Palacios-Ceña, Domingo

Background: Rett syndrome has considerable effects on the quality of life of affected children, impairing everyday activities and potentially impacting the life of both the caregivers and the family. Our aim was to explore the experiences of a group of caregivers of children with Rett syndrome with regards to living and caring for their children.

The experience of nursing home (NH) admission has a significant impact on older adults and their relatives. The aim of the current study is to describe the life experiences of female family caregivers (N = 20) after long-stay NH admission of their relative. A qualitative phenomenological approach was followed with purposeful sampling. Data were collected over 18 months using unstructured interviews, letters, and diaries and were analyzed using systematic text condensation analysis.