Living-loss: A narrative synthesis review of the grief process in parents of children with autism spectrum disorder

Abstract

ProblemRealizing that a child has a lifelong developmental condition like Autism Spectrum Disorder (ASD) can create feelings of sadness and grief for the parents. It remains unclear, however, how parents deal with and understand these emotions. The purpose of this narrative review was to explore the grief process of parents of children with ASD. Eligibility criteriaAn analysis of the literature was conducted using the databases Psychinfo, Scopus, Web of Science, and PubMed. As part of our research, we also searched the grey literature (Google Scholar) and the thesis database (ProQuest) manually. Among the study criteria were (1) targeting direct informants as parents of children with ASD, (2) original and empirical research published in different English-language sources, (3) outcomes pertaining to grief experiences among parents, and/or processes involved in raising children with ASD, and (4) studies with qualitative data collection methods. SampleSeven articles met the inclusion criteria and were included in this narrative analysis. ResultsOur study's deductive content analysis revealed three primary themes: (i) manifestations of ambiguous loss, (ii) dealing with disenfranchised grief, and (iii) oscillation. ConclusionsThe results showed that ASD in children can cause parents to feel ambiguity and uncertainty, experience grief, and may result in the modification of expectations, emergent affective responses, and self-blame attributions. When confronted with difficulties arising from their child's condition, parents of children with ASD may undergo significant life changes and oscillate between various coping strategies. ImplicationsThe findings are expected to provide healthcare professionals, including nurses and front-line clinicians, with valuable information about the burden of grief experienced by parents of children with ASD so they can provide and validate the necessary support for them. Moreover, rigorous qualitative and quantitative studies are also required to support the claims made.