Seeking connectedness post-stroke: an existential perspective on lived experiences of working-age men using grounded theory

Stroke, or cerebral vascular accident (CVA), is a type of acquired brain injury (ABI). It is a leading cause of disability, with over 1.2 million survivors currently living in the UK. Age at onset has dropped over recent decades, with men at higher risk of having stroke at a younger age than women. The biomedical model is crucial for stroke survival. However, psychosocial factors in determining progress with rehabilitation have been increasingly recognised, along with stroke literature pointing towards the (less widely acknowledged) significance of existential factors. Ten male stroke survivors of working age with mild to moderate stroke-related impairments were recruited through noticeboard advertising at a branch of Headway (a leading ABI charity). Participant ages at onset of stroke ranged from 38 to 60 years, with time post-injury ranging from 1 to 10 years. Participants were individually interviewed using a semi-structured interview schedule. Analysis of the interview data was guided by grounded theory methods described by Corbin and Strauss. The theoretical model generated from the data outlines a process comprising three components: ‘experience’ of enduring otherness, which can lead to ‘outcome’ of experiencing belongingness, through ‘action’ of seeking connectedness (which was selected as the core category of the theoretical model). Furthermore, this process of seeking connectedness unfolds across four domains of lived experience; namely, the physical, psychological, social, and the philosophical, with each domain having dimensionality of alienation vs. integration; acceptance-resignation vs. defiance; isolation vs. participation; and pointlessness vs. meaningfulness, respectively. The model goes beyond the biopsychosocial perspective to include an existential viewpoint (under the philosophical domain). Rather than being diagnoses-focused, the model offers a framework for a formulation-based understanding of lived experiences and meaning-making for working-age male stroke survivors. Further work is required to ensure the validity of the model and its applicability to a wider stroke population

Analyzing Patient Trajectories With Artificial Intelligence

In digital medicine, patient data typically record health events over time (eg, through electronic health records, wearables, or other sensing technologies) and thus form unique patient trajectories. Patient trajectories are highly predictive of the future course of diseases and therefore facilitate effective care. However, digital medicine often uses only limited patient data, consisting of health events from only a single or small number of time points while ignoring additional information encoded in patient trajectories. To analyze such rich longitudinal data, new artificial intelligence (AI) solutions are needed. In this paper, we provide an overview of the recent efforts to develop trajectory-aware AI solutions and provide suggestions for future directions. Specifically, we examine the implications for developing disease models from patient trajectories along the typical workflow in AI: problem definition, data processing, modeling, evaluation, and interpretation. We conclude with a discussion of how such AI solutions will allow the field to build robust models for personalized risk scoring, subtyping, and disease pathway discovery

Sudden death processing: an ethnographic study of emergency care

The following doctoral thesis provides an ethnographic account of sudden deathwork performed by emergency personnel. The study centres on three accident and emergency departments in the North East of England. Sudden death practices and perceptions are revealed using thick description from focus groups, narratives and informant accounts. Three emergency disciplines: accident and emergency nurses, police traffic officers and paramedics provide the backdrop to describing three sudden death trajectories, which take the dead body from a state of collapse to a mortuary. Particular attention is paid to the significance of status passage as a temporal dimension of deathwork with due consideration being given to the concept of body handling as 'dirty work'. A feminist concept of embodiment challenges the dominant discourse of the death processing industry in relation to beneficence and non- maleficence for those who are left behind to grieve. The theatrical representation of the body to relatives is discussed within a dramaturgical frame, questioning what is appropriate and achievable within the boundaries of an emergency care environment. An exploration of the roles of emergency personnel illuminates problems of dealing with a phenomenon, which annihilates the possibility of a sense of order and emotionally incapacitates emergency personnel. The procedural base to sudden death is presented through accounts of emergency personnel contact with human suffering and emotional pain with the intention to build a substantive theory of a sudden death milieu. Finally, Schutzian relevances highlight key concepts of significance within the data demonstrating how, despite an evidence-base to practice, some myths are highly influential in shaping the behaviours of emergency personnel throughout the sudden death event. It is hoped that insight gained may provide a catalyst to inform change where needed, in service provision and enhance interprofessional working relationships

Evaluation Of The Matadoc And Comparison Of Auditory Musical, Non-Musical, And Live Music Therapy Stimuli To Increase Awareness And Sense Of Self In Patients With Moderate And Severe Dementia: An Exploratory Case Study

Background: The severe stage of dementia (SSD) can cause the loss of self-awareness, affecting the proper assessment, treatment, and care. The Music Therapy Assessment Tool for Awareness of Disorders of Consciousness (MATADOC) is a validated and reliable tool to measure awareness in DOC populations and it might be able to track awareness levels in people with SSD. Also, there is a need to identify effective treatments with people with SSD since pharmacological treatments have shown limited and even negative results. Both live music therapy and music listening of recorded songs have evidence of positive effects. Purpose: The purpose of this study is twofold: 1) To explore the use of the MATADOC for the assessment of patients with advanced dementia, 2) To compare the effects of live music therapy, recorded songs, and simulated presence therapy on increasing MATADOC scores and signs of an enhanced sense of self. Method: A case study with four participants was conducted by a graduate student. Participants underwent 4 sessions of baseline assessment with the MATADOC. Afterward, each participant completed a 30-minute minute session of listening of recorded songs, live music therapy, and auditory simulated presence therapy, in a different order, and each one on a different day. Each condition was immediately followed by a single MATADOC session as a post-test. All the sessions were recorded on video for behavioral/thematic analysis. Caregivers were interviewed to provide reports. Results: Most of the items of the MATADOC showed consistency with the level of deterioration of dementia. Two items of intentional behavior and non-verbal communication were consistently high with the four participants. While, the vocalization and the emotional response items showed consistency with the type of dementia, vocal/speech health, or location of brain damage. The protocol appeared to increase arousal, verbalizations, and/or mood. The researcher identified 18 adaptations or considerations to better fit the MATADOC to the dementia population. The musical conditions showed a better response in 100% of participants over control. Live music therapy showed a better response in 3 out of 4 participants and listening to recorded songs was better for the other remaining participant. Conclusion: MATADOC might be able to identify awareness deficits with people with SSD, but it could be improved by including cognitive, sensory, and declining factors appropriate for the dementia population. The positive effects of live music therapy could be addressed to its flexibility and multimodal approach suited to be adapted to the individual strengths and needs of the participants. Listening of recorded songs appeared as an important treatment but with risks of harm. Five recommendations for future research were identified and outlined

Acquired brain injury and the emotional, behavioural and cognitive sequelae : the family experience

Acquired brain injury (ABI) can be a sudden, dramatic and sometimes fatal event that instantly disrupts the lives of the patient and their families. ABI causes a variety of deficits including motor, cognitive, functional, emotional and behavioural. Whilst the extent of these deficits and their recovery may vary, and the affect of these injuries on the family has been the subject of much research over the past three decades, the specific impact that challenging behaviour has as a consequence of the ABI however, is sparse. This thesis will present the findings ofa descriptive phenomenological study which set out to describe the experiences of those immediate family members of persons who have suffered acquired brain injury and present with challenging behaviours. Five carers who met the inclusion criteria participated in the study and were recruited from a regional neuroscience centre. The experiences were collected through in-depth, face-to-face semistructured interviews with family members of persons with acquired brain injury. The interviews were recorded and transcribed verbatim to provide textual descriptions of the family members' experiences. Analysis provided richdescriptions of the family members' experiences. Seven interrelated themes emerged through data analysis: one theme described the challenging behaviours of the people with acquired brain injury and six themes describe the experiences of the family members; emotional turmoil that these behaviours engendered, a profound sense of loss, concerns for the future for themselves as well as theinjured, a sense of loneliness, the affect on family functioning and finally the family members coping and adapting to the behaviours. The interview data also revealedthat with time the experiences expressed were not dissipated. This study contributes to healthcare providers' understanding and knowledge of families experience of living with a person with acquired brain injured and their cognitive, emotional and behaviour sequelae, and supports the need for continued research in this area