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.

Negative symptoms of schizophrenia and psychosocial treatment: thematic analysis of stakeholders’ perspectives

Objectives. Recent literature indicates variance in psychosocial treatment preferences for negative symptoms of schizophrenia. Attempts at defining therapeutic aims and outcomes for negative symptoms to date have not included major stakeholder groups. The aim of the present study was to address this gap through qualitative methods. Design. Thematic Analysis was applied to qualitative semi-structured interview data to gather the opinions of people who experience negative symptoms, carers, and healthcare professionals. Participants were recruited from two mental health sites (inpatient/community) to increase generalisability of results. Ten people participated in the research. Methods. Semi-structured interview scripts were designed utilising evidence from the review in Chapter 1 of effective psychosocial intervention components for specific negative symptoms. Interviews were audio recorded and transcribed verbatim. Thematic analysis was employed to analyse data. Results. A common theme across groups was the need for a personalised approach to intervention for negative symptoms. Other themes indicated different opinions in relation to treatment targets and the need for a sensitive and graded approach to all aspects of therapy. This approach needs to be supported across systemic levels of organisation with specific training needs for staff addressed. Conclusions. There is disparity in treatment preferences for negative symptoms across major stakeholders. The findings suggest an individualised approach to intervention of negative symptoms that is consistent with recovery. Implementation barriers and facilitators were identified and discussed. There remains a need to develop a better understanding of treatment preferences for patients.