Open AccessFamilies’ Experience of Pediatric Onset Multiple Sclerosis
Author(s) -
Theodore P. Cross,
Alane K. Shanks,
Lisa Duffy,
David Rintell
Publication year - 2019
Publication title -
journal of child and adolescent trauma
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.583
H-Index - 19
eISSN - 1936-153X
pISSN - 1936-1521
DOI - 10.1007/s40653-018-0243-7
Subject(s) - anxiety , multiple sclerosis , medicine , psychiatry , family medicine , disease , clinical psychology , psychology , pathology
This study interviewed parents to understand families' experience with pediatric onset multiple sclerosis (POMS), which make up 2.7% to 10.5% of all MS cases. 21 sets of parents of children with a confirmed diagnosis of POMS were recruited from two pediatric MS centers. Families experienced stress from the uncertainty prior to diagnosis, anxiety over symptoms and possible progression of the disease, frustrations with the uncertain effects of disease-modifying treatments (DMTs), and difficulties with injections. Families had to cope with cognitive and physical effects of POMS at school, decisions about expectations and independence for the child, and extra demands POMS placed on the family. Most parents reported benefitting from support from physicians, the National Multiple Sclerosis Society, and the MS community. Families had benefitted from DMTs, and, despite the stresses, most had adapted successfully to the illness. Advice from interviewees to other parents and recommendations for improving family support are presented.