Burden of care perceived by the principal caregivers of autistic children and adolescents visiting health facilities in Lucknow City

Jain, Aparna; Ahmed, Naim; Mahour, Pooja; Agarwal, Vivek; Kanta, Chandra; Shrivatav, Nitesh Kumar

doi:10.4103/ijph.ijph_366_18

Cited by 16 publications

(8 citation statements)

References 6 publications

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“…The ASD group specifically highlighted social/parental isolation, feelings of depression, concern for the future, disbelief about the diagnosis, lack of support/acceptance in the family, as well as big life changes (e.g., mother leaving job). These results from the ASD group confirm previous findings (e.g., [42]), and specifically, a meta-synthesis of studies investigating parental experience of autism around the world identified a common theme of feeling socially excluded and negatively judged by others, even within their own extended family [43]. Financial difficulties and concerns for the child's future have also been highlighted as two of the six main factors associated with parenting stress for parents of children with ASD in South East Asia in a systematic review [2].…”

Section: Discussionsupporting

confidence: 92%

Caregiver Perceptions of Autism and Neurodevelopmental Disabilities in New Delhi, India

Estrin

Bhavnani

Arora

et al. 2023

IJERPH

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Evidence suggests that parenting an autistic child or a child with neurodevelopmental disabilities can be more challenging than parenting a child meeting their developmental milestones, especially when there is a dearth of support services, such as in low- and middle-income countries (LMICs). Despite the majority of the world’s children residing in LMICs, there are limited studies examining the understanding of developmental disorders and autism in these regions. We therefore aim to investigate perceptions of autism and developmental disabilities in caregivers of children in an urban setting in New Delhi, India. Thirteen semi-structured interviews with parents/caregivers of children were conducted in three groups: (1) caregivers with a child with a diagnosis of autism spectrum disorder (ASD); (2) caregivers with a child with a diagnosis of intellectual disability (ID); (3) and caregivers with children meeting their developmental milestones. Transcripts were analysed using framework analysis. Three themes on the impact of cultural and contextual factors on the recognition, interpretation, and reporting of autistic symptoms are discussed, and additional themes focus on the impact of diagnosis and family support. Our findings highlighted a vital need for greater community awareness and recognition of autism in India, for example through community and healthcare training, which may help to reduce stigma and facilitate wider family support.

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Section: Discussionsupporting

confidence: 92%

Caregiver Perceptions of Autism and Neurodevelopmental Disabilities in New Delhi, India

Estrin

Bhavnani

Arora

et al. 2023

IJERPH

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“…The pandemic and associated lockdown came with school closures and a switch to online modes of learning ( 31 – 34 ). Our findings showed that the learning loss which children experienced due to school closure was acutely felt in children with autism.…”

Section: Discussionmentioning

confidence: 99%

Locked down-locked in: experiences of families of young children with autism spectrum disorders in Delhi, India

Kaur,

Lall,

Abhilashi

et al. 2024

Front. Public Health

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IntroductionThe onset of the COVID-19 pandemic and subsequent lockdowns in March 2020 disrupted the lives of families across India. The lockdown related restrictions brought forth a multitude of challenges including loss of employment, social isolation, school closures and financial burdens. Specifically, it also resulted in the restriction of health-care services for children with neurodevelopmental disabilities.MethodsThis qualitative study was conducted as a part of a larger trial in India to understand the experiences of families of young children with autism during the pandemic. In-depth interviews were carried out with 14 caregivers residing in New Delhi, India.ResultsOur findings identified pandemic and lockdown’s universal impacts on family life and financial stability stemming from job loss, business closure, and salary deductions, affecting quality of life of families. Furthermore, COVID-19 pandemic’s impact on autistic children was evident through limited access to essential services and financial challenges related service interruptions even after resumption of services. The lockdown’s novelty also affected children’s behavior, with both challenging behavioral changes and positive impacts. Primary caregivers, predominantly mothers, assumed additional responsibilities in household tasks, schooling, and therapy administration. While some these experiences were universally experienced, a few of these improved outcomes for autistic children. Despite challenges, parents expressed gratitude for their family’s safety and well-being during the difficult time.DiscussionsThese findings inform service provision for vulnerable families and offer implications for designing interventions such as credit schemes for families, guidance and resources for establishing and maintaining routines of children with autism, adopting flexible and adaptable approaches to service delivery, and special provisions for children with autism to be able to maintain their routines outside of home. Furthermore, the study highlights the need for comprehensive support, including educational resources and stress management counselling to empower parents in supporting essential care and routines for their children during such unprecedented times.

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“…Using IPA, the findings of this study revealed that black African mothers in South Africa had considerable psychological, financial, and societal burdens as a result of caring for a child with ASD. Previous research has indicated that raising a child with autism is associated with a high care load [32,33].…”

Section: Discussionmentioning

confidence: 99%

‘I asked myself why I was having this difficult child’: Care Burden Experiences of Black African Mothers Raising A Child with Autistic Spectrum Disorder

Lentoor,

Mdluli,

Maepa

2023

TOPHJ

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Introduction: There is increasing recognition that raising a child with Autism Spectrum Disorder (ASD) is stressful and challenging, particularly for mothers in resource-constrained countries. The aim of this study was to learn more about the experiences of black African mothers raising children with ASD and to gain a better understanding of the care burden. Methods: Semi-structured interviews were conducted with nine purposively recruited mothers of children with ASD and analysed using interpretative phenomenological analysis. Results: The findings revealed that caring for children with ASD puts a tremendous psychological, emotional, and financial strain on mothers. Mothers commonly faced social judgment and stigma, which manifested as internalized self-blame, isolation, and social exclusion for both themselves and their children. Conclusion: The findings highlight the critical need to increase psychosocial support for mothers of children with ASD who live in resource-constrained countries.

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Burden of care perceived by the principal caregivers of autistic children and adolescents visiting health facilities in Lucknow City

Cited by 16 publications

References 6 publications

Caregiver Perceptions of Autism and Neurodevelopmental Disabilities in New Delhi, India

Caregiver Perceptions of Autism and Neurodevelopmental Disabilities in New Delhi, India

Locked down-locked in: experiences of families of young children with autism spectrum disorders in Delhi, India

‘I asked myself why I was having this difficult child’: Care Burden Experiences of Black African Mothers Raising A Child with Autistic Spectrum Disorder

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