Feelings of loss and grief in parents of children diagnosed with autism spectrum disorder (ASD)

Abstract

Background: Various authors have reported feelings of loss and grief in parents of children with autism spectrum disorder. However, no previous studies have investigated the structure of these feelings.

Aims: To analyze in depth the feelings of loss in parents of children diagnosed with autism spectrum disorder.

Method: A qualitative study was conducted based on grounded theory. Twenty parents participated through purposive sampling.

Procedure: Semi-structured interviews were conducted, asking about different emotional aspects of the upbringing of a child with autism spectrum disorder. Atlas.ti 6.2 program was used for open, axial, and selective coding.

Results: The core category that explained the feelings of these parents was unexpected child loss, associated with shock, negation, fear, guilt, anger, and/or sadness. Two processes were identified, one associated with the resolution of grief and the other with obstacles to overcoming it.

Implications: Feelings of loss play an important role in explaining the complex emotions experienced by these parents. Different intervention strategies are proposed.

Keywords: ASD; Autism; Disability; Grief; Parents; Qualitative.