“Living an Obstacle Course”: A Qualitative Study Examining the Experiences of Caregivers of Children with Rett Syndrome.
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2018
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International journal of environmental of research
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Abstract
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. Methods: We conducted a qualitative case
study to examine how 31 caregivers of children with Rett syndrome perceived living with their
children. Data were collected through in-depth interviews, focus groups, researchers’ field notes and
caregivers’ personal documents. A thematic analysis was performed following the Consolidated
Criteria for Reporting Qualitative Research (COREQ) guideline. Results: The experience of being a
caregiver of a child with Rett syndrome was expressed as being akin to an “obstacle course”, and was
described via three main themes: (a) looking for answers, with two subthemes identified, namely
‘the first symptoms’, and ‘the need for a diagnosis’; (b) managing day to day life, with the subthemes
‘applying treatments’, and ‘learning to care’; and (c) money matters. Conclusions: Rett syndrome
has a considerable impact on the lives of the caregivers involved. The health-care process and the
management of economic resources are some of the aspects highlighted by caregivers. These findings
have important implications for the planning of support services, health systems and health policies.
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Keywords
Rare disease, Rett syndrome, Caregivers, Qualitative research