4.4 Article

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

Journal

RESEARCH IN DEVELOPMENTAL DISABILITIES
Volume 55, Issue -, Pages 312-321

Publisher

PERGAMON-ELSEVIER SCIENCE LTD
DOI: 10.1016/j.ridd.2016.05.007

Keywords

Grief; Autism; ASD; Parents; Qualitative; Disability

Funding

  1. Health Research Project titled Neuropsychological markers on children with learning disabilities [Estudio de indicadores neuropsicologicos en ninos con problemas del aprendizaje] [PI-10/02735]
  2. Spanish Ministry of Education and Science [AP 2012-1744]

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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. (c) 2016 Elsevier Ltd. All rights reserved.

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