Related Experiment Video
Updated: Dec 23, 2025
The Multiple Sclerosis Performance Test MSPT: An iPad-Based Disability Assessment Tool
Published on: June 30, 2014
Families' Experience of Pediatric Onset Multiple Sclerosis
Theodore P Cross1, Alane K Shanks2,3, Lisa V Duffy4,5
11Children and Family Research Center, University of Illinois at Urbana-Champaign, 1010 W. Nevada St, Urbana, IL 61801 USA.
Insights
Parents shared their experiences coping with pediatric onset multiple sclerosis (POMS). Despite challenges, families adapted with support, finding benefits in treatments and community resources.
Area of Science:
- Neurology
- Pediatrics
- Psychology
Background:
- Pediatric onset multiple sclerosis (POMS) affects a small percentage of multiple sclerosis (MS) cases.
- Understanding family experiences is crucial for supporting children with POMS.
Purpose of the Study:
- To explore the lived experiences of parents navigating POMS in their children.
- To identify challenges, coping mechanisms, and support needs of families affected by POMS.
Main Methods:
- Qualitative study involving interviews with 21 sets of parents of children diagnosed with POMS.
- Data collected from two pediatric MS centers.
Main Results:
- Families faced significant stress, anxiety, and frustration related to diagnosis uncertainty, disease progression, and treatment effects (e.g., injections).
- Coping involved managing cognitive/physical symptoms at school, setting expectations, and addressing family demands.
- Support from physicians, the National MS Society, and the MS community was highly beneficial.
- Despite challenges, most families successfully adapted to POMS, benefiting from disease-modifying treatments (DMTs).
Conclusions:
- Families require comprehensive support to manage the multifaceted challenges of POMS.
- Effective coping strategies and community support are vital for successful adaptation.
- Further recommendations for improving family support systems are provided based on parental insights.
Abstract:
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.
Related Concept Videos
01:19Autism Spectrum Disorder
These core symptoms manifest differently among individuals, ranging from mild to severe. The disorder's complexity extends beyond its clinical presentation, encompassing a diverse range of biological, cognitive, and sociocultural influences.
01:29Psychological and Sociocultural Causes of Schizophrenia
01:35Pedigree Analysis