Table of Contents
Int. J. Environ. Res. Public Health, Volume 16, Issue 1 (January-1 2019)
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Cover Story (view full-size image) Rett syndrome is a rare disorder that occurs in 1 in every 10,000–15,000 children and may restrict [...] Read more. Rett syndrome is a rare disorder that occurs in 1 in every 10,000–15,000 children and may restrict physical function, communication and social participation. At present, there is no cure for this condition. Rather, medical attention is aimed at providing symptomatic relief for patients. Rett syndrome can impact the lives of the caregivers and family members. Thus, the experiences and individual perspectives of these individuals are relevant. Being a caregiver to a child with Rett syndrome has been expressed as an “obstacle course” involving the search for answers and the management of daily life. This investigation offers a description of the disorder and its impact from the point of view of caregivers. It focuses on aspects such as the search for a diagnosis, the ways in which families care for their children on a daily basis, and how the economic aspects influence the level of care. View this paper