Beyond Silence: A Scoping Review of Provided Support for Grieving Children With Intellectual Disabilities or Autism...

Area of Science:

• Pediatrics
• Psychology
• Special Education

Background:

• Children with intellectual disabilities (ID) or autism spectrum disorder (ASD) are often presumed unable to grieve or comprehend death.
• This assumption can lead to a lack of essential grief support, increasing their risk for complicated grief.
• Understanding existing grief support is crucial for improving care for these vulnerable children.

Purpose of the Study:

• To conduct a scoping review to identify and map existing grief support strategies for children with ID or ASD.
• To analyze the nature and levels of grief support currently available to this population.

Main Methods:

• A comprehensive search of seven databases was conducted.
• 514 records were screened, and six studies meeting predefined inclusion criteria were included in the review.

Main Results:

• Six studies identified various grief support methods: discussions, participation in death rituals, family support, storytelling, and professional interventions.
• The identified support was categorized into micro, meso, and exo levels, with a notable absence of macro-level support.
• This indicates that grief support for children with ID or ASD is often irregular and inconsistent.

Conclusions:

• Current grief support for children with ID or ASD is fragmented and incomplete, particularly lacking systemic (macro-level) integration.
• There is a significant need to develop and implement more consistent, comprehensive, and accessible grief support frameworks for bereaved children with ID or ASD.
• Addressing these gaps is vital to mitigate the risk of complicated grief in this population.