Clin Pract Epidemiol Ment Health. 2018 Jul 31;14:143-176. doi: 10.2174/1745017901814010143. eCollection 2018.
Parental Burden and its Correlates in Families of Children with Autism Spectrum Disorder: A Multicentre Study with Two Comparison Groups.
Clinical practice and epidemiology in mental health : CP & EMH
Angelo Picardi, Antonella Gigantesco, Emanuele Tarolla, Vera Stoppioni, Renato Cerbo, Maurizio Cremonte, Guido Alessandri, Ilaria Lega, Franco Nardocci
Affiliations
Affiliations
- Centre for Behavioural Sciences and Mental Health, Italian National Institute of Health, Rome. Italy.
- Department of Mental Health, Local Health Unit, Trento, Italy.
- Department of Pediatrics and Child and Adolescent Neuropsychiatry, Marche Nord Hospital, Fano, Italy.
- Child Neuropsychiatry Unit and Centre for Neurodevelopmental Disorders, Pescara, Italy.
- Neurological and Psychiatric Child Unit, Pediatric Department, Alessandria Hospital, Alessandria, Italy.
- Department of Psychology, Sapienza University of Rome, Italy.
- Women's Health Unit, National Centre of Epidemiology Surveillance and Health Promotion, Italian National Institute of Health, Rome. Italy.
- Italian Society for Child and Adolescent Neuropsychiatry, Italy.
- Italian Autism Foundation, Rome, Italy.
PMID: 30158998
PMCID: PMC6080067 DOI: 10.2174/1745017901814010143
Abstract
BACKGROUND: 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.
OBJECTIVE: 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.
METHODS: 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.
RESULTS: 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.
CONCLUSION: 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.
Keywords: Autism Spectrum Disorders; Coping; Parental burden; Psychological distress; Resilience; Social support
References
- Soc Psychiatry Psychiatr Epidemiol. 1998 Sep;33(9):405-12 - PubMed
- Riv Psichiatr. 2012 May-Jun;47(3):231-7 - PubMed
- Res Dev Disabil. 2015 Oct-Nov;45-46:411-21 - PubMed
- Psychiatry (Edgmont). 2007 Jul;4(7):28-37 - PubMed
- J Psychosom Res. 2004 Sep;57(3):219-23 - PubMed
- Autism Res. 2012 Jun;5(3):160-79 - PubMed
- J Autism Dev Disord. 1987 Dec;17(4):565-76 - PubMed
- Autism. 2014 Jul;18(5):502-10 - PubMed
- Autism. 2014 Oct;18(7):815-26 - PubMed
- J Autism Dev Disord. 2000 Jun;30(3):205-23 - PubMed
- J Autism Dev Disord. 2010 Dec;40(12):1485-94 - PubMed
- Autism. 2002 Mar;6(1):115-30 - PubMed
- Autism. 2004 Dec;8(4):409-23 - PubMed
- J Health Psychol. 2001 Sep;6(5):569-84 - PubMed
- J Autism Dev Disord. 2012 Sep;42(9):1818-26 - PubMed
- J Autism Dev Disord. 2012 Apr;42(4):512-20 - PubMed
- Soc Psychiatry Psychiatr Epidemiol. 2000 Mar;35(3):109-15 - PubMed
- Psychosomatics. 2003 Sep-Oct;44(5):374-81 - PubMed
- Pediatrics. 2014 Mar;133(3):e520-9 - PubMed
- J Autism Dev Disord. 1980 Mar;10(1):91-103 - PubMed
- J Eur Acad Dermatol Venereol. 2001 Sep;15(5):410-7 - PubMed
- Biol Psychol. 2013 Feb;92(2):353-8 - PubMed
- J Autism Dev Disord. 2005 Oct;35(5):635-44 - PubMed
- Soc Psychiatry Psychiatr Epidemiol. 1990 Nov;25(6):289-97 - PubMed
- J Autism Dev Disord. 2008 Jul;38(6):1092-103 - PubMed
- Pediatrics. 2008 Dec;122(6):e1149-58 - PubMed
- Res Dev Disabil. 2004 May-Jun;25(3):245-64 - PubMed
- Health Psychol. 1999 Sep;18(5):495-505 - PubMed
- J Autism Dev Disord. 1992 Jun;22(2):205-16 - PubMed
- J Intellect Disabil Res. 2006 Mar;50(Pt 3):172-83 - PubMed
- J Intellect Disabil Res. 2006 Dec;50(Pt 12):874-82 - PubMed
- Muscle Nerve. 2015 Jul;52(1):13-21 - PubMed
- J Clin Psychol. 2009 Dec;65(12):1270-80 - PubMed
- J Autism Dev Disord. 2011 Jul;41(7):879-90 - PubMed
- Annu Rev Psychol. 1991;42:401-25 - PubMed
- Psychother Psychosom. 2000 Mar-Apr;69(2):95-100 - PubMed
- J Autism Dev Disord. 2011 Mar;41(3):320-31 - PubMed
- Pediatrics. 2012 Apr;129(4):617-23 - PubMed
- J Autism Dev Disord. 2006 Oct;36(7):871-9 - PubMed
- J Autism Dev Disord. 2014 Aug;44(8):1908-17 - PubMed
- J Autism Dev Disord. 2008 Jul;38(6):1147-60 - PubMed
- J Autism Dev Disord. 2015 Apr;45(4):1084-95 - PubMed
- J Autism Dev Disord. 2013 Jul;43(7):1662-75 - PubMed
- J Autism Dev Disord. 2006 Jul;36(5):685-95 - PubMed
- J Intellect Disabil Res. 2002 Oct;46(Pt 7):548-59 - PubMed
- Int J Behav Med. 1997;4(1):92-100 - PubMed
- Autism. 2009 Jul;13(4):375-87 - PubMed
- Sci China Life Sci. 2015 Oct;58(10):1036-43 - PubMed
- J Autism Dev Disord. 1991 Dec;21(4):407-16 - PubMed
- J Autism Dev Disord. 2013 Nov;43(11):2604-16 - PubMed
- J Autism Dev Disord. 2001 Jun;31(3):327-36 - PubMed
- J Health Soc Behav. 1995;Spec No:53-79 - PubMed
- J Autism Dev Disord. 2014 Nov;44(11):2820-31 - PubMed
- Issues Compr Pediatr Nurs. 2011;34(1):4-25 - PubMed
- Am J Ment Retard. 2007 Nov;112(6):401-17 - PubMed
- J Am Acad Nurse Pract. 2007 May;19(5):251-60 - PubMed
- Autism. 2007 Nov;11(6):489-501 - PubMed
- J Clin Child Adolesc Psychol. 2005 Sep;34(3):523-40 - PubMed
- Neuropsychiatr Dis Treat. 2016 Apr 05;12:745-62 - PubMed
- J Autism Dev Disord. 2008 Mar;38(3):546-52 - PubMed
- Maturitas. 2016 Mar;85:117-30 - PubMed
- J Autism Dev Disord. 2013 Jul;43(7):1547-54 - PubMed
- J Child Psychol Psychiatry. 2005 Jan;46(1):69-83 - PubMed
- J Intellect Dev Disabil. 2013 Jun;38(2):163-71 - PubMed
- Arch Gen Psychiatry. 1983 Nov;40(11):1228-31 - PubMed
- Dev Psychol. 2011 Mar;47(2):551-61 - PubMed
- J Autism Dev Disord. 2008 Aug;38(7):1278-91 - PubMed
- Epilepsy Res. 2006 May;69(2):135-46 - PubMed
- J Autism Dev Disord. 2014 Oct;44(10):2392-9 - PubMed
- Pediatrics. 2014 Aug;134(2):e454-63 - PubMed
- J Autism Dev Disord. 2014 Jul;44(7):1609-20 - PubMed
- J Nerv Ment Dis. 2018 Apr;206(4):226-230 - PubMed
- Psychol Rep. 2007 Dec;101(3 Pt 1):943-4 - PubMed
- Psychosomatics. 2005 Nov-Dec;46(6):556-64 - PubMed
- Pediatr Nurs. 2002 Nov-Dec;28(6):565-70 - PubMed
- Autism. 2017 Feb;21(2):155-166 - PubMed
- Clin Psychol Rev. 2002 Apr;22(3):383-442 - PubMed
- J Autism Dev Disord. 2013 Mar;43(3):629-42 - PubMed
- J Autism Dev Disord. 2010 Oct;40(10):1274-84 - PubMed
- J Autism Dev Disord. 2014 Aug;44(8):1933-45 - PubMed
- Psychol Sci. 2013 Oct;24(10):1918-27 - PubMed
- J Pers Assess. 1990 Winter;55(3-4):610-7 - PubMed
- J Pers Soc Psychol. 1989 Feb;56(2):267-83 - PubMed
- Psychosom Med. 2007 Jan;69(1):40-6 - PubMed
- J Intellect Disabil Res. 2001 Dec;45(Pt 6):535-43 - PubMed
- J Autism Dev Disord. 2010 Feb;40(2):167-78 - PubMed
- JAMA Pediatr. 2014 Jan;168(1):40-6 - PubMed
- Am J Ment Retard. 2007 Nov;112(6):450-61 - PubMed
- J Child Psychol Psychiatry. 2011 Jan;52(1):91-9 - PubMed
- Psychol Med. 2015 Feb;45(3):601-13 - PubMed
- J Autism Dev Disord. 2014 Dec;44(12):3185-203 - PubMed
- J Occup Med. 1989 Aug;31(8):657-63 - PubMed
- Brain Dev. 2013 Feb;35(2):133-8 - PubMed
- Soc Sci Med. 1998 Jun;46(12):1569-85 - PubMed
- J Intellect Disabil Res. 2007 Sep;51(Pt 9):702-14 - PubMed
- Soc Sci Med. 2005 Jul;61(2):313-22 - PubMed
- Compr Psychiatry. 1993 May-Jun;34(3):198-205 - PubMed
- J Autism Dev Disord. 2008 May;38(5):876-89 - PubMed
- Res Dev Disabil. 2014 Nov;35(11):3119-30 - PubMed
- J Child Psychol Psychiatry. 1989 May;30(3):459-70 - PubMed
- Int J Circumpolar Health. 2002;61 Suppl 2:36-50 - PubMed
- Res Dev Disabil. 2014 Mar;35(3):686-95 - PubMed
- J Intellect Dev Disabil. 2012 Dec;37(4):294-302 - PubMed
- J Autism Dev Disord. 2014 Aug;44(8):1793-807 - PubMed
- Iran J Nurs Midwifery Res. 2015 Jan-Feb;20(1):93-8 - PubMed
- Clin Child Fam Psychol Rev. 2012 Sep;15(3):247-77 - PubMed
- Res Dev Disabil. 2005 Mar-Apr;26(2):169-81 - PubMed
Publication Types