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

BF Psychology

Sharples, Philip ; McMillan, Tom

University:University of Glasgow

Department:Institute of Health and Wellbeing

关键词: Autoimmune encephalitis, paediatric, caregiver, qualitative,adjustment, interpretative phenomenological analysis, brain injury, child, parent, mother, experience.;   

Others  :  http://theses.gla.ac.uk/7573/1/2016sharplesDClinPsy.pdf

来源: University of Glasgow

【 摘 要 】

Background: Autoimmune encephalitis (AE) occurs in response to an antibody-mediatedcentral 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 diagnosedwith 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 AEparticipated in a semi-structured interview exploring their experiences of caring for their child and service provision during acute care and post-discharge. InterpretativePhenomenological 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.