Parental stress may link disease burden to self-esteem in pediatric MS

Indirect effects were seen for fatigue, processing speed, and disease severity

Written by Andrea Lobo, PhD |

A young girl hugs a parent in a home kitchen.

A child hugs a parent, reflecting the family support that may help shape psychological well-being in pediatric-onset multiple sclerosis. (Image by iStock)

  • Children with greater fatigue, slower processing speed, or more severe disease had higher levels of parental stress.
  • Parental stress significantly mediated the association between all three disease-related factors and children’s self-esteem.
  • The findings suggest that supporting parents’ emotional health may help promote better psychological outcomes and resilience in children with pediatric-onset MS.

Parental stress may help explain the link between disease-related difficulties and lower self-esteem in children and adolescents with pediatric-onset multiple sclerosis (POMS), a study in Israel found.

The findings suggest that higher fatigue, greater disease severity, and slower processing speed in children were each associated with greater parental stress. Greater parental stress was also associated with lower self-esteem in the children.

These “findings highlight parental stress as a robust pathway linking child disease burden to self-esteem,” the researchers wrote. “Addressing parent emotional state may improve outcomes and promote resilience in youth with POMS.”

The study, “FAMILY Matters: Parental Emotional State Mediates the Association Between Disease Burden and Child Self-Esteem in Pediatric-Onset Multiple Sclerosis,” was published in the Journal of Clinical Psychology in Medical Settings.

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Self-esteem challenges in pediatric MS

Multiple sclerosis (MS) is an autoimmune disease that causes progressive damage to the myelin sheath, a protective coating around nerve fibers. This damage can lead to symptoms such as movement problems, fatigue, and cognitive difficulties.

POMS is a rare form of MS in which symptoms begin before age 18. Symptoms and diagnosis often occur during early adolescence, a key period for developing identity and self-esteem. Physical and cognitive difficulties may increase vulnerability to low self-esteem.

Parents of children with POMS may also experience high levels of psychological distress and caregiver burden. These challenges may be related to the disease’s unpredictable course and the possibility of cognitive and physical difficulties.

The researchers examined whether parental emotional state might help explain the association between disease burden and self-esteem in children with POMS. They focused on fatigue, processing speed, and disease severity as POMS-related factors, and on perceived parental stress and well-being as possible pathways linking those factors to self-esteem.

The study enrolled 30 children and adolescents (63% girls) with POMS, ages 10 to 18 years. Their mean age at symptom onset was 13.93 years, and they had lived with the disease for a mean of 1.53 years.

Overall, validated measures showed that the participants had low levels of disease severity. However, 33% had clinically significant processing-speed difficulties, 67% had clinically significant fatigue, and all scored in the low self-esteem range on the Rosenberg Self-Esteem Scale.

Parents’ stress scores were moderately elevated, with 43% scoring above the clinical cutoff for significant stress. On a separate measure of well-being, 43% scored below the clinical threshold, indicating poor well-being.

“These findings suggest that a substantial proportion of parents in the sample experienced emotional distress,” the researchers wrote.

Parental stress emerged as a key link

The researchers then looked at how children’s disease-related difficulties were related to their parents’ stress and well-being, and whether parental emotional health was also linked to the children’s self-esteem.

More severe disease in children was significantly associated with greater parental stress and lower parental well-being. Better processing speed was significantly linked to lower parental stress and higher parental well-being, while greater fatigue was significantly linked to higher parental stress.

Parental stress significantly mediated the association between each of the three disease-related factors — fatigue, processing speed, and disease severity — and children’s self-esteem. In other words, the children’s disease-related difficulties were linked to their self-esteem partly through their association with parental stress.

For example, children with less fatigue or better processing speed had parents who reported lower levels of stress, which in turn was significantly associated with higher self-esteem in the children. Parental stress also appeared to play a role in the association between disease severity and children’s self-esteem, although its link with self-esteem was weaker.

The researchers also examined whether parental well-being played a similar role. This seemed to be true only for processing speed. Better processing speed was significantly linked to greater parental well-being, which in turn was significantly associated with higher self-esteem in children.

The findings “highlight the importance of including parents in psychosocial care frameworks, not only for their own benefit but as part of a holistic strategy to support children’s psychological adaptation to chronic illness,” the researchers wrote.

The team noted that the study was small and cannot prove cause and effect because it looked at participants at one point in time. The findings may also not apply as well to children with more advanced disability. Larger and more diverse studies are needed to confirm the findings.

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