Psychological, behavioural, and physical aspects of caregiver strain in autism-caregivers: a cohort study

Eva B. Warreman*, Susan E. Lloyd, Laura A. Nooteboom, Pieter J.M. Leenen, Mary Beth Terry, Hans W. Hoek, Elisabeth F.C. van Rossum, Robert R.J.M. Vermeiren, Wietske A. Ester

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review

1 Citation (Scopus)
15 Downloads (Pure)

Abstract

Background:

People who give care to autistic individuals (autism-caregivers) experience higher levels of caregiver strain than people who provide care for individuals with other chronic conditions (non-autism-caregivers). This places them at higher risk for psychological, behavioural and physical health concerns. The aim of this study is to delineate psychological, behavioural, and physical aspects of caregiver strain in autism-caregivers compared to non-autism-caregivers. 

Methods: 

We included 3354 adult caregivers from the general population in the Netherlands participating in the second assessment (January, 1, 2014–December, 31, 2017) of the Lifelines Cohort. In this cohort study, using multivariable regression adjusted for age, sex, and socioeconomic status, we analysed psychological (anxiety and depression based on a Mini International Neuropsychiatric Interview, and self-reported stress and perceived health), behavioural (questionnaire-assessed physical activity, alcohol use, and smoking), and physical aspects (body mass index, waist circumference, and leukocyte-counts) of caregiver strain in autism-caregivers (n = 722) compared with non-autism-caregivers (n = 2632). 

Findings:

Autism-caregivers reported more stress (OR 3.61, 95% CI 2.60–4.99). Both anxiety (OR 1.85, 95% CI 1.37–2.49) and depressive disorders (OR 1.83, 95% CI 1.17–2.86) were more common in autism-caregivers than in non-autism-caregivers. Perceived health, physical activity, alcohol use, and smoking were not different between autism- and non-autism-caregivers. In autism-caregivers, lymphocyte- and monocyte-counts were lower than in non-autism-caregivers. 

Interpretation: 

In this large cohort, autism-caregivers had worse psychological health than non-autism-caregivers. Moreover, autism-caregiving might be associated with an altered immune balance. These findings underline the higher caregiver strain in autism-caregivers compared to other caregivers. This calls for increased support to autism-caregivers.

 

Original languageEnglish
Article number102211
JournalEClinicalMedicine
Volume64
DOIs
Publication statusPublished - Oct 2023

Bibliographical note

Publisher Copyright: © 2023 The Author(s)

Fingerprint

Dive into the research topics of 'Psychological, behavioural, and physical aspects of caregiver strain in autism-caregivers: a cohort study'. Together they form a unique fingerprint.

Cite this