An exploration of treatment burden and patient capacity in people with stroke

Background and aims: Advances in modern medicine have led to improved outcomes after stroke, yet an increased treatment burden has been placed on patients. Treatment burden is the workload of health care for people with chronic illness and the impact that this has on functioning and well-being. Those with comorbidities are likely to be particularly burdened. Excessive treatment burden can negatively affect outcomes. Individuals are likely to differ in their ability to manage health problems and follow treatments, defined as patient capacity. The aim of this thesis was to explore the experience of treatment burden for people who have had a stroke and the factors that influence patient capacity. Methods: There were four phases of research. 1) A systematic review of the qualitative literature that explored the experience of treatment burden for those with stroke. Data were analysed using framework synthesis, underpinned by Normalisation Process Theory (NPT). 2) A cross-sectional study of 1,424,378 participants >18 years, demographically representative of the Scottish population. Binary logistic regression was used to analyse the relationship between stroke and the presence of comorbidities and prescribed medications. 3) Interviews with twenty-nine individuals with stroke, fifteen analysed by framework analysis underpinned by NPT and fourteen by thematic analysis. The experience of treatment burden was explored in depth along with factors that influence patient capacity. 4) Integration of findings in order to create a conceptual model of treatment burden and patient capacity in stroke. Results: Phase 1) A taxonomy of treatment burden in stroke was created. The following broad areas of treatment burden were identified: making sense of stroke management and planning care; interacting with others including health professionals, family and other stroke patients; enacting management strategies; and reflecting on management. Phase 2) 35,690 people (2.5%) had a diagnosis of stroke and of the 39 co-morbidities examined, 35 were significantly more common in those with stroke. The proportion of those with stroke that had >1 additional morbidities present (94.2%) was almost twice that of controls (48%) (odds ratio (OR) adjusted for age, gender and socioeconomic deprivation; 95% confidence interval: 5.18; 4.95-5.43) and 34.5% had 4-6 comorbidities compared to 7.2% of controls (8.59; 8.17-9.04). In the stroke group, 12.6% of people had a record of >11 repeat prescriptions compared to only 1.5% of the control group (OR adjusted for age, gender, deprivation and morbidity count: 15.84; 14.86-16.88). Phase 3) The taxonomy of treatment burden from Phase 1 was verified and expanded. Additionally, treatment burdens were identified as arising from either: the workload of healthcare; or the endurance of care deficiencies. A taxonomy of patient capacity was created. Six factors were identified that influence patient capacity: personal attributes and skills; physical and cognitive abilities; support network; financial status; life workload, and environment. A conceptual model of treatment burden was created. Healthcare workload and the presence of care deficiencies can influence and be influenced by patient capacity. The quality and configuration of health and social care services influences healthcare workload, care deficiencies and patient capacity. Conclusions: This thesis provides important insights into the considerable treatment burden experienced by people who have had a stroke and the factors that affect their capacity to manage health. Multimorbidity and polypharmacy are common in those with stroke and levels of these are high. Findings have important implications for the design of clinical guidelines and healthcare delivery, for example co-ordination of care should be improved, shared decision-making enhanced, and patients better supported following discharge from hospital.

Wondrous transformations: rereading and rewriting wonder in contemporary anglophone and francophone fairy tales

This thesis compares contemporary anglophone and francophone rewritings of traditional fairy tales for adults. Examining material dating from the 1990s to the present, including novels, novellas, short stories, comics, televisual and filmic adaptations, this thesis argues that while the revisions studied share similar themes and have comparable aims, the methods for inducing wonder (where wonder is defined as the effect produced by the text rather than simply its magical contents) are diametrically opposed, and it is this opposition that characterises the difference between the two types of rewriting. While they all engage with the hybridity of the fairy-tale genre, the anglophone works studied tend to question traditional narratives by keeping the fantasy setting, while francophone works debunk the tales not only in relation to questions of content, but also aesthetics. Through theoretical, historical, and cultural contextualisation, along with close readings of the texts, this thesis aims to demonstrate the existence of this francophone/anglophone divide and to explain how and why the authors in each tradition tend to adopt such different views while rewriting similar material. This division is the guiding thread of the thesis and also functions as a springboard to explore other concepts such as genre hybridity, reader-response, and feminism. The thesis is divided into two parts; the first three chapters work as an in-depth literature review: after examining, in chapters one and two, the historical and contemporary cultural field in which these works were created, chapter three examines theories of fantasy and genre hybridity. The second part of the thesis consists of textual studies and comparisons between francophone and anglophone material and is built on three different approaches. The first (chapter four) looks at selected texts in relation to questions of form, studying the process of world building and world creation enacted when authors combine and rewrite several fairy tales in a single narrative world. The second (chapter five) is a thematic approach which investigates the interactions between femininity, the monstrous, and the wondrous in contemporary tales of animal brides. Finally, chapter six compares rewritings of the tale of ‘Bluebeard’ with a comparison hinged on the representation of the forbidden room and its contents: Bluebeard’s cabinet of wonder is one that he holds sacred, one where he sublimates his wives’ corpses, and it is the catalyst of wonder, terror, and awe. The three contextual chapters and the three text-based studies work towards tracing the tangible existence of the division postulated between francophone and anglophone texts, but also the similarities that exist between the two cultural fields and their roles in the renewal of the fairy-tale genre.

Attachment Style, Therapeutic Alliance and Recovery in forensic mental health: the A-STAR study and clinical research portfolio

Background: Research suggests that forensic mental health services and staff can play an important role in the recognition and intervention with attachment-related behaviours to promote engagement and recovery. There is a lack of literature exploring whether the attachment needs of forensic service-users are recognised and, associations between attachment style and factors predictive of recovery. Aims: This study aimed to examine the extent to which service-users and keyworkers agree about service-users’ attachment and to identify whether attachment was associated with service attachment, working alliance, ward climate and recovery. Methods: Twenty-two service-users from low and medium secure forensic services, completed questionnaire measures of their attachment style, service attachment, working alliance, ward climate and experiences of recovery. Nineteen keyworkers completed measures of the service-users attachment style and working alliance. Results: There was strong agreement between service-users and staff for attachment anxiety (ICC=0.71) but poor agreement for attachment avoidance (ICC=0.39). Service attachment was associated with more positive perceptions of staff support (r=0.49) and avoidant attachment was associated with lower ratings of recovery (r=-0.51). Correlations between attachment style and service attachment, working alliance and ward climate were small and non-significant. Conclusions: A focus on staff training to support recognition of the nature and impact of avoidant attachment styles is indicated. The findings suggest that interventions to enhance staff - service-user relationships may be important for service attachment and indeed promotion of a recovery focused orientation amongst service-users high in avoidant attachment may improve wellbeing and outcomes.