Ghai, Shashank and Kasilingam, Elisabeth and Lanzillo, Roberta and Malenica, Masa and van Pesch, Vincent and Burke, Niamh Caitlin and Carotenuto, Antonio and Maguire, Rebecca (2021) Needs and Experiences of Children and Adolescents with Pediatric Multiple Sclerosis and Their Caregivers: A Systematic Review. Children, 8 (6). p. 445. ISSN 2227-9067

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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.

Item Type:	Article
Additional Information:	Cite as: Ghai S, Kasilingam E, Lanzillo R, Malenica M, van Pesch V, Burke NC, Carotenuto A, Maguire R. Needs and Experiences of Children and Adolescents with Pediatric Multiple Sclerosis and Their Caregivers: A Systematic Review. Children. 2021; 8(6):445. https://doi.org/10.3390/children8060445
Keywords:	pediatric multiple sclerosis; caregivers; burden; social support; quality of life;
Academic Unit:	Assisting Living & Learning,ALL institute Faculty of Science and Engineering > Psychology Faculty of Science and Engineering > Research Institutes > Human Health Institute
Item ID:	17143
Identification Number:	https://doi.org/10.3390/children8060445
Depositing User:	Rebecca Maguire
Date Deposited:	04 May 2023 10:47
Journal or Publication Title:	Children
Publisher:	MDPI
Refereed:	Yes
URI:	Publisher
Use Licence:	This item is available under a Creative Commons Attribution Non Commercial Share Alike Licence (CC BY-NC-SA). Details of this licence are available here

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