Exploring Needs of Children experiencing Parental Young Onset Dementia
Research type
Research Study
Full title
“Exploring the Psychological Needs of Children experiencing Parental Young Onset Dementia (YOD)”
IRAS ID
328994
Contact name
Sarah Butchard
Contact email
Duration of Study in the UK
1 years, 11 months, 30 days
Research summary
The aim of this study is to explore the psychological needs of children with parents diagnosed with YOD and consider implications for service development. This study will develop an understanding of children’s needs when living with a parent with YOD, by conducting narrative interviews with young people with dementia or their partners, as well as their children. Remote or face-to-face interviews will be offered to eligible participants. Interviews will explore the experiences and psychological needs of children experiencing parental YOD, from the family perspective. All interviews will be recorded and transcribed. The data will be analysed using Narrative Analysis in order to capture individual stories by developing themes. A total of 10-12 people will be recruited, comprising of 5-6 children with parents with YOD and 5-6 people diagnosed with YOD or their partners. Participants will be recruited through local NHS services and support groups, such as Join Dementia Research, as well as using social media platforms. Such interviews will elicit information around the impact of the diagnosis on the child’s psychological functioning from the family perspective, as well as consider how mental health provisions could be tailored to meet the specific needs of such children.
REC name
London - Fulham Research Ethics Committee
REC reference
23/LO/0788
Date of REC Opinion
6 Nov 2023
REC opinion
Further Information Favourable Opinion