The Comparison of Expressed Emotion of Parents of Individuals with Fragile X Syndrome to Other Intellectual Disabilities

Autor/inn/en	Coleman, Jeanine; Thompson, Talia; Riley, Karen; Allen, Korrie; Michalak, Claire; Shields, Rebecca; Berry-Kravis, Elizabeth; Hessl, David
Titel	The Comparison of Expressed Emotion of Parents of Individuals with Fragile X Syndrome to Other Intellectual Disabilities
Quelle	In: Journal of Applied Research in Intellectual Disabilities, 36 (2023) 2, S.394-404 (11 Seiten)Infoseite zur Zeitschrift PDF als Volltext Verfügbarkeit
Zusatzinformation	ORCID (Coleman, Jeanine) ORCID (Thompson, Talia)
Sprache	englisch
Dokumenttyp	gedruckt; online; Zeitschriftenaufsatz
ISSN	1360-2322
DOI	10.1111/jar.13069
Schlagwörter	Genetic Disorders; Intellectual Disability; Congenital Impairments; Parents; Self Expression; Affective Behavior; Emotional Response; Emotional Experience; Individual Differences; Stress Variables; Counseling Services; Respite Care; Family Environment; Children; Young Adults + Suchen Sie Ihr Suchwort? Intellect; Disability; Disabilities; Verstand; Behinderung; Eltern; Ausdruck; Affective disturbance; Active behaviour; Affektive Störung; Emotionales Verhalten; Individueller Unterschied; Familienmilieu; Child; Kind; Kinder; Young adult; Junger Erwachsener
Abstract	Background: Parenting 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. Method: Expressed 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). Results: Results 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. Conclusion: Findings 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. (As Provided).
Anmerkungen	Wiley. Available from: John Wiley & Sons, Inc. 111 River Street, Hoboken, NJ 07030. Tel: 800-835-6770; e-mail: cs-journals@wiley.com; Web site: https://www.wiley.com/en-us
Erfasst von	ERIC (Education Resources Information Center), Washington, DC
Update	2024/1/01