OTCohortJournal of applied research in intellectual disabilities : JARID2023

The comparison of expressed emotion of parents of individuals with fragile X syndrome to other intellectual disabilities.

Jeanine Coleman, Talia Thompson, Karen Riley and 5 others

PMID 36647196

WHAT IT FOUND

Expressed emotion did not differ between parents of children with fragile X, Down syndrome, or other intellectual disabilities.

About 44% of caregivers showed high levels, driven by worry and self-sacrifice rather than criticism. Mothers reported significantly higher levels than fathers.

Key findings

01There were no significant differences in expressed emotion between the fragile X, Down syndrome, and other/idiopathic intellectual disability subgroups.

02Approximately 44% of the pooled sample showed high expressed emotion, with 48% in fragile X, 40% in Down syndrome, and 46% in other/idiopathic groups.

03Mothers were significantly more likely to show high expressed emotion than fathers, though the small number of fathers limits interpretation.

STILL TO COME

How it was doneWhat they foundWhat it means for OTs

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What it does not show

The sample included very few fathers (23 of 152), making the finding that mothers had higher expressed emotion difficult to generalise. The study did not include families with children younger than 6 years, so it does not reflect early intervention contexts. The sample had limited racial and ethnic diversity and was predominantly high-income and educated, which may not represent all families. Parental fragile X premutation status was not collected, so its potential impact on caregiver emotional state could not be analysed. The Five-Minute Speech Sample may not be fully validated for intellectual disability populations, and coding criteria might need adaptation for specific genetic conditions.

Declared interests

The paper does not report any specific funding sources or conflicts of interest declarations in the provided text.

The easy way to misread this

Do not interpret the high expressed emotion rates as evidence of poor parenting or critical behaviour. The study found that most parents expressed warmth and few criticisms; the high expressed emotion was driven by emotional overinvolvement, worry, and self-sacrifice, reflecting caregiver burden rather than negative attitudes toward the child.

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