Experiences of care and adjustment to change in caregivers of children with autoimmune encephalitis: an interpretative phenomenological analysis

Background: Autoimmune encephalitis (AE) occurs in response to an antibody-mediated central nervous system disease and can lead to significant neurodisability. Prior research on family adjustment has described a reciprocal relationship between caregiver functioning, distress and clinical outcome in parents and children with encephalitis. There has been no previous research exploring the experiences of caregivers with a child with AE. Aims: To explore the perspectives of parents and/or caregivers with a child diagnosed with AE regarding (i) their own adjustment from hospital admission to post-discharge, and (ii) their experiences of care and service provision. Methods: A purposive sampling approach was used. Five parents of children with AE participated in a semi-structured interview exploring their experiences of caring for their child and service provision during acute care and post-discharge. Interpretative Phenomenological Analysis (IPA) was used to analyse the transcripts. Main findings and conclusions: Four shared super-ordinate themes with related subthemes emerged: (a) uncertainty, (b) managing our recovery, (c) changes in my child, (d) experiences of service provision. Participants reported emotional distress, often underpinned by recurrent experiences of uncertainty, and ‘loss’ of the previous child, and mediated by coping strategies and social support. While an overall positive experience of inpatient services was reported, parents often perceived post-discharge services as lacking in co-ordination, communication and formal follow-up, resulting in unmet support needs. Implications and recommendations for services, practitioners and future research are discussed.

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.