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Paediatric Multiple Sclerosis: A Scoping Review of Patients' and Parents' Perspectives
Maria Luca1, Nerea Ortega-Castro2, Francesco Patti3
1Centre for Addiction, Via Pò 2, 95031 Adrano, Italy.
Insights
Paediatric-onset multiple sclerosis presents unique challenges for young patients and families. Despite the disease burden, qualitative insights reveal that children and parents can adapt, emphasizing the need for community and healthcare support to combat isolation.
Area of Science:
- Pediatric Neurology
- Qualitative Health Research
- Multiple Sclerosis Research
Background:
- Paediatric-onset multiple sclerosis (POMS) poses significant challenges due to unpredictable symptoms and uncertain prognosis.
- Understanding the lived experiences of young patients and their families is crucial for effective support.
- Existing literature lacks comprehensive synthesis of qualitative data on POMS perspectives.
Purpose of the Study:
- To synthesize qualitative evidence on the perspectives of patients and parents regarding paediatric-onset multiple sclerosis.
- To identify common themes and issues encountered throughout the POMS journey.
- To inform supportive care strategies for families affected by POMS.
Main Methods:
- Systematic literature search conducted on PubMed and CINAHL databases.
- Inclusion of studies reporting patient and/or parent perspectives on POMS.
- Qualitative data extraction and analysis guided by The Joanna Briggs Institute methodology.
- Eight relevant qualitative papers were selected and analyzed.
Main Results:
- Identified key issues in POMS: symptom onset, diagnostic process, diagnosis reaction, and disease management/acceptance.
- Confirmed the significant burden of multiple sclerosis on young patients and their families.
- Highlighted the capacity for adaptation and adjustment to POMS by patients and parents.
- Revealed experiences of solitude and rejection faced by affected families.
Conclusions:
- Families affected by POMS can achieve adjustment and adaptation to the disease.
- There is a critical need for community and healthcare professional support to mitigate feelings of isolation and rejection.
- Further research should focus on developing targeted interventions to enhance psychosocial well-being in POMS.
Abstract:
Dealing with paediatric-onset multiple sclerosis is particularly challenging for the young patients and their families, due to its unpredictable symptoms and uncertain outcome. This review aimed at synthesising the qualitative evidence regarding the perspectives about paediatric-onset multiple sclerosis, as expressed by the patients and/or their parents. A literature search was conducted on PubMed and CINAHL. The advanced multi-field search allowed to perform an abstract/title search in both databases, using keywords, combined through Boolean operators. Additional search strategies were adopted: searching the reference list of the selected papers; searching for key authors in the field. All the relevant papers were thoroughly revised using The Joanna Briggs Institute's data extraction form for qualitative evidence as a guidance. Eight papers were selected. The analysis of these papers allowed to identify some common issues pertaining paediatric-onset multiple sclerosis: (1) onset of symptoms, (2) diagnostic process, (3) reaction to the diagnosis, (4) management and acceptance of multiple sclerosis. The burden of multiple sclerosis was confirmed. However, the young patients and their parents can adjust to the disease. Both the community and the health care professionals must strive to prevent the families dealing with multiple sclerosis from experiencing solitude and rejection.
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