Living with parental multiple sclerosis: children's experiences and clinical implications

Area of Science:

• Pediatric Health
• Family Studies
• Neurology

Background:

• Chronic illnesses significantly impact family dynamics.
• Health professionals require a comprehensive understanding of these effects.

Purpose of the Study:

• To explore the lived experiences of children with a parent diagnosed with multiple sclerosis (MS).
• To identify the challenges and coping mechanisms of children in families affected by MS.

Main Methods:

• Conducted exploratory, semi-structured interviews with eight children aged 7–14 years in Queensland.
• Utilized inductive analysis of verbatim interview transcripts.

Main Results:

• Identified key themes: changing roles and responsibilities, emotional impact, and coping strategies.
• Children reported assuming adult responsibilities, limiting their own developmental activities.
• Participants described the emotional and practical consequences of parental MS and their coping methods.

Conclusions:

• Emphasizes the need for healthcare providers to view multiple sclerosis as a family-wide condition, not just an individual diagnosis.
• Suggests occupational therapists can support families by facilitating occupation maintenance and providing access to resources.