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.

Handle with care: historical geographies and difficult cultural legacies of egg-collecting

This thesis offers an examination of egg-collecting, which was a very popular pastime in Britain from the Victorian era well into the twentieth century. Collectors, both young and old, would often spend whole days and sometimes longer trips in a wide variety of different habitats, from sea shores to moorlands, wetlands to craggy mountainsides, searching for birds’ nests and the bounty to be found within them. Once collectors had found and taken eggs, they emptied out the contents; hence, they were really eggshell collectors. Some egg collectors claimed that egg-collecting was not just a hobby but a science, going by the name of oology, and seeking to establish oology as a recognised sub-discipline of ornithology, these collectors or oologists established formal institutions such as associations and societies, attended meetings where they exhibited unusual finds, and also contributed to specialist publications dedicated to oology. Egg-collecting was therefore many things at once: a culture of the British countryside, from where many eggs were taken; a culture of natural history, taking on the trappings of a science; and a culture of enthusiasm, providing a consuming passion for many collectors. By the early twentieth century, however, opposing voices were increasingly being raised, by conservation groups and other observers, about the impact that egg-collecting was having on bird populations and on the welfare of individual birds. By mid-century the tide had turned against the collectors, and egg-collecting in Britain was largely outlawed in 1954, with further restrictions imposed in 1981. While many egg collections have been lost or destroyed, some have been donated to museums, including Glasgow Museums (GM), which holds in its collections over 30,000 eggs. As a Collaborative Doctoral Award involving the University of Glasgow and GM, the project outlined in this thesis aims to bring to light and to life these egg collections, the activities of the collectors who originally built them, and the wider world of British egg-collecting. By researching archival material held by Glasgow Museums, published specialist egg-collecting journals and other published sources, as well as the eggs as a material archive, this thesis seeks to recover some of the practices and preoccupations of egg collectors. It also recounts the practical activities carried out during the course of the project at GM, particularly those involving a collection of eggs newly donated to the museum during the course of this project, culminating in a new temporary display of birds’ eggs at Glasgow Museums Resource Centre.