. In analyzing this material, we identify issues of broad interest to effective health technology design, and reflect on the challenge of studying engagement with health technologies over lengthy time periods. We also consider the importance of designing technologies that are sensitive to the needs of users experiencing chronic health problems, and discuss how the term sensitivity might be defined in a technology design context

Transient elastography and video recovery narrative access to support recovery from alcohol misuse: development of a novel intervention for use in community alcohol treatment services

Background: Mortality from alcohol-related liver disease has risen significantly for three decades. Transient elastography (TE) is a non-invasive test providing a numerical marker of liver disease. Preliminary evidence suggests that receiving TE can reduce alcohol consumption. The KLIFAD (Does knowledge of liver fibrosis affect high risk drinking behaviour?) study has developed a complex intervention in which people receiving alcohol treatment are provided with access to TE, accompanied by scripted feedback tailored to disease state, and access to video narratives describing alcohol misuse recovery after receiving TE. Recovery narratives are included due to preliminary evidence from mental health studies which suggest that access to digital narratives describing recovery from mental health problems can help people affected by mental health problems, including through mechanisms with potential to be transferable to an alcohol treatment setting, for example by increasing hope for the future, enabling learning from the experience of others, or promoting help-seeking behaviours. Objectives: To develop the KLIFAD Intervention to the point that it could be delivered in a feasibility trial; to produce knowledge relevant to clinicians and researchers developing interventions making use of biomarkers of disease. Methods: In research activity one, standardised scripted feedback was developed by the study, and then iterated through focus groups with people who had experienced alcohol misuse and transient elastography, and key alcohol workers with experience of delivering transient elastography. We report critical design considerations identified through focus groups, in the form of sensitizing concepts. In research activity two, a video production guide was co-produced to enable the production of impactful videobased recovery narratives, and a PPI panel was consulted for recommendations on how best to integrated recovery narratives into an alcohol treatment setting. We report PPI recommendations and an overview of video form and content. Results: Through research activity one, we learnt that patient feedback has not been standardised in prior use of transient elastography, that receiving a numeric marker can provide an objective target that motivates and rewards recovery, and that key alcohol workers regularly tailor information to their clients. Through research activity two, we developed a video production guide asking narrators what recovery means to them, what helped their recovery, and what they have learned about recovery. We produced ten recovery narratives and collected PPI recommendations on maximising impact and safety. These led to the production of unplanned videos presenting carer and clinician perspectives, and a choice to limit narrative availability to alcohol treatment settings, where support is available around distressing content. These choices will be evaluated through a feasibility RCT [ISRCTN16922410]. Conclusions: Providing an objective target that motivates and rewards recovery is a candidate change mechanism for complex interventions integrating biomarkers of disease. Recovery narratives can contain distressing content; intervention developers should attend to safe usage

Using recorded mental health recovery narratives as a resource for others: Narrative Experiences Online (NEON) intervention development

Background: The internet enables sharing of narratives about health concerns on a substantial scale, and some digital health narratives have been integrated into digital health interventions. Narratives describing recovery from health problems are a focus of research, including those presented in recorded (eg, invariant) form. No clinical trial has been conducted on a web-based intervention providing access to a collection of Recorded Recovery Narratives (RRNs). Objective: This study presents knowledge produced through the development of the Narrative Experiences Online (NEON) Intervention, a web-based intervention incorporating the algorithmic recommendation of RRNs. Methods: Knowledge was gathered through knowledge integration (KI) activities. KI1 synthesized previous studies to produce the NEON Impact Model describing how accessing RRNs produces health-related outcomes. KI2 developed curation principles for the NEON Collection of RRNs through consultation with the NEON Lived Experience Advisory Panel and the curation of a preliminary collection. KI3 identified harm minimization strategies for the NEON Intervention through consultation with the NEON International Advisory Board and Lived Experience Advisory Panel. The NEON Intervention was finalized through 2 research studies (RS). In RS1, mental health service users (N=40) rated the immediate impact of randomly presented narratives to validate narrative feedback questions used to inform the recommendation algorithm. In RS2, mental health service users (n=25) were interviewed about their immediate response to a prototype of the NEON Intervention and trial procedures and then were interviewed again after 1 month of use. The usability and acceptability of the prototype and trial procedures were evaluated and refinements were made. Results: KI1 produced the NEON Impact Model, which identifies moderators (recipient and context), mechanisms of connection (reflection, comparison, learning, and empathy), processes (identification of change from narrative structure or content and internalization of observed change), and outcomes (helpful and unhelpful). KI2 identified 22 curation principles, including a mission to build a large, heterogeneous collection to maximize opportunities for connection. KI3 identified seven harm minimization strategies, including content warnings, proactive and reactive blocking of narratives, and providing resources for the self-management of emotional distress. RS1 found variation in the impact of narratives on different participants, indicating that participant-level feedback on individual narratives is needed to inform a recommender system. The order of presentation did not predict narrative feedback. RS2 identified amendments to web-based trial procedures and the NEON Intervention. Participants accessed some narratives multiple times, use reduced over the 4-week period, and narrative feedback was provided for 31.8% (105/330) of narrative accesses. Conclusions: RRNs can be integrated into web-based interventions. Evaluating the NEON Intervention in a clinical trial is feasible. The mixed methods design for developing the NEON Intervention can guide its extension to other clinical populations, the design of other web-based mental health interventions, and the development of narrative-based interventions in mental health

Recorded Mental Health Recovery Narratives as a Resource for People Affected by Mental Health Problems: Development of the Narrative Experiences Online (NEON) Intervention.

BACKGROUND: The internet enables sharing of narratives about health concerns on a substantial scale, and some digital health narratives have been integrated into digital health interventions. Narratives describing recovery from health problems are a focus of research, including those presented in recorded (eg, invariant) form. No clinical trial has been conducted on a web-based intervention providing access to a collection of Recorded Recovery Narratives (RRNs). OBJECTIVE: This study presents knowledge produced through the development of the Narrative Experiences Online (NEON) Intervention, a web-based intervention incorporating the algorithmic recommendation of RRNs. METHODS: Knowledge was gathered through knowledge integration (KI) activities. KI1 synthesized previous studies to produce the NEON Impact Model describing how accessing RRNs produces health-related outcomes. KI2 developed curation principles for the NEON Collection of RRNs through consultation with the NEON Lived Experience Advisory Panel and the curation of a preliminary collection. KI3 identified harm minimization strategies for the NEON Intervention through consultation with the NEON International Advisory Board and Lived Experience Advisory Panel. The NEON Intervention was finalized through 2 research studies (RS). In RS1, mental health service users (N=40) rated the immediate impact of randomly presented narratives to validate narrative feedback questions used to inform the recommendation algorithm. In RS2, mental health service users (n=25) were interviewed about their immediate response to a prototype of the NEON Intervention and trial procedures and then were interviewed again after 1 month of use. The usability and acceptability of the prototype and trial procedures were evaluated and refinements were made. RESULTS: KI1 produced the NEON Impact Model, which identifies moderators (recipient and context), mechanisms of connection (reflection, comparison, learning, and empathy), processes (identification of change from narrative structure or content and internalization of observed change), and outcomes (helpful and unhelpful). KI2 identified 22 curation principles, including a mission to build a large, heterogeneous collection to maximize opportunities for connection. KI3 identified seven harm minimization strategies, including content warnings, proactive and reactive blocking of narratives, and providing resources for the self-management of emotional distress. RS1 found variation in the impact of narratives on different participants, indicating that participant-level feedback on individual narratives is needed to inform a recommender system. The order of presentation did not predict narrative feedback. RS2 identified amendments to web-based trial procedures and the NEON Intervention. Participants accessed some narratives multiple times, use reduced over the 4-week period, and narrative feedback was provided for 31.8% (105/330) of narrative accesses. CONCLUSIONS: RRNs can be integrated into web-based interventions. Evaluating the NEON Intervention in a clinical trial is feasible. The mixed methods design for developing the NEON Intervention can guide its extension to other clinical populations, the design of other web-based mental health interventions, and the development of narrative-based interventions in mental health

Many-screen viewing: collaborative consumption of television media across multiple devices

The landscape of television is changing. Modern Internet enabled sets are now capable computing devices offering new forms of connectivity and interaction to viewers. One development enabled by this transition is the distribution of auxiliary content to a portable computing device, such as a mobile phone or tablet, working in concert with the television. These configurations are enabled by second screen applications that provide relevant content in synchronisation with the programme on a nearby television set. This thesis extends the notion of second screen to arrangements that incorporate multiple mobile devices working with the television, utilised by collocated groups of participants. Herein these arrangements are referred to as ‘many-screen’ television. Two many-screen applications were developed for the augmentation of sports programming in preparation of this thesis; the Olympic Companion and MarathOn Multiscreen Applications. Both of these applications were informed by background literature on second screen television and wider issues in HCI multiscreen research. In addition, the design of both applications was inspired by the needs of traditional and online broadcasters, through an internship with BBC Research and Development and involvement in a YouTube sponsored project. Both the applications were evaluated by collocated groups of users in formative user studies. These studies centred on how users share and organise what to watch, incorporate activity within the traditionally passive television viewing experience and the integration of user-generated video content in a many-screen system. The primary contribution of this thesis is a series of industry validated guidelines for the design of many-screen applications. The guidelines highlight issues around user awareness devices, content and other user’s actions, the balance between communal and private viewing and the appropriation of user-generated content in many-screen watching

Many-screen viewing: collaborative consumption of television media across multiple devices

The landscape of television is changing. Modern Internet enabled sets are now capable computing devices offering new forms of connectivity and interaction to viewers. One development enabled by this transition is the distribution of auxiliary content to a portable computing device, such as a mobile phone or tablet, working in concert with the television. These configurations are enabled by second screen applications that provide relevant content in synchronisation with the programme on a nearby television set. This thesis extends the notion of second screen to arrangements that incorporate multiple mobile devices working with the television, utilised by collocated groups of participants. Herein these arrangements are referred to as ‘many-screen’ television. Two many-screen applications were developed for the augmentation of sports programming in preparation of this thesis; the Olympic Companion and MarathOn Multiscreen Applications. Both of these applications were informed by background literature on second screen television and wider issues in HCI multiscreen research. In addition, the design of both applications was inspired by the needs of traditional and online broadcasters, through an internship with BBC Research and Development and involvement in a YouTube sponsored project. Both the applications were evaluated by collocated groups of users in formative user studies. These studies centred on how users share and organise what to watch, incorporate activity within the traditionally passive television viewing experience and the integration of user-generated video content in a many-screen system. The primary contribution of this thesis is a series of industry validated guidelines for the design of many-screen applications. The guidelines highlight issues around user awareness devices, content and other user’s actions, the balance between communal and private viewing and the appropriation of user-generated content in many-screen watching