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

doi:10.1016/j.eclinm.2023.102211

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

EClinicalMedicine. 2023 Sep 20:64:102211. doi: 10.1016/j.eclinm.2023.102211. eCollection 2023 Oct.

Authors

Eva B Warreman¹, Susan E Lloyd², Laura A Nooteboom¹, Pieter J M Leenen³, Mary Beth Terry², Hans W Hoek^{2

4

5}, Elisabeth F C van Rossum⁶, Robert R J M Vermeiren^{1

5}, Wietske A Ester^{1

5

7}

Affiliations

¹ Department of Child and Adolescent Psychiatry, LUMC Curium, Leiden University Medical Centre, Endegeesterstraatweg 27, Oegstgeest 2342 AK, the Netherlands.
² Department of Epidemiology, Mailman School of Public Health, Columbia University, 722 West 168th St., New York, United States.
³ Department of Immunology, Erasmus University Medical Centre, PO Box 2040, Rotterdam 3000 CA, the Netherlands.
⁴ Department of Psychiatry, University Medical Centre Groningen, Hanzeplein 1, Groningen 9713 GZ, the Netherlands.
⁵ Parnassia Psychiatric Institute, Youz, Kiwistraat 43, The Hague 2552 DH, the Netherlands.
⁶ Department of Internal Medicine, Erasmus University Medical Centre, PO Box 2040, Rotterdam 3000 CA, the Netherlands.
⁷ Sarr Autism Rotterdam, Youz Child and Adolescent Psychiatry, Dynamostraat 18, Rotterdam 3083 AK, the Netherlands.

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.

Funding: Lifelines has been funded by the Dutch government.

Keywords: Autism; Caregiving; Health; Strain.