Parents of children with multiple sclerosis have unique needs and problems.
A study exploring the difficulties parents experience when their child develops multiple sclerosis (MS) found that more support and education — from healthcare and school staff, as well as by parents themselves — is key to easing the burden of a child or teenager with this disease.
The study, “Parents’ Experience of Pediatric Onset Multiple Sclerosis,”performed by researchers at the University of Illinois at Urbana-Champaignand Massachusetts General Hospital, among others, is now being prepared for publication. In addition to identifying a need for information and education, the study also opened new research questions regarding children living with MS.
Researchers interviewed 21 parents of children with MS, and the National Multiple Sclerosis Society recently published some highlights from the interviews on its website. A key message to parents of newly diagnosed MS children that came in the study was that the process is worst in the early stages, a source of hope to other parents beginning the same journey.
The study shows that challenges exist during all phases of the process, starting before diagnosis and continuing once a diagnosis is set. Researchers particularly asked parents about issues experienced before receiving a diagnosis, the diagnosis itself, and about adapting to life with MS — including treatment, family life, school, living with MS over time, and advice for other parents.
Read Full Article: Parents of Young Multiple Sclerosis Patients Voice Needs and Concerns
|Read Full Article: Parents of Young Multiple Sclerosis Patients Voice Needs and Concerns|