Parental experiences of having a child with CLN3 disease (juvenile Batten disease) and how these experiences relate to family resilience.

ABSTRACT:

Background

CLN3 disease is a neurodegenerative condition presenting in the first decade of life typically leading to death in the third decade. The earliest symptom is rapidly progressive visual impairment followed by intellectual and motor impairments, epilepsy and behavioural disturbances. There are limited data on how the condition affects the family system or the role of family resilience in paediatric neurodegenerative diseases.

Methods

Semi-structured interviews were conducted with eight parents (five mothers and three fathers) of five children with CLN3. Interview questions focused on the experience of having a child with CLN3, its impact on the family system as well as the concept of family resilience. Data were analysed via thematic analysis.

Results

The them

SUBMITTER: Krantz M 

PROVIDER: S-EPMC9541062 | biostudies-literature | 2022 Sep

REPOSITORIES: biostudies-literature