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- Title
Meaningful Improvements in Rett Syndrome: A Qualitative Study of Caregivers.
- Authors
McGraw, Sarah A.; Smith-Hicks, Constance; Nutter, James; Henne, Jeffrey C.; Abler, Victor
- Abstract
Background: Rett syndrome is a rare neurodevelopmental disorder primarily affecting females. This syndrome is associated with many comorbidities and impairments related to motor function, breathing, sleep, expressive language, and repetitive hand movements. The Rett Syndrome Behaviour Questionnaire (RSBQ) is one measure used to assess changes in Rett syndrome–related manifestations or core symptoms. Little is known about how caregivers think about meaningful changes in the items that make up the RSBQ scale. Methods: This qualitative study explored how caregivers of individuals with Rett syndrome viewed changes in the symptoms covered in the RSBQ. We conducted semistructured interviews with 40 caregivers and employed thematic analysis, identifying themes using an iterative process. Results: Two factors characterized caregivers' thoughts about meaningful changes in Rett syndrome manifestations. First, general features of these symptoms rendered them bothersome: the extent of bother compared to other symptoms, if or how they prevented desirable behaviors and their temporal qualities. Second, caregivers evaluated the meaning of improvements by considering the decrease in bother and the potential benefits of change. Improvements had social and psychological consequences for individuals with Rett syndrome and caregivers. In addition, implications for health, fine and gross motor skills, and communication were also substantial.
- Subjects
RETT syndrome; GROSS motor ability; FINE motor ability; CAREGIVERS; QUALITATIVE research
- Publication
Journal of Child Neurology, 2023, Vol 38, Issue 5, p270
- ISSN
0883-0738
- Publication type
Article
- DOI
10.1177/08830738231172066