Systematic Review of the Relationship Between Autism Stigma and Informal Caregiver Mental Health

J Autism Dev Disord. 2019 Apr;49(4):1665-1685. doi: 10.1007/s10803-018-3835-z.

Abstract

Families play a crucial role in determining the mental health of the autistic individual(s) they are caring for. However, the stigma associated with autism can impair caregiver health. To investigate this, empirical evidence pertaining to stigma's impact on informal caregivers' mental health was systematically reviewed. All twelve included studies (n = 1442 informal caregivers) consistently reported the impact of autism related stigma upon caregiver mental health to be significant, meaningful and complex. A new theoretical framework describing the relationship between stigma and caregiver mental health is constructed. Moderating variables include those both changeable through intervention (e.g. hopelessness, self-esteem, self-compassion) and not changeable (gender, culture, financial burden and time since diagnosis). Implications and recommendations for professionals, interventions and future research are proposed.

Keywords: Autism; Caregiver; Carer; Mental health; Stigma; Theoretical framework.

Publication types

  • Systematic Review

MeSH terms

  • Asia, Eastern / ethnology
  • Autistic Disorder / ethnology
  • Autistic Disorder / psychology*
  • Autistic Disorder / therapy*
  • Caregivers / psychology*
  • Empathy / physiology
  • Humans
  • Mental Health* / ethnology
  • Mental Health* / trends
  • Middle East / ethnology
  • Social Stigma*
  • United States / ethnology

Grants and funding