Ghai, Shashank, Kasilingam, Elisabeth, Lanzillo, Roberta, Malenica, Masa, van Pesch, Vincent, Burke, Niamh Caitlin, 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 |
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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: | 10.3390/children8060445 |
Depositing User: | Rebecca Maguire |
Date Deposited: | 04 May 2023 10:47 |
Journal or Publication Title: | Children |
Publisher: | MDPI |
Refereed: | Yes |
Related URLs: | |
URI: | https://mu.eprints-hosting.org/id/eprint/17143 |
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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