Evidence map›Paper›PMID 36647196›Full record

ArticleJournal 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, Korrie Allen, Claire Michalak, Rebecca Shields, Elizabeth Berry-Kravis, David Hessl

Open access · greenAbstract read
In one paragraph

Article in Journal of applied research in intellectual disabilities : JARID, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.

0numbers the graph read from it
0cells of the map it votes in
2citing papers in PubMed
0.6field-weighted citation impact, top 33% of its field
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

2 citing papers in PubMed, 2 citations in OpenAlex.

  1. Article
  2. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

8 authors at 5 institutions in 1 country.

Jeanine ColemanRegis University, Denver, Colorado, USA.ORCID https://orcid.org/0000-0001-9791-1473
Talia ThompsonDepartment of Pediatrics, Children's Hospital Colorado, School of Medicine, University of Colorado, Aurora, Colorado, USA.ORCID https://orcid.org/0000-0001-6512-9743
Karen RileyRegis University, Denver, Colorado, USA.
Korrie AllenMorgridge College of Education, University of Denver, Denver, Colorado, USA.
Claire MichalakRush University, Chicago, Illinois, USA.
Rebecca ShieldsDavis Medical Center, Translational Psychophysiology and Assessment Laboratory, MIND Institute, University of California, Sacramento, California, USA.
Elizabeth Berry-KravisRush University, Chicago, Illinois, USA.
David HesslDavis Medical Center, Translational Psychophysiology and Assessment Laboratory, MIND Institute, University of California, Sacramento, California, USA.
Regis University · USRush University · USUniversity of California Davis Medical Center · USChildren's Hospital Colorado · USUniversity of Denver · US

Funding

A Cognitive Test Battery for Intellectual DisabilitiesR01HD076189 · NICHD · UNIVERSITY OF CALIFORNIA AT DAVIS · PI DAVID R HESSL · 2014 to 2026
$8.6M
POPULATION-BASED BIRTH DEFECTS SURVEILLANCE AND UTILAZATION OF SURVEILLANCE DATA U50DD000596 · DD · COLORADO STATE DEPT/PUB HLTH & ENVIRONMT · PI RUTTENBER, MARGARET · 2010 to 2015
$1.1M
NCBDD CDC HHS U50 DD000596NICHD NIH HHS R01 HD076189NICHD NIH HHS RO1HD076189
6 · The paper itself

Abstract

backgroundParenting children and young adults with intellectual disabilities, including individuals with fragile X syndrome and Down syndrome, is challenging, joyful, and complicated. Exploring how parents talk about their children, and the quality of the parent/child relationship can provide insight into the home environment and interactional patterns of the family.

methodExpressed emotion (EE) is a measurement of a family's emotional climate based on a parent or caregiver's report of warmth, emotional overinvolvement, hostility, and criticism. The purpose of this study was to describe EE for a sample of parents of individuals with intellectual disabilities and to determine any differences in EE amongst individuals within subgroups. Based on previous research about fragile X syndrome and family systems, we hypothesized that there would be significant differences between the disability groups (higher EE in families with children/young adults with fragile X syndrome).

resultsResults showed relatively high proportions of EE across groups of individuals with intellectual disabilities, however, there were no significant differences between the subgroups. Null findings suggest that differences in EE may not relate directly to a child's specific genetic condition. Rather, increased EE in caregiver populations may simply reflect well-documented stressors related to stigma, caregiver burden, and limited community supports. Critical statements were infrequent, however, over half of the participants reported dissatisfaction with their situation, and many were categorized as having emotional overinvolvement, as measured by frequent statements of intense worry and self-sacrifice.

conclusionFindings point to potential utility in family-level interventions focused on providing structured caregiver therapy to manage excessive worry and grief related to a diagnosis of intellectual disability, and respite care to encourage caregiver independence and pursuit of personal care.

Indexed as

Fragile X SyndromeIntellectual DisabilityChildExpressed EmotionHumansParent-Child RelationsParents5 min speech sampleexpressed emotionfragile X syndromeintellectual disability

Identifiers

PMID36647196
PMCPMC10381095
OpenAlexW4316669405

What OpenQuestion holds

Textmetadata
LicenceTDM
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.