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Needs and Experiences of Children and Adolescents with Pediatric Multiple Sclerosis and Their Caregivers: A
Shashank Ghai1,2,3, Elisabeth Kasilingam4, Roberta Lanzillo5
1School of Physical and Occupational Therapy, McGill University, Montréal, QC H3G 1Y5, Canada.
Insights
Pediatric multiple sclerosis (MS) significantly impacts children and adolescents, affecting school, social life, and mental health. Caregivers also face challenges, highlighting a need for better support systems for families managing pediatric MS.
Area of Science:
- Neurology
- Pediatrics
- Public Health
Background:
- Pediatric multiple sclerosis (MS) presents unique challenges for affected children and adolescents.
- Caregivers of children with MS experience significant burdens and unmet needs.
- A comprehensive understanding of these experiences is crucial for developing effective support strategies.
Purpose of the Study:
- To systematically review and evaluate the needs and experiences of children and adolescents with MS (CAMS).
- To assess the needs and experiences of caregivers of CAMS.
- To identify gaps in current support systems for families affected by pediatric MS.
Main Methods:
- Systematic literature review across 10 academic databases following PRISMA-P guidelines.
- Quality appraisal using the Mixed Method Appraisal Tool and GRADE-CERQual for confidence assessment.
- Narrative synthesis of data from 26 studies involving 2253 CAMS and 1608 caregivers.
Main Results:
- Pediatric MS negatively impacts CAMS' school performance, social relationships, mental health, and physical functioning.
- Fatigue is a major barrier, while social support is a key facilitator for CAMS.
- Caregivers report adverse effects on social functioning, mental health, and quality of life, with lack of awareness being a significant challenge.
Conclusions:
- This review provides the first evidence on the multifaceted needs and experiences of CAMS and their caregivers.
- Findings underscore the need for targeted psychological and social support for caregivers.
- Results can inform policy development to better support families navigating pediatric MS.
Abstract:
In the present study we conduct a systematic review to evaluate the needs and experience of people with pediatric multiple sclerosis (MS) and their caregivers. The literature search was conducted across 10 academic databases, adhering to PRISMA-P guidelines. Quality appraisal was conducted using the mixed method appraisal test for individual studies, and GRADE-CERQual to establish overall confidence of findings. Results were analyzed using a process of narrative synthesis. We identified 26 studies which included 2253 children/adolescents with MS (CAMS) and 1608 caregivers. MS was reported to negatively impact experiences for CAMS in domains such as of school performance, social relationships, mental health, and overall physical functioning. Specifically, fatigue and social support were reported as the most important barriers and facilitators for CAMS, respectively. In terms of caregiver experience, negative impacts were reported on social functioning, mental health, and quality of life. Additionally, lack of awareness concerning MS was one of the biggest challenges reported. Caregivers expressed needs for psychological and social support. This study provides the first evidence regarding the needs and experiences of CAMS and their caregivers. Findings can be used to address policy gaps for supporting families affected by pediatric MS.
