Burden of care and quality of life in caregivers of children and adolescents with autism spectrum disorder

Patel, Amar Deep; Arya, Amit; Agarwal, Vivek; Gupta, Pawan Kumar; Agarwal, Monika

doi:10.1016/j.ajp.2022.103030

Cited by 23 publications

(25 citation statements)

References 35 publications

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“…Their mental health as a caregiver was further impacted by the experiences in the social environment which involved stigma and discrimination (Papadopoulos, 2021). In the Indian context, research indicates that the unique experience of caregiving for a child with ASD is similar, resulting in emotional and psychological challenges for the mother (Patel et al , 2022).…”

Section: Experiences Of Caregivers Globally and In Indiamentioning

confidence: 99%

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

Gupta,

Khanna,

Garg

et al. 2023

AIA

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Purpose This study aims to examine the psycho-emotional and social experiences of caregivers of children with autism spectrum disorder. Various facets of the caregiving experience are explored, including the feelings and thoughts of the parents/caregivers, such as the resilience experienced in their journey, how they coped with the challenges and also their positive experiences. Design/methodology/approach In this study, these aspects of the caregiving experience are broadly probed using semi-structured interviews subjected to narrative analysis. Lastly, there is a focus on the role of therapist-led intervention, specifically, the Eye to I© intervention model and its contributions to the parent/caregiver experience. Findings Findings from this study indicate that parents benefit from interventions that bridge gaps in skills and interpersonal communication which parents/caregivers feel they encounter in their day-to-day activities. Additionally, support groups for parents and caregivers could further address these issues. Originality/value This exploration reveals insights about the roles of societal structures and the caregiving journey.

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Section: Experiences Of Caregivers Globally and In Indiamentioning

confidence: 99%

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

Gupta,

Khanna,

Garg

et al. 2023

AIA

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“…Research shows that parents of children with Autism Spectrum Disorder (ASD) are more likely to experience higher levels of stress as opposed to parents of children with other disabilities (Patel et al, 2022). A person can have autism spectrum disorder (ASD) regardless of race, education level, position or socioeconomic status.…”

Section: Introductionmentioning

confidence: 99%

The Impact of Pressure Upon Parents in Raising Children Diagnosed with Autism Spectrum Disorders

Seeridaram¹,

Rashid²

2023

IJARBSS

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In 2017, the World Health Organisation (WHO) revealed that 1 in 160 children worldwide is diagnosed with Autism Spectrum Disorder (ASD), which continues to grow worldwide. This statistic proves that many parents worldwide continue to battle the challenge of raising and educating this select group of children. This paper is a comprehensive study, gleaning information from various pieces of writing and research focused on the pressure influencing parents of children diagnosed with Autism Spectrum Disorders (ASD) in terms of caregiving whilst finding a practical alternative in caring for children with special needs. This research has revealed that behavioral difficulties, financial constraints, and societal acceptance largely contribute to the pressure parents of children diagnosed with Autism Spectrum Disorders (ASD) experience. The result of this research shows that parents of children with ASD face a plethora of difficulties and require support from various entities in order to navigate them successfully. To lessen the caregiver's burden, spouses, typically developing children, the community, and the government must provide unwavering support and understanding. Hence, this research aims to provide insight into the struggles faced by parents of children with ASD or even serve as a guideline to develop support or intervention programs for children with ASD and their parents.

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“…ASD is a prevalent neurodevelopmental disorder with core deficits identified in social communication or interaction and restrictive, repetitive patterns of behaviour 1 . The increasing prevalence of ASD has been the subject of interest in the medical literature and lay press 2 . ASD can be diagnosed as early as 14–16 months.…”

Section: Introductionmentioning

confidence: 99%

Perceived caregiver’s burden among children with autism spectrum disorder in central Nepal: a cross-sectional study

Shrestha¹,

Shrestha²,

Khand

et al. 2023

Annals of Medicine &Amp; Surgery

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Introduction: Autism spectrum disorder (ASD) is the most common childhood neurodevelopmental disorder characterized by an atypical social and communicative functioning and restricted, repetitive patterns of behaviour activities. Caring for children with ASD is challenging for both parents and their caregivers. This study aims to explore the psychosocial burden of the caregivers of children with ASD. Materials and methodology: An analytical cross-sectional study was performed in Centre for Autism in Kathmandu, Nepal. The enrolment occurred between January 2022 and July 2022 among the caregivers of children with ASD. One hundred twenty caregivers in contact with the centre was evaluated using the Zarit Burden Interview-22 during the study period meeting inclusion criteria. Results: Our study showed that majority of caregivers among child with ASD were mothers 65 (54.16%, n=65) followed by grandparents 35 (29.16%, n=35) and father 13 (10.8%), respectively. Among them, most of the caregivers perceived moderate to severe burden 57 (47.5%) followed by mild to moderate burden 45 (37.5%) and only 7 (5.8%) of the caregivers perceived severe burden during the study which was found to be statistically significant. Conclusions: This study highlighted the fact that although most of the caregivers perceived moderate to severe burden while caring a child with ASD. The degree of burden significantly correlated with the level of ASD in the child.

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Burden of care and quality of life in caregivers of children and adolescents with autism spectrum disorder

Cited by 23 publications

References 35 publications

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

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

The Impact of Pressure Upon Parents in Raising Children Diagnosed with Autism Spectrum Disorders

Perceived caregiver’s burden among children with autism spectrum disorder in central Nepal: a cross-sectional study

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