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Tailoring technologies to the rehabilitational needs of stroke survivors
Abstract and Figures
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.
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... At the follow-up interview, participants were shown their usage and asked to discuss notable features, such as periods of high or low usage. Data usage summary sheets as a form of data visualization are a standard approach to support reflection on computer system usage [80]. If a system or system feature is underused, the discussion of usage data can differentiate whether this was due to (1) the system creating immediate positive change requiring no further engagement, (2) periods of planned technological disconnection such as holidays, or (3) malfunction, dislike, or poor usability of the system or feature [81]. ...
... The variation in feedback received against individual narratives, with some participants finding the same narrative hope-promoting and others finding it pessimism-promoting, suggests a need for the tailoring of narrative selection to the needs of individuals and validates the choice of a recommender system. The need to tailor digital interventions to recipients has long been recognized in health research, including in studies on stroke rehabilitation technologies [80]. Alankus et al [86] selected a target technology (rehabilitation gaming) and systematically demonstrated how to select properties of the technology that might be tailored. ...
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.
... At the follow-up interview, participants were shown their usage and asked to discuss notable features, such as periods of high or low usage. Data usage summary sheets as a form of data visualization are a standard approach to support reflection on computer system usage [80]. If a system or system feature is underused, the discussion of usage data can differentiate whether this was due to (1) the system creating immediate positive change requiring no further engagement, (2) periods of planned technological disconnection such as holidays, or (3) malfunction, dislike, or poor usability of the system or feature [81]. ...
... The variation in feedback received against individual narratives, with some participants finding the same narrative hope-promoting and others finding it pessimism-promoting, suggests a need for the tailoring of narrative selection to the needs of individuals and validates the choice of a recommender system. The need to tailor digital interventions to recipients has long been recognized in health research, including in studies on stroke rehabilitation technologies [80]. Alankus et al [86] selected a target technology (rehabilitation gaming) and systematically demonstrated how to select properties of the technology that might be tailored. ...
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.
... The purpose of this paper is to integrate across material collected through the range of engagements collected during Motivating Mobility so as to present emergent findings that represent the totality of what we have learned through this work, with a specific focus on what we have learned about the domestic environment and its interaction with rehabilitation technology. For its content, it draws primarily on the PhD thesis of Rennick-Egglestone [33], written after the completion of the Motivating Mobility project, and integrates further analytical work completed after the submission of this thesis. ...
... We interviewed Irene at several stages during the deployment; a notable outcome, documented more fully in [33], was then a significant contention between the participant and her partners in the meaning of this device, and hence how it should be used. Irene saw our prototype roughly how we had intended it, as a leisure device, with exercise occurring as a side effect. ...
UNSTRUCTURED
The design of digital technologies that support poststroke rehabilitation at home has been a topic of research for some time. If technology is to have a large-scale impact on rehabilitation practice, then we need to understand how to create technologies that are appropriate for the domestic environment and for the needs and motivations of those living there. This paper reflects on the research conducted in the Motivating Mobility project (UK Engineering and Physical Science Research Council: EP/F00382X/1). We conducted sensitizing studies to develop a foundational understanding of the homes of stroke survivors, participatory design sessions situated in the home, and experimental deployments of prototype rehabilitation technologies. We identified four challenges specific to the homes of stroke survivors and relevant to the deployment of rehabilitation technologies: identifying a location for rehabilitation technology, negotiating social relationships present in the home, avoiding additional stress in households at risk of existential stress, and providing for patient safety. We conclude that skilled workers may be needed to enable successful technology deployment, systematizing the mapping of the home may be beneficial, and education is a viable focus for rehabilitation technologies.
... (2) identifying strategies for supporting people who feel distressed if markers reveal unanticipated or substantial disease; and (3) producing narrative material that is authentic and impactful, while protecting narrators from the possible harms of identity disclosure. In our work, we have chosen a basic approach of tailoring materials purely to the disease state using a static model, but health research studies have frequently argued for the benefits of more dynamically tailoring materials and interventions to a broad range of individual characteristics and needs [30]. Developers of related interventions may consider how best to tailor materials that they provide to the populations of use. ...
Background: Mortality from alcohol-related liver disease has risen significantly for 3 decades. Transient elastography (TE) is a noninvasive test providing a numerical marker of liver disease. Preliminary evidence suggests that TE can reduce alcohol consumption. The KLIFAD (does knowledge of liver fibrosis affect high-risk drinking behavior?) study has developed a complex intervention wherein people receiving alcohol treatment are provided with access to TE, accompanied by scripted feedback tailored to their 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 the 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 behaviors.
Objective: We aimed to develop the KLIFAD intervention to the point that it could be delivered in a feasibility trial and to produce knowledge relevant to clinicians and researchers developing interventions making use of biomarkers of disease.
Methods: In research activity 1, standardized scripted feedback was developed by this study, and then iterated through focus groups with people who had experienced alcohol misuse and TE, and key alcohol workers with experience in delivering TE. We report critical design considerations identified through focus groups, in the form of sensitizing concepts. In research activity 2, a video production guide was coproduced to help produce impactful video-based recovery narratives, and a patient and public involvement (PPI) panel was consulted for recommendations on how best to integrate recovery narratives into an alcohol treatment setting. We report PPI recommendations and an overview of video form and content.
Results: Through research activity 1, we learnt that patient feedback has not been standardized in prior use of TE, 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 2, 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 10 recovery narratives and collected PPI recommendations on maximizing impact and safety. These led to the production of unplanned videos presenting caregiver and clinician perspectives, and a choice to limit narrative availability to alcohol treatment settings, where support is available around distressing content. These choices have been evaluated through a feasibility randomized controlled trial [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.
... During the interview, some intervention group participants will be shown visualisations of logging data collected by the NEON Intervention and asked to explain interesting or unusual patterns, such as periods of very heavy or very light usage. This is a standard approach to enabling reflection on computer system usage [106], and it provides a mechanism for augmenting system logs with the cause of such phenomena. Interviews with the intervention group for the NEON-O Trial and NEON-C Trial will be shorter, and will focus on the acceptability of the intervention to these participants. ...
Background:
Mental health recovery narratives have been defined as first-person lived experience accounts of recovery from mental health problems which refer to events or actions over a period of time and which include elements of adversity or struggle, and also self-defined strengths, successes or survival. They are readily available in invariant recorded form, including text, audio or video. Previous studies have provided evidence that receiving recorded recovery narratives can provide benefits to recipients. This protocol describes three pragmatic trials that will be conducted by the Narrative Experiences Online (NEON) study using the NEON Intervention, a web application that delivers recorded recovery narratives to its users. The aim of the NEON Trial is to understand whether receiving online recorded recovery narratives through the NEON Intervention benefits people with experience of psychosis. The aim of the NEON-O and NEON-C trials is to evaluate the feasibility of conducting a definitive trial on the use of the NEON Intervention with people experiencing non-psychosis mental health problems and those who care for others experiencing mental health problems respectively.
Methods:
The NEON Trial will recruit 683 participants with experience of psychosis. The NEON-O Trial will recruit at least 100 participants with experience of non-psychosis mental health problems. The NEON-C Trial will recruit at least 100 participants with experience of caring for others who have experienced mental health problems. In all three trials, participants will be randomly allocated into one of two arms. Intervention arm participants will receive treatment as usual plus immediate access to the NEON Intervention for 1 year. Control arm participants will receive treatment as usual plus access to the NEON Intervention after 1 year. All participants will complete demographics and outcome measures at baseline, 1 week, 12 weeks and 52 weeks. For the NEON Trial, the primary outcome measure is the Manchester Short Assessment of Quality of Life at 52 weeks, and secondary outcome measures are the CORE-10, Herth Hope Index, Mental Health Confidence Scale and Meaning in Life Questionnaire. A cost-effectiveness analysis will be conducted using data collected through the EQ-5D-5 L and the Client Service Receipt Inventory.
Discussion:
NEON Trial analyses will establish both effectiveness and cost-effectiveness of the NEON Intervention for people with experience of psychosis, and hence inform future clinical recommendations for this population.
Trial registration:
All trials were prospectively registered with ISRCTN. NEON Trial: ISRCTN11152837 . Registered on 13 August 2018. NEON-C Trial: ISRCTN76355273 . Registered on 9 January 2020. NEON-O Trial: ISRCTN63197153 . Registered on 9 January 2020.
... In addition to the study findings, the guidelines are informed by existing literature from interactive television, companion applications and other salient works in HCI. The guidelines are presented as textual descriptions, the dissemination of study findings in this way is common practice in HCI and many examples can be found throughout the literature (see Rennick-Egglestone, 2014). ...
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.
... It also implicates a range of other conditions that affect the brain, including dementia and Alzheimer's disease, or brain injury acquired through a traumatic accident or a stroke. In the case of the latter, prior research suggests that the damage acquired through a stroke can lead to abilities that change unpredictably on a minute-by-minute basis, which can then cause frustration as particular interfaces becoming rapidly unusable as abilities change [34]. ...
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.
Visual Anatomy & Physiology combines a visual approach with a modular organization to deliver an easy-to-use and time-efficient book that uniquely meets the needs of today’s students–without sacrificing the comprehensive coverage of A&P topics required for careers in nursing and other allied health professions. The Second Edition addresses tough physiology topics with new and revised two-page modules and corresponding new Coaching Activities in MasteringA&P®. Brand-new end-of-chapter study and practice materials include a narrative Study Outline and comprehensive Chapter Review Questions. Module Reviews and Section Reviews, appearing throughout each chapter, give students additional tools for learning. In response to the strong demand from A&P instructors, a brand-new Visual Anatomy & Physiology Lab Manual uses the same visual approach and modular organization to help students succeed in the lab.
Interruptions have a profound impact on our attentional orientation in everyday life. Recent advances in mobile information technology increase the number of potentially disruptive notifications on mobile devices by an increasing availability of services. Understanding the contextual intricacies that make us receptive to these interruptions is paramount to devising technology that supports interruption management.
This thesis makes a number of contributions to the methodology of studying mobile experiences in situ, understanding receptivity to interruptions, and designing context-sensitive systems.
This thesis presents a series of real-world studies that investigate opportune moments for interruptions in mobile settings. In order to facilitate the study of the multi-faceted ways opportune moments surface from participants' involvement in the world this thesis develops:
- a model of the contextual factors that interact to guide receptivity to interruptions, and
- an adaptation of the Experience-Sampling Method (ESM) to capture behavioural response to interruptions in situ.
In two naturalistic experiments, participants' experiences of being interrupted on a mobile phone are sampled as they go about their everyday lives. In a field study, participants' experiences are observed and recorded as they use a notification-driven mobile application to create photo-stories in a theme park.
Experiment 1 explores the effects of content and time of delivery of the interruption. The results show that receptivity to text messages is significantly affected by message content, while scheduling one's own interruption times in advance does not improve receptivity over randomly timed interruptions. Experiment 2 investigates the hypothesis that opportune moments to deliver notifications are located at the endings of episodes of mobile interaction such as texting and calling. This notification strategy is supported by significant effects in behavioural measures of receptivity, while self-reports and interviews reveal complexities in the subjective experience of the interruption. By employing a mixed methods approach of interviews, observations and an analysis of system logs in the field study, it is shown that participants appreciated location-based notifications as prompts to foreground the application during relative 'downtimes' from other activities. However, an unexpected quantity of redundant notifications meant that visitors soon habituated to and eventually ignored them, which suggests careful, sparing use of notifications in interactive experiences.
Overall, the studies showed that contextual mediation of the timing of interruptions (e.g. by phone activity in Experiment 2 and opportune places in the field study) is more likely to lead to interruptions at opportune moments than when participants schedule their own interruptions. However, momentary receptivity and responsiveness to an interruption is determined by the complex and situated interactions of local and relational contextual factors. These contextual factors are captured in a model of receptivity that underlies the interruption process. The studies highlight implications for the design of systems that seek to manage interruptions by adapting the timing of interruptions to the user's situation. In particular, applications to manage interruptions in personal communication and pervasive experiences are considered.
Stroke is a major cause of physical disability for those that survive it. Traditionally, treatment of disability involves interaction with professional trained in the movement therapies. However, there is a growing body of research into interactive systems that are intended to provide support for rehabilitation, many of which draw on game-like elements to motivate engagement. A promising tactic to consider when designing such systems is the integration of knowledge from the movement therapies, and this paper is intended to provide support for this tactic. It contributes a detailed consideration of the structure of this knowledge within this domain, considers the challenges inherent in incorporating it into effective designs, and describes a conceptual framework which is intended to support this process. These contributions are illustrated in relation to two influential approaches to movement therapy, namely “Bobath” and the “Motor Re-Learning Program”.
There is strong evidence that all stroke patients should receive rehabilitation from a specialist multi-professional team but there is little research evidence to guide the treatment given. This is particularly important for physiotherapists, as many patients remain severely disabled after rehabilitation. Most physiotherapists in the UK probably use the Bobath approach. However, its theoretical framework is questioned by research findings. Nevertheless it does not necessarily follow that 'hands-on' physical therapies given within the Bobath approach are ineffective. Indeed some experimental studies have found that 'hands-on' physiotherapy has beneficial effects on neurophysiology. Controlled trials suggest that physical therapies might have beneficial effects on movement and functional ability but it is noteworthy that many of the primary studies did not investigate Bobath-type interventions. In the search for better outcomes for patients it is important that clinical reports of benefit from Bobath interventions are not ignored. A proposed way forward to improve the evidence base has been to unpack the 'black box' of UK conventional physiotherapy in enough detail for specific interventions to be evaluated for their purported effects and compared with each other for effectiveness. Research findings have revealed though that this approach, because of the sheer size and complexity of conventional physiotherapy, is unlikely to deliver on the research agenda if used alone. A complementary research approach will be to identify/develop and evaluate interventions explicity derived from emergent understanding of neurological impairment and neurological recovery and the means by which this might be promoted. Research findings from neuroscience suggest the possibility of exploiting neuroplasticity to enhance neurorecovery and several novel therapies are now being developed. It is important that physiotherapists develop closer collaboration with basic and clinical scientists to lead physiotherapy into an exciting phase of development which should result in physical therapies becoming even more effective than they already are.