Exploration of caregiver experience for children with ASD: an in-depth perspective

Gupta, Neha; Khanna, Manya; Garg, Rashi; Sethi, Vedantika; Khattar, Shivangi; Tekkar, Purva; Maria, Shwetha; Gupta, Muskan; Saxena, Akash; Gupta, Parul; Ann Schuchert, Sara

doi:10.1108/aia-09-2022-0044

Cited by 3 publications

(1 citation statement)

References 54 publications

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“…On the other hand, when spouses struggle to maintain the marital alliance, when they exhibit differing attitudes, and when there is an uneven distribution of responsibilities between them, the lack of a shared sense of partnership can potentially damage the quality of the relationship between parents of ASD children. This supports previous studies on parents of children with ASD that reported the communication between the couple to be a key factor in maintaining a marriage (Gupta et al 2023). Likewise, dyadic coping of parents of children with disabilities, which includes facing the challenges as a team, can have an important role in preserving the marital relationship (Brien-Bérard and des Rivières-Pigeon 2023).…”

Section: Discussionsupporting

confidence: 87%

Exploring Marital Quality in Parents of Children with Autism: Identifying Barriers and Facilitators

Gur,

Golan Bayazy

2024

Social Sciences

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The current study aims to examine the factors that facilitate or act as barriers to the marital relationships of parents of children with ASD. In total, 150 parents of children with ASD participated in this study. An online qualitative survey tool was utilized to collect data, which were subsequently subjected to thematic analysis. Through qualitative analysis, three major themes emerged: (1) Psychological and Emotional Experiences, (2) Sense of Partnership, and (3) The Rich get Richer, including sub-themes such as formal support systems, a strong marital relationship prior to ASD diagnosis, and limited family resources. The findings suggest that elements of the marital relationship can serve as valuable resources for parents of children with ASD in coping with the challenges of parenthood. Conversely, the study highlights certain factors that act as barriers to the marital relationship.

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Section: Discussionsupporting

confidence: 87%

Exploring Marital Quality in Parents of Children with Autism: Identifying Barriers and Facilitators

Gur,

Golan Bayazy

2024

Social Sciences

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Caregiving for Individuals with Autism Spectrum Disorder: A Narrative Review of Qualitative Literature from Indian Context

Tejo Prasanna,

John

2024

J. Psychosoc. Rehabil. Ment. Health

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Caregivers of Children with Autism Spectrum Disorders: The Role of Guilt Sensitivity and Support

Rizzo,

Sorrenti,

Commendatore

et al. 2024

JCM

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Background/Objectives: Burden Syndrome, also known as Caregiver Syndrome, particularly affects those who serve in the role of informal caregiver in the presence of family members with conditions. The ABCX dual model examines the impact on the caregiver of the diagnosis of autism spectrum disorder (ASD) on the family. This model considers the severity of the stressor (A), the additional demands of life stress (aA), the family’s internal resources (B), the family’s external resources (bB), the family’s assessment of the situation (C), coping strategies (cC), and outcome (X). The purpose of the present study is to investigate the relationships between resilience, guilt, and burden of care in caregivers of children with ASD. Methods: Various assessment instruments were used, including the “Caregiver Burden Inventory” to measure burden, the “Brief Resilience Scale” to assess resilience, the “Guilt Sensitivity Questionnaire” to examine guilt sensitivity, and the “DA.L.I.A.” to collect information on parent and child characteristics. A total of 80 parents/caregivers participated in the research, including 53 women (Age M = 41.72; SD = 7.8) and 27 men (Age M = 43.35; SD = 6.29). Results: The findings indicate that individuals’ resilience to stressful events correlates negatively with burden, a developmental subtype. However, guilt seems not to play a significant role in the overall perception of burden. In contrast, it was found that the use of informal supports is associated with higher levels of guilt and emotional burden, whereas the use of formal supports is correlated with higher emotional burden, but not higher perceptions of guilt. Conclusions: This study provides important information about the support needed by caregivers and suggests how to address emotional burdens to prevent burnout and support families with children with ASD.

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Exploration of caregiver experience for children with ASD: an in-depth perspective

Cited by 3 publications

References 54 publications

Exploring Marital Quality in Parents of Children with Autism: Identifying Barriers and Facilitators

Exploring Marital Quality in Parents of Children with Autism: Identifying Barriers and Facilitators

Caregiving for Individuals with Autism Spectrum Disorder: A Narrative Review of Qualitative Literature from Indian Context

Caregivers of Children with Autism Spectrum Disorders: The Role of Guilt Sensitivity and Support

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