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

Sharples, Philip (2016) Experiences of care and adjustment to change in caregivers of children with autoimmune encephalitis: an interpretative phenomenological analysis. D Clin Psy thesis, University of Glasgow.

Abstract

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.

• Item Type: Thesis (D Clin Psy)
• Qualification Level: Doctoral
• Keywords: Autoimmune encephalitis, paediatric, caregiver, qualitative, adjustment, interpretative phenomenological analysis, brain injury, child, parent, mother, experience.
• Subjects: B Philosophy. Psychology. Religion > BF Psychology
• Colleges/Schools: College of Medical Veterinary and Life Sciences > School of Health & Wellbeing > Mental Health and Wellbeing
• Supervisor's Name: McMillan, Professor Tom, Dorris, Dr. Liam and Wilson, Dr. Sarah
• Date of Award: 2016
• Depositing User: Dr Philip Sharples
• Unique ID: glathesis:2016-7573
• Copyright: Copyright of this thesis is held by the author.
• Date Deposited: 22 Sep 2016 15:32
• Last Modified: 02 Oct 2016 12:25
• URI: https://theses.gla.ac.uk/id/eprint/7573