1 Centre for Behavioural Sciences and Mental Health, Italian National Institute of Health, Rome. Italy
2 Department of Mental Health, Local Health Unit, Trento, Italy
3 Department of Pediatrics and Child and Adolescent Neuropsychiatry, Marche Nord Hospital, Fano, Italy
4 Child Neuropsychiatry Unit and Centre for Neurodevelopmental Disorders, Pescara, Italy
5 Neurological and Psychiatric Child Unit, Pediatric Department, Alessandria Hospital, Alessandria, Italy
6 Department of Psychology, Sapienza University of Rome, Italy
7 Women’s Health Unit, National Centre of Epidemiology Surveillance and Health Promotion, Italian National Institute of Health, Rome. Italy
8 Italian Society for Child and Adolescent Neuropsychiatry, Italy
9 Italian Autism Foundation, Rome, Italy
The effects of having a child with Autism Spectrum Disorder (ASD) on parents are multifaceted and pervasive. While ample evidence has been provided that these families are under severe stress, there are still several knowledge gaps and unresolved questions.
This study aimed at quantifying the subjective and objective burden of ASD in mothers and fathers, and at improving the understanding of the interplay between parental burden, child’s characteristics, and parents’ coping resources and strategies.
The parents of 359 children/adolescents with ASD were compared to parents of age-matched patients with Down syndrome (N=145) and Type 1 diabetes mellitus (N=155). Child’s clinical characteristics and parents’ caregiving burden, psychological distress, coping resources and strategies were assessed.
The parents of children with ASD reported higher objective and subjective burden, more frequent psychological distress, lower social support. Mothers reported greater subjective burden than fathers. Structural equation modeling showed that the most consistent positive and negative predictors of objective and subjective burden were ASD symptom severity and social support, respectively. Other positive predictors were engagement, distraction and disengagement coping, intellectual disability, and adaptive functioning. Other negative predictors were spiritual wellbeing and hardiness. Some effects were indirect through social support and coping strategies.
This study confirmed that parents of children with ASD carry a huge caregiving burden, and added to our understanding of the factors associated with burden. The findings may help inform the design of effective interventions aimed at reducing burden among the parents of children with ASD.
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* Address correspondence to this author at the Centre for Behavioural Sciences and Mental Health, Italian National Institute of Health, Viale Regina Elena, 299 - 00161 Rome, Italy; Tel: +39 06 49904200; Fax: +39 06 49904182; E-mail: firstname.lastname@example.org