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.

A house, not a home? Examining the use of the private rented sector to resolve homelessness in Scotland

Changes to homelessness legislation in post-devolution Scotland have resulted in an expansion of rights for homeless households seeking formal assistance from local authorities. These changes have led to Scotland’s homelessness arrangements being considered among the most progressive in Europe. In recent years, however, the Scottish Government has increasingly promoted homelessness prevention and Housing Options approaches as a means by which homelessness might be avoided or resolved without recourse to statutory rights. As part of that, they have promoted greater use of the private rented sector (PRS) as a key housing option, with the potential to meet the needs of homeless households. The arguments made to support use of the PRS have much in common with arguments for privatisation in other areas of social policy, notably greater choice for the individual promoting better welfare outcomes, and competition among providers encouraging improvements in quality of service provision. Critics have argued that such benefits may not be realised and that, on the contrary, privatisation may lead to exclusion or act to worsen households’ outcomes. This thesis considers the extent to which the PRS has been utilised in Scotland to accommodate homeless households, and the consequences of this for their welfare. The thesis uses a combination of quantitative and qualitative methods. To examine trends in the use of the PRS, it presents quantitative analysis of the data on the operation of the statutory system and Housing Options arrangements, and of data from a survey of local authority homelessness strategy officers. To examine the consequences of this for homeless households, the thesis uses qualitative research involving face-to-face interviews with 35 homeless households across three local authority areas. This research considers the extent to which households’ experiences of homelessness, housing need and the PRS reflect the arguments presented in the literature, and how settled accommodation has impacted on households’ ability to participate fully in society. The research found an increasing but still limited role for the PRS in resolving statutory homelessness in Scotland, with indications that the PRS is being increasingly used as part of the Housing Options approach and as a means of resolving homelessness outside the statutory system. The PRS is being utilised to varying degrees across different local authority areas, and a variety of methods are being used to do so. While local authorities saw clear advantages to making greater use of the sector, a number of significant barriers including affordability, available stock and landlord preferences - made this difficult in practice. Research with previously homeless households in the PRS similarly found broadly positive experiences and views of the sector, particularly with regard to enabling households to access good quality accommodation in desirable areas of their choosing, with many households highlighting improvements relating to social inclusion and participation. Nevertheless, concerns around the security of tenure offered by the sector, repairs, service standards and unequal power relations between landlord and tenant persisted. As such, homeless households frequently expressed their decision to enter the sector in terms of a trade-off between choice and security.