Parents of children with Rett syndrome face difficulties with healthcare access, time management, bureaucracy, and getting social care, a Spanish study reports.
The study, “Challenges Affecting Access to Health and Social Care Resources and Time Management among Parents of Children with Rett Syndrome: A Qualitative Case Study,” was published in the International Journal of Environmental Research and Public Health.
Rett syndrome severely impairs neurological development and function, with symptoms affecting the physical abilities and social lives of patients, as well as the well-being of families. Yet, adequate care is often limited and difficult to access.
In fact, evidence suggests that patients with rare diseases face barriers in accessing medical care, with less than 10% receiving tailored treatment for their condition.
Researchers in Spain conducted an interview-based study to better understand the unique care needs of parents of children with Rett syndrome and the difficulties they encounter.
The scientists collected data on 31 participants (17 women and 14 men, mean age 45 years) belonging to 19 families. All participants were parents and/or legal guardians of children diagnosed with Rett. Twenty-six participants (83.9%) were married, two were widows/widowers (6.4%), and three were separated (9.7%).
Each family had a single case of Rett, corresponding to 19 children (14 girls and 5 boys), with a mean age of 12 years. They were diagnosed at a mean age of 4.5 years.
The interviews revealed that parents faced significant challenges in three main areas: essential health resources, bureaucracy and social care, and time management constraints.
Parents experienced difficulties in accessing health resources for a genetic diagnosis, a knowledgeable primary care professional, and specialized hospital care.
Genetic testing is costly, and access is variable across the public health system in Spain. Parents also described that genetic testing was biased toward female patients, since Rett is predominant in girls. As such, this could delay diagnosis for boys.
Parents considered primary care unsuitable, with professionals lacking understanding of the disorder and not specialized in Rett. In addition, specialized hospital care was concentrated in larger cities, leading to greater costs for families living in other regions.
Families said they struggled with getting social aid to acquire special equipment — including adapted beds and orthopedic materials — or to access resources, such as day centers, for their children.
Lack of easily accessible information and complex administration procedures led many parents to bear the financial costs themselves.
“The most frustrating thing is that any help that is proposed costs money, and you know that it is going to cost you almost more effort and time to fight it … very much,” one parent said.
Parents also described the pressure of time constraints to obtain a diagnosis, or during treatments and care processes. Because early disease detection and care can prevent greater disability, parents considered time management crucial for helping their child.
“You try to make do as best as you can … it’s non-stop, time is a necessary resource, like money, but, oh well, it’s what we have to live with,” a parent said.
In addition, parents also considered the time dealing with bureaucracy, administrative procedures, and waiting for public services as “lost time” or a “waste of time.”
Overall, these findings highlight the difficulties in health and social care encountered by parents caring for a child with Rett.
“Our findings shed light on how families navigate the health and social systems, with important implications for clinical practice,” the researchers wrote. “Understanding parents’ experiences can help foster more equitable and closer care of families.”
“Our study provides a basis for further studies that address the impact of [Rett syndrome] on parents’ lives, on their quality of life, and on the quality of health care received,” they concluded.
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