Development and Evaluation of an Assistive Prompting System for People with Traumatic Brain Injury

Cognitive deficits in executive functioning are among the most frequent sequelae after traumatic brain injury (TBI) at all levels of severity. Due to these functional deficits in cognition, individuals with TBI often experience difficulties in performing instrumental activities of daily living (IADL), especially those IADLs that involve a sequence of goal-directed actions. We obtained updated information on the use of assistive technology for cognition (ATC) through a survey study among twenty-nine participants with TBI. Results highlighted the needs to support the development and evaluation of ATC in assisting multi-step tasks. Cooking tasks were selected as a representative for they are cognitively demanding and have been identified essential for living independently. With the recent advance in sensing and smart home technologies, it’s possible to provide context-aware prompts with minimal user inputs. However, limited information is known regarding what types of context-aware prompts are really needed by people with TBI in completing cooking tasks. We compared the effectiveness and usability of current available prompting methods (e.g. paper-based prompting method and user-controlled method) among ten individuals with TBI in their home kitchens. We categorized the nature of problems faced by end-users with both prompting methods in cooking tasks and proposed relevant context-aware solutions. A test-bed Cueing Kitchen with sensing and prompting elements was developed to address these identified needs and to evaluate the feasibility of context-aware ATC interventions in assisting people with TBI with kitchen activities. Sixteen individuals with TBI participated in the study. Results showed that comparing to the conventional user-controlled method, the automatic method decreased the amount of external assistance required by participants, received higher ratings in perceived ease-of-use, and was helpful for decreasing user stress levels. However, the user-controlled method showed strengths in offering participants more flexibility and control on the timing of prompts. The contributions from this dissertation not only developed a context-aware prompting testbed and evaluated the feasibility of an automatic system, but also advanced the guidelines and potential solutions for future development of assistive prompting technology for people with cognitive impairments in sequential tasks

Développement de connaissances cliniques pour l’adaptation d’une technologie d’assistance cognitive pour soutenir des personnes ayant un traumatisme crânio-cérébral grave pendant la préparation de repas à domicile

Reconnu comme l’une des principales causes d’invalidité, le traumatisme crânio-cérébral (TCC) est une condition chronique pouvant occasionner des déficits physiques, cognitifs, émotionnels et comportementaux. Ces déficits interfèrent avec la capacité de la personne à s’engager dans ses activités quotidiennes, incluant des activités complexes comme la préparation de repas. Afin de soutenir cette population lors de la préparation de repas, une technologie d’assistance à la cognition (TAC) nommée Cognitive Orthosis for coOKing (COOK) a été développée en partenariat avec une résidence alternative pour des personnes ayant des incapacités graves à la suite d’un TCC. Suivant l’installation de COOK, trois résidents ont été en mesure de préparer des repas de façon sécuritaire et autonome. Toutefois, rien n’est connu sur la façon avec laquelle COOK pourrait répondre aux besoins des personnes ayant eu un TCC et vivant dans la communauté, ni comment cette technologie pourrait offrir de l’assistance personnalisée, minimale et contextualisée pour soutenir cette population. Cette thèse vise donc à développer des connaissances pour soutenir le développement d’une version bonifiée de COOK qui correspondrait aux besoins variés de ces utilisateurs, en répondant à trois objectifs : 1) définir les besoins d’assistance verbale des personnes ayant eu un TCC modéré à grave afin d’améliorer les capacités de personnalisation de COOK; 2) évaluer son utilisabilité et expérience utilisateur en laboratoire et en milieu réel; et 3) identifier les facilitateurs et obstacles pouvant influencer l’implantation de COOK auprès de personnes ayant eu un TCC et vivant dans la communauté. Suivant une démarche de conception centrée sur l’utilisateur, quatre études ont été réalisées : (1) une étude mixte avec transformation des données et analyse d’enregistrements vidéo pour documenter l’assistance verbale offerte à 45 participants ayant un TCC lors de la préparation d’un repas; (2) une étude d’utilisabilité mixte pendant laquelle 10 participants ayant un TCC ont testé COOK en laboratoire; (3) une étude mixte à sujet unique pour évaluer l’utilisabilité de COOK au domicile d’une personne ayant eu un TCC grave; et (4) une étude qualitative descriptive impliquant des personnes ayant eu un TCC, des personnes proches aidantes et des intervenants, pour explorer leurs perceptions quant aux facilitateurs et obstacles à l’implantation de COOK dans leur milieu respectif. La première étude a permis d’identifier neuf types d’assistance cognitive et un type d’assistance motivationnelle, et de documenter les difficultés pour lesquelles les ergothérapeutes offraient de l’assistance. Des enjeux d’utilisabilité ont ensuite été documentés pendant les essais en laboratoire (étude 2) et en milieu réel (étude 3), particulièrement au niveau du système de sécurité autonome. Plusieurs besoins de bonifications technologiques ont aussi été identifiés par les participants (études 2, 3 et 4). Enfin, la quatrième étude a identifié divers facilitateurs (p.ex. les fonctionnalités disponibles dans COOK) et obstacles (p.ex. la logistique entourant l’installation, l’apprentissage et le soutien) à l’implantation de TAC comme COOK pour soutenir les personnes vivant dans la communauté avec un TCC grave. Ultimement, ces connaissances cliniques pourront soutenir le développement continu et l’implantation de TAC comme COOK pour qu’elles répondent aux besoins d’une plus grande population.Defined as one of the main causes of disability, traumatic brain injury (TBI) is a chronic condition that can cause physical, cognitive, emotional, and behavioral deficits. These deficits may interfere with the person's ability to engage in daily activities, including complex activities such as meal preparation. To support this population during meal preparation, an assistive technology for cognition (ATC) called Cognitive Orthosis for coOKing (COOK) was recently developed in collaboration with an alternative residence for people with severe TBI. Following the installation of COOK, three residents were able to prepare meals safely and independently within their home. However, little is known about how COOK could meet the needs of people with TBI living in the community, or how it could provide personalized, minimal and contextualised assistance to support this population. This thesis aimed to develop a knowledge base to support the development of an improved version of COOK that would meet the varied needs of this new population, by meeting three objectives: 1) define the verbal assistance needs of people with moderate to severe TBI to enhance COOK's customization possibilities; 2) evaluate the usability and user experience of COOK in a laboratory setting and in a real-world environment; and 3) identify the facilitators and obstacles that may influence the implementation of COOK within the homes of people with TBI and in clinical settings. Integrated in a user-centered design process, four studies were conducted: (1) a study using conversion mixed design and video data analysis to document the verbal assistance provided to 45 participants with TBI during a meal preparation task; (2) a usability mixed-methods study during which 10 participants with TBI tested COOK in a laboratory setting; (3) a mixed-methods single-case study to assess the usability of COOK with a man with severe TBI living in the community; and (4) a qualitative descriptive study involving people with TBI, caregivers and healthcare professionals, to explore their perceptions of the facilitators and obstacles to the potential implementation of COOK in their respective settings. The first study identified nine types of cognitive assistance and one type of motivational assistance that were provided by occupational therapists to support people with TBI, and documented the difficulties for which these assistances were provided. Several usability issues were also documented when testing COOK in a laboratory setting (study 2) and in a real-world environment (study 3), particularly with the self-monitoring security system. Modification needs were also identified by the participants (studies 2, 3, and 4) to improve COOK. Finally, the fourth study highlighted many facilitators (e.g., the functionalities available in COOK) and obstacles (e.g., the logistics surrounding installation, learning and support of COOK) to consider before implementing ATCs like COOK. Ultimately, this knowledge base will support the continued development and the implementations of ATCs such as COOK to meets the needs of a larger population

Volet clinique de la conception et de l’évaluation d’une technologie d’assistance à la préparation de repas conçue avec et pour des personnes ayant subi un Traumatisme CranioCérébral (TCC) grave

Introduction : Au Canada, 100 000 personnes sont victimes d'un traumatisme craniocérébral (TCC) annuellement. Les 16-24 ans présentent l’un des taux d’incidence les plus élevés, ce qui signifie qu’une grande partie des victimes et ces personnes vivront en moyenne 50 ans avec les séquelles physiques et cognitives du TCC. De plus, 10% des personnes qui ont subi un traumatisme crânien souffriront des séquelles d’un TCC grave leur causant d’importantes difficultés de fonctionnement, particulièrement au niveau des activités plus complexes de la vie quotidienne, comme la préparation de repas. Les technologies d’assistance à la cognition (TAC) ont démontré leur pertinence pour faciliter le fonctionnement dans leurs habitudes de vie des personnes vivant avec les séquelles d’un TCC. Toutefois, aucune TAC spécifique à la préparation de repas et à cette clientèle n’est actuellement disponible. Méthodologie : La présente thèse présente le volet clinique de la conception d’une technologie d’assistance à la préparation des repas, conception réalisée dans le cadre d’un projet interdisciplinaire joignant les sciences de la réadaptation et de l’informatique. Cette technologie d’assistance nommée COOK (Cognitive Orthosis for coOKing) a été développée avec et pour des personnes qui ont subi un TCC grave vivant en résidence spécialisée. Une approche de conception centrée sur l’utilisateur a d’ailleurs été retenue et organise le projet en trois grandes étapes : 1- l’analyse des besoins 2- le design de la TAC et 3- l’évaluation de ses effets. Une analyse des besoins a d’abord été réalisée auprès des futurs utilisateurs ainsi qu’auprès des acteurs clés afin de dresser le profil des futurs utilisateurs, d’identifier les interventions pertinentes pour optimiser leur fonctionnement et pour ensuite traduire ces interventions en exigences cliniques pour faciliter le design. La phase de design a permis de développer une technologie basée sur les données probantes en réadaptation cognitive et répondant aux besoins spécifiques des futurs utilisateurs. Ces derniers ont d’ailleurs collaboré avec l’équipe tout au long de cette phase. COOK a ensuite été implanté chez les trois participants afin d’évaluer les effets de son utilisation à court et long terme (1, 3 et 6 mois post-implantation) et d’améliorer son utilisabilité. Résultats : Grâce à l’analyse des besoins, trois profils de futurs utilisateurs ont été dressés et les meilleures pratiques en réadaptation cognitive pour répondre à leurs besoins spécifiques ont été identifiées, facilitant ainsi la conception interdisciplinaire de COOK. Avec l’aide de COOK et d’interventions cliniques complémentaires, les trois participants ont tous repris la préparation des repas de façon sécuritaire. De plus, COOK a démontré une efficacité intéressante et les participants étaient satisfaits de la technologie, sauf auprès d’un participant qui ne voyait pas l’utilité pour lui. Conclusion : Cette technologie semble donc prometteuse pour la réadaptation et le maintien à domicile de clientèles présentant des incapacités cognitives. D’autres travaux seront nécessaires afin d’adapter cette technologie à d’autres clientèles et différents milieux de vie.Introduction: In Canada, 100,000 people suffer from traumatic brain injury (TBI) each year. The incidence is highest in individuals between 16-24 years of age, which means that people living with TBI will live an average of 50 years with the physical and cognitive sequelae. Of these individuals, 5% will have sustained a severe TBI, which will cause significant difficulties in their functioning, particularly in complex daily activities such as meal preparation. Assistive Technology for Cognition (ATC) has been shown to have high potential to facilitate the functioning of people with TBI. However, no ATC for meal preparation is currently available or suitable for this clientele. Methodology: As part of an interdisciplinary project, combining the disciplines of rehabilitation and computer sciences, COOK (Cognitive Orthosis for coOKing), an assistive technology to support meal preparation, was designed with and for people with severe TBI. This thesis presents the clinical aspect of the conception. For the design phase, a user-centered design methodology was chosen and organized into 3 main steps: 1- ATC needs analysis 2-design, and 3- evaluation of usability. As a result, a needs analysis was first conducted with future users and key stakeholders (3 future users, their relatives, the staff of the living environment and their healthcare professionals, and key external stakeholders). The design addressed the needs of residents with evidence-based practice guidelines in the cognitive rehabilitation field and these were translated into technological features. Future users were constantly consulted throughout the design process. Next, COOK was implemented with 3 future users in order to evaluate and improve its usability (1-, 3- and 6-months post-implementation). In addition, COOK demonstrated interesting efficiency and participants were satisfied with the technology, except for one participant who did not see how COOK could be of use for him. Results: The 3 participants with severe TBI have all resumed safe meal preparation with COOK. This technology has high potential for rehabilitation and home care for clients with cognitive impairments. Further work will be necessary to adapt this technology to other clienteles and different living environments

Occupational performance and information processing in adults with agitation following traumatic brain injury

Agitation following traumatic brain injury (TBI) is characterised by a heightened state of activity with disorganised information processing that interferes with learning and achieving functional goals. This thesis outlines a series of studies across four research phases, investigating how occupational performance of adults with TBI is affected by agitated behaviour and information processing difficulties. Clinicians report the presence of agitation interferes with engagement in therapy and achievement of rehabilitation goals. Research Phase One used a retrospective chart review of 80 adults with severe TBI to identify a high incidence of agitated behaviour during inpatient TBI rehabilitation. Agitated behaviour was associated with lengthier rehabilitation admission, prolonged duration of post-traumatic amnesia (PTA), and poor cognitive functioning at discharge. The association between agitation and poor cognition persisted for at least two years after discharge, highlighting the significant impact of agitated behaviour on people’s ability to relearn cognitive skills for daily function. These initial research findings directed subsequent research phases, in which an information processing model was adopted to examine application of cognitive strategies during occupational performance. An emerging occupational therapy assessment, The Perceive, Recall, Plan and Perform (PRPP) System of Task Analysis, was selected as the primary method for evaluating how application of cognitive strategies during occupational performance is affected in agitated patients. Clinical utility of this measure was established in a case study of an adult demonstrating severely agitated behaviour during inpatient TBI rehabilitation, followed by examination of instrument reliability and validity with ten experienced occupational therapists and five adults with agitated behaviour following brain injury. The PRPP System of Task Analysis emerged as a valid and reliable method for determining strategy application deficits during occupational performance of adults with agitated behaviour, in acute stages of TBI rehabilitation. Consistent patterns of processing deficits were related to the Perceive and Recall Quadrants of the PRPP System. The assessment tool forms part of a dynamic, interactive assessment and intervention system. The PRPP System of Intervention was evaluated in the final research phase, using an experimental single case design with replication across eight adults. The effectiveness of PRPP Intervention was examined in comparison to conventional occupational therapy in an ABAB design. Efficacy of the PRPP Intervention was demonstrated, with patients applying significantly more information processing strategies to occupational performance tasks during PRPP Intervention than during conventional occupational therapy sessions. Agitated behaviour concurrently reduced over the period of the study. Relationships between information processing and agitated behaviour are hypothesised

Occupational performance and information processing in adults with agitation following traumatic brain injury

Agitation following traumatic brain injury (TBI) is characterised by a heightened state of activity with disorganised information processing that interferes with learning and achieving functional goals. This thesis outlines a series of studies across four research phases, investigating how occupational performance of adults with TBI is affected by agitated behaviour and information processing difficulties. Clinicians report the presence of agitation interferes with engagement in therapy and achievement of rehabilitation goals. Research Phase One used a retrospective chart review of 80 adults with severe TBI to identify a high incidence of agitated behaviour during inpatient TBI rehabilitation. Agitated behaviour was associated with lengthier rehabilitation admission, prolonged duration of post-traumatic amnesia (PTA), and poor cognitive functioning at discharge. The association between agitation and poor cognition persisted for at least two years after discharge, highlighting the significant impact of agitated behaviour on people’s ability to relearn cognitive skills for daily function. These initial research findings directed subsequent research phases, in which an information processing model was adopted to examine application of cognitive strategies during occupational performance. An emerging occupational therapy assessment, The Perceive, Recall, Plan and Perform (PRPP) System of Task Analysis, was selected as the primary method for evaluating how application of cognitive strategies during occupational performance is affected in agitated patients. Clinical utility of this measure was established in a case study of an adult demonstrating severely agitated behaviour during inpatient TBI rehabilitation, followed by examination of instrument reliability and validity with ten experienced occupational therapists and five adults with agitated behaviour following brain injury. The PRPP System of Task Analysis emerged as a valid and reliable method for determining strategy application deficits during occupational performance of adults with agitated behaviour, in acute stages of TBI rehabilitation. Consistent patterns of processing deficits were related to the Perceive and Recall Quadrants of the PRPP System. The assessment tool forms part of a dynamic, interactive assessment and intervention system. The PRPP System of Intervention was evaluated in the final research phase, using an experimental single case design with replication across eight adults. The effectiveness of PRPP Intervention was examined in comparison to conventional occupational therapy in an ABAB design. Efficacy of the PRPP Intervention was demonstrated, with patients applying significantly more information processing strategies to occupational performance tasks during PRPP Intervention than during conventional occupational therapy sessions. Agitated behaviour concurrently reduced over the period of the study. Relationships between information processing and agitated behaviour are hypothesised

Virtual Reality: An Evidence-Based Guide for Occupational Therapy

Problem: Virtual reality (VR) is an emerging technology that serves to position the user in control of a virtual environment to maximize interest and function. VR is a context for intervention included in the Occupational Therapy Practice Framework: Domain and Process 3rd edition (OTPF-3; AOTA, 2014). It is crucial that occupational therapy (OT) practitioners enhance their knowledge about VR technology used by their clients to provide effective client-centered practice (AOTA, 2010). There is a lack of organization of the literature and research evidence regarding the use of VR as an intervention modality. While there has been a significant increase in recent literature supporting the use of VR in OT, there is a need for manuals and resources to guide clinicians in using VR as a therapeutic modality (Levac & Miller, 2013; Proffitt & Lange, 2015). Methods: An extensive literature review for articles regarding the use of the Xbox Kinect and Nintendo Wii within OT was conducted using five databases. Relevant data was extracted from each article related to the use of the Xbox Kinect or Nintendo Wii in intervention to synthesize the findings into charts. The construction of the charts followed the organization of the OTPF-3 (AOTA, 2014). Product: The authors of this product created an evidence-based resource to guide OT practitioners\u27 use of VR. The intended purpose of this product, Virtual Reality: An Evidence-Based Guide, is to assist OT practitioners\u27 adaptation and/or modification of VR activities to address individual client needs. Using this product as a guide to current knowledge and evidence regarding intervention in the context of VR, OT practitioners will be better equipped to make safe and effective choices. To further support development of literature regarding VR, the authors of this product recommended areas for future research

Participation-focussed evaluation: Impact on practice

Evaluation is a keystone in the process of rehabilitation that is used to plan and monitor holistic, client-centred, goal-directed programs. However, many common assessment tools do not fit well with the specific expertise of occupational therapists (OTs). Dynamic assessment uses interactions with clients as a context to both observe current performance and test possibilities for intervention. In this way, OTs may substantiate their clinical reasoning. Methods. This study aimed to examine OTs’ implementation of a dynamic assessment of participation called COMPLEAT©. Participants were 14 OTs with varied experience, and 29 of their younger adult (<65 years) clients with diverse aetiologies and sequelae of brain injury. Data were collected from multiple sources in a process from introducing the OTs to COMPLEAT© and providing basic training, to interpreting their observations. Two phases of analyses examined the sociocultural influences on the implementation of COMPLEAT©, and the strategies used with clients of varying levels of participation restriction. Results. From a sociocultural perspective, the OTs (i) facilitated their clients’ participation through both direct responses and enabling environmental supports, (ii) brought to the process experiences and views on working with clients and using standardised assessments, and (iii) utilised COMPLEAT© according to their roles and experience. Overall, they facilitated participation using complex combinations of responses according to clients’ levels of participation restriction. Conclusions. Dynamic assessment, and COMPLEAT© in particular, has application to substantiating OTs’ clinical reasoning and expertise in participation. With this evidence, OTs might promote a focus on participation within their rehabilitation teams, consolidate their teams’ perceptions of their roles, and further develop assessments that support the planning and implementation of interventions consistent with the theoretical foundations of OT

Adaptation of informal care relationships following Acquired Brain Injury

The number of informal carers in the UK is rising, yet the dynamics of care within informal care relationships remain poorly understood. The present research examined adaptation of informal care relationships affected by Acquired Brain Injury. The research addresses four pairs of questions: (1a) Are there any disagreements and/or misunderstandings between carers and people with Acquired Brain Injury (PwABI) regarding carer identity? (1b) How can the pattern of divergences be explained? (2a) Are there any disagreements and/or misunderstandings between carers and PwABI regarding PwABI identity? (2b) How can the pattern of divergences be explained? (3a) What strategies do carers and PwABI use in collaboration on a joint task? (3b) Is the type of input provided by carers on the joint task comparable to scaffolding as described in the child development literature? (4a) What happens when carers and PwABI collaborate to fill in the Disability Living Allowance (DLA) claim form? (4b) Why do carers see more disability than PwABI when filling in the DLA form? Four mixed-method data sets were used to answer these questions: (1) numerical ratings given by PwABI and carers to map out convergences and divergences (2) videos of discussions between participants and researcher during rating tasks (3) videos of carers and PwABI engaging in a joint task - planning inviting a friend or relative round for a meal and (4) videos of carers and PwABI filling in part of the DLA claim form. All data was collected from the same 28 PwABI/carer dyads who were two or more years post injury. Chapter 4 addresses questions 1a and 1b. Carers’ and PwABIs’ perspective ratings revealed a number of disagreements regarding carer identity. Carers perceived themselves negatively compared to their partners’ view of them. Regarding question 1b, carers feel negatively about themselves due to difficulties in the transition to the role of ‘carer’. They experience a lack of recognition for this caring role as a result of concealing the burden of care. Carers require more long term support from health services to help them achieve recognition for their role, such as facilitating attendance at support groups. Chapter 5 addresses questions 2a and 2b. Carers’ and PwABIs’ perspective ratings revealed only one disagreement and corresponding misunderstanding regarding PwABI identity. Regarding question 2b, alignment was found between the perspectives of carers and PwABI regarding PwABI due to the relational rating method used. It is carer identity which is the source of most divergences of perspective, not PwABI identity as commonly assumed. Using a relational rating method shows promise as a tool to explore perspectives as it treats all viewpoints as equal and avoids pathologising the perspective of PwABI. Chapter 6 addresses questions 3a and 3b. Analysis of strategies shows that completing a joint task is a collaborative process. Carers direct the background of the task but PwABI are in charge of the foreground, making task decisions. However, carers dominate the process and control where and how PwABI contribute. Regarding question 3b, the interaction meets the criteria for scaffolding in the strategies chosen and the flexibility of collaboration. However, removal of supports is often an unrealistic goal, leading to frustration in carers. Examination of processes of collaboration has elucidated the strategies used by carers and PwABI and can enhance theoretical discussion of the applicability of the scaffolding metaphor for a cognitively impaired adult sample. Chapter 7 address questions 4a and 4b. Disagreements were frequent when completing the DLA form. Contestations were almost exclusively in the direction of carers seeing greater disability than PwABI. Regarding question 4b, carers see greater disability due to the communication required to complete the form. Dyads are forced to confront disability, a pattern of interaction they avoid in everyday life. Carers marginalise PwABI point of view and position themselves as ‘expert’ on the PwABI. Differences in frames of reference regarding audience, aim and scope lead carers to maximise the disability and PwABI to minimise this. The impact of completing complex forms on relationships and identity needs to be considered during development of disability benefit assessment methods. A relational approach which studies both halves of informal care partnerships simultaneously allows us to go beyond outcomes of ABI and affords a greater understanding of processes of adaptation.

Behavioural Approaches in Neuropsychological Rehabilitation

The potential of behavioural approaches for improving the lives of people with acquired brain injury is immense. Here that potential is laid out and explored with a thoroughgoing regard for clinical practice and the theoretical frameworks that underpin that practice. This book will prove an invaluable resource for clinical psychologists and the whole range of therapists working with patients suffering from acquired brain damage