Parental experiences of children with autoimmune encephalitis
Research type
Research Study
Full title
Experiences of care and adjustment to change in the carers of children with autoimmune encephalopathies: an Interpretative Phenomenological Analysis
IRAS ID
183932
Contact name
Philip Sharples
Contact email
Sponsor organisation
NHS Greater Glasgow and Clyde
Duration of Study in the UK
0 years, 8 months, 28 days
Research summary
What are the experiences of care and adjustment in parents/caregivers who have a child diagnosed with autoimmune encephalitis from hospital admission to community discharge?
Autoimmune encephalitis is a rare condition where antibodies attack the brain in error causing the brain to swell. Some children can experience changes in behaviour, mental state and thinking abilities, which can affect their ability to do activities they used to enjoy and their relationships with those around them. Despite these significant consequences of autoimmune encephalitis there has been no qualitative research exploring the views and experiences of parents of children who have autoimmune encephalitis. This study will attempt to explore the experiences of these parents, with regards to their own adjustment, from pre-hospital admission to community discharge. Additionally, parents views on current care provision for themselves and their children will be addressed.
Parents of children with autoimmune encephalitis who are currently or have been involved with the Fraser of Allander Neuroscience centre over the last 5 years will be eligible to participate in this study. 4-10 participants will be individually interviewed and asked questions about their experiences before and during hospital admission, during treatment, and discharge home from inpatient care. The interviews will be semi-structured, lasting for approximately 1 hour and 30 minutes and the information will be analysed using Interpretative Phenomenological Analysis (IPA) to identify shared themes from all of the interviews. It is anticipated that the results from this study will highlight important factors for supporting children diagnosed with autoimmune encephalitis and their caregivers. This information may be used by healthcare services to highlight any gaps in the service they currently offer to children and their families. It is expected that results from this study will be published in national journals and presented in local or national conferences.
REC name
West of Scotland REC 1
REC reference
15/WS/0259
Date of REC Opinion
3 Dec 2015
REC opinion
Favourable Opinion