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

doi:10.1016/j.ridd.2016.05.007

Research in Developmental Disabilities

Volume 55, August 2016, Pages 312-321

https://doi.org/10.1016/j.ridd.2016.05.007 Get rights and content

Highlights

•
Parents of children with ASD experience strong feelings of grief.
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Reception of the diagnosis is associated with the loss of the child that they had up to this time.
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The parents must make a major effort to come to terms with feelings of loss.
•
Emotional work with the parents is necessary to deal with these feelings.

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.

Section snippets

What this paper adds

•
Analysis of the feelings of loss and grief of parents of children diagnosed with autism spectrum disorder (ASD) based on grounded theory, an inductive approach that permits generating a theory based on the discourse and direct experience of participants.
•
According to the discursive structure of their feeling of loss, parents identified “Unexpected Child Loss” as their predominant feeling. The child they had been bringing up disappeared with the ASD diagnosis. This feeling was associated with

Design

The design of this qualitative study was based on grounded theory, defined as a systematic process of obtaining and analyzing data in order to develop a theory directly based on the reported experience of participants (Strauss & Corbin, 2002).

Participants

Purposive sampling (Flick, 2007) was used to select participants from among parents supported by the Unit of Monitoring and Early Assistance (UMEA) or ADERES (Association for promoting social relationships) in Granada or the Juan Martos Association in

Results

The core category that explained the feelings of loss identified in these parents was “Unexpected Child Loss” (see Fig. 1). This code was associated with loss-related emotions and with simultaneous processes of resolving these feelings and encountering obstacles. Results were organized in accordance with these categories and also as a function of parent gender and whether the child was a first-born child or not.

Discussion

This study explored the feelings of loss in parents of children diagnosed with ASD and analyzed key variables related to these emotions. It established the importance of unexpected child loss at the time of the diagnosis as the core category and identified a series of associated emotions and simultaneous processes of grief resolution and a confrontation with obstacles.

These findings on the emotions related to grief and loss are in agreement with previous reports (Altiere and Von Kluge, 2009,

Conclusions

In conclusion, this study presents a model for the feelings of loss in parents of children diagnosed with ASD based on their subjective experiences. There is a need for healthcare professionals to understand and take account of these feelings as part of a grieving process that may require specific emotional interventions.

Conflict of interest

All authors declare that they have no conflict of interest.

Funding

Acknowledgments

This research was supported by the Health Research Project titled “Neuropsychological markers on children with learning disabilities” [Estudio de indicadores neuropsicológicos en niños con problemas del aprendizaje] (Ref: PI-10/02735). MFA is funded by a FPU predoctoral research grant (AP 2012-1744) from Spanish Ministry of Education and Science.The authors are grateful to all parents who participated on the research, to the ADERES and Juan Martos associations for their collaboration, to Ana Mª

References (39)

M. Fernández-Alcántara et al.
Feelings of loss in parents of children with infantile cerebral palsy
Disability and Health Journal
(2015)
D. Gatzoyia et al.
The association of illness perceptions with depressive symptoms and general psychological distress in parents of an offspring with autism spectrum disorder
Disability and Health Journal
(2014)
G. Giovagnoli et al.
Behavioral and emotional profile and parental stress in preschool children with autism spectrum disorder
Research in Developmental Disabilities
(2015)
H. Lutz et al.
Coping with autism: a journey toward adaptation
Journal of Pediatric Nursing
(2012)
American Psychiatric Association
Diagnostic and statistical manual of mental disorders: DSM-V
(2013)
L. Alison Mcinnes
Una revisión de la genética del autismo
Revista de la Asociación Española de Neuropsiquiatría
(2002)
M.J. Altiere et al.
Search ing for acceptance: challenges encountered while raising a child with autism
Journal of Intellectual & Developmental Disability
(2009)
S. Baron-Cohen
Autismo y síndrome de Asperger
(2010)
P. Boss
Ambiguous loss
(1999)
P. Boss
Ambiguous loss research, theory, and practice: reflections after 9/11
Journal of Marriage and Family
(2004)

E.K. Cridland et al.

Family-focused autism spectrum disorder research: a review of the utility of family systems approaches

Autism

(2014)

S. Elo et al.

Qualitative content analysis: a focus on trustworthiness

SAGE Open

(2014)

L. Fasse et al.

The Dual Process Model of Coping with Bereavement in the test of the subjective experiences of bereaved spouses. An interpretative phenomenological analysis

OMEGA – Journal of Death

(2015)

M. Fernández-Alcántara et al.

Experiencias y obstáculos de los psicólogos en el acompañamiento de los procesos de fin de vida

Anales de Psicologia

(2013)

U. Flick

Introducción a la investigación cualitativa

(2007)

A. George et al.

Chronic grief: experiences of working parents of children with chronic illness

Contemporary Nurse

(2006)

B. Gorlat-Sánchez et al.

Effectiveness of a plan to support caregivers at two public hospitals in Granada (Spain)

Aquichán

(2014)

V.A. Hernández-Martínez et al.

Aspectos psicológicos de familiares de personas diagnosticadas con Trastorno del Espectro Autista (TEA)

Revista Intercontinental de Psicología y Educación

(2012)

A. Hervás et al.

Los Trastornos Del Espectro Autista?

Pediatría Integral

(2012)

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View full text

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

Highlights

Abstract

Background

Aims

Method

Procedure

Results

Implications

Section snippets

What this paper adds

Design

Participants

Results

Discussion

Conclusions

Conflict of interest

Funding

Acknowledgments

Disability and Health Journal

Disability and Health Journal

Research in Developmental Disabilities

Journal of Pediatric Nursing

Diagnostic and statistical manual of mental disorders: DSM-V

Una revisión de la genética del autismo

Revista de la Asociación Española de Neuropsiquiatría

Search ing for acceptance: challenges encountered while raising a child with autism

Journal of Intellectual & Developmental Disability

Autismo y síndrome de Asperger

Ambiguous loss

Ambiguous loss research, theory, and practice: reflections after 9/11

Journal of Marriage and Family

Family-focused autism spectrum disorder research: a review of the utility of family systems approaches

Autism

Qualitative content analysis: a focus on trustworthiness

SAGE Open

The Dual Process Model of Coping with Bereavement in the test of the subjective experiences of bereaved spouses. An interpretative phenomenological analysis

OMEGA – Journal of Death

Experiencias y obstáculos de los psicólogos en el acompañamiento de los procesos de fin de vida

Anales de Psicologia

Introducción a la investigación cualitativa

Chronic grief: experiences of working parents of children with chronic illness

Contemporary Nurse

Effectiveness of a plan to support caregivers at two public hospitals in Granada (Spain)

Aquichán

Aspectos psicológicos de familiares de personas diagnosticadas con Trastorno del Espectro Autista (TEA)

Revista Intercontinental de Psicología y Educación

Los Trastornos Del Espectro Autista?

Pediatría Integral