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

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Abstract

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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Most cited references 62

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Prevalence of Autism Spectrum Disorder Among Children Aged 8 Years — Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2016

Matthew J Maenner, Kelly Shaw, Jon Baio … (2020)

Problem/Condition Autism spectrum disorder (ASD). Period Covered 2016. Description of System The Autism and Developmental Disabilities Monitoring (ADDM) Network is an active surveillance program that provides estimates of the prevalence of ASD among children aged 8 years whose parents or guardians live in 11 ADDM Network sites in the United States (Arizona, Arkansas, Colorado, Georgia, Maryland, Minnesota, Missouri, New Jersey, North Carolina, Tennessee, and Wisconsin). Surveillance is conducted in two phases. The first phase involves review and abstraction of comprehensive evaluations that were completed by medical and educational service providers in the community. In the second phase, experienced clinicians who systematically review all abstracted information determine ASD case status. The case definition is based on ASD criteria described in the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition. Results For 2016, across all 11 sites, ASD prevalence was 18.5 per 1,000 (one in 54) children aged 8 years, and ASD was 4.3 times as prevalent among boys as among girls. ASD prevalence varied by site, ranging from 13.1 (Colorado) to 31.4 (New Jersey). Prevalence estimates were approximately identical for non-Hispanic white (white), non-Hispanic black (black), and Asian/Pacific Islander children (18.5, 18.3, and 17.9, respectively) but lower for Hispanic children (15.4). Among children with ASD for whom data on intellectual or cognitive functioning were available, 33% were classified as having intellectual disability (intelligence quotient [IQ] ≤70); this percentage was higher among girls than boys (40% versus 32%) and among black and Hispanic than white children (47%, 36%, and 27%, respectively). Black children with ASD were less likely to have a first evaluation by age 36 months than were white children with ASD (40% versus 45%). The overall median age at earliest known ASD diagnosis (51 months) was similar by sex and racial and ethnic groups; however, black children with IQ ≤70 had a later median age at ASD diagnosis than white children with IQ ≤70 (48 months versus 42 months). Interpretation The prevalence of ASD varied considerably across sites and was higher than previous estimates since 2014. Although no overall difference in ASD prevalence between black and white children aged 8 years was observed, the disparities for black children persisted in early evaluation and diagnosis of ASD. Hispanic children also continue to be identified as having ASD less frequently than white or black children. Public Health Action These findings highlight the variability in the evaluation and detection of ASD across communities and between sociodemographic groups. Continued efforts are needed for early and equitable identification of ASD and timely enrollment in services.

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Parenting stress in mothers and fathers of toddlers with autism spectrum disorders: associations with child characteristics.

Naomi Ornstein Davis, Alice Carter (2008)

Elevated parenting stress is observed among mothers of older children with autism spectrum disorders (ASD), but little is known about parents of young newly-diagnosed children. Associations between child behavior and parenting stress were examined in mothers and fathers of 54 toddlers with ASD (mean age = 26.9 months). Parents reported elevated parenting stress. Deficits/delays in children's social relatedness were associated with overall parenting stress, parent-child relationship problems, and distress for mothers and fathers. Regulatory problems were associated with maternal stress, whereas externalizing behaviors were associated with paternal stress. Cognitive functioning, communication deficits, and atypical behaviors were not uniquely associated with parenting stress. Clinical assessment of parental stress, acknowledging differences in parenting experiences for mothers and fathers of young children with ASD, is needed.

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Developmental disabilities among children younger than 5 years in 195 countries and territories, 1990–2016: a systematic analysis for the Global Burden of Disease Study 2016

Bolajoko O Olusanya, Adrian Davis, Donald Wertlieb … (2018)

Summary Background The Sustainable Development Goals (SDGs) mandate systematic monitoring of the health and wellbeing of all children to achieve optimal early childhood development. However, global epidemiological data on children with developmental disabilities are scarce. The Global Burden of Diseases, Injuries, and Risk Factors Study 2016 provides a comprehensive assessment of prevalence and years lived with disability (YLDs) for development disabilities among children younger than 5 years in 195 countries and territories from 1990 to 2016. Methods We estimated prevalence and YLDs for epilepsy, intellectual disability, hearing loss, vision loss, autism spectrum disorder, and attention deficit hyperactivity disorder. YLDs were estimated as the product of the prevalence estimate and the disability weight for each mutually exclusive disorder, corrected for comorbidity. We used DisMod-MR 2.1, a Bayesian meta-regression tool, on a pool of primary data derived from systematic reviews of the literature, health surveys, hospital and claims databases, cohort studies, and disease-specific registries. Findings Globally, 52·9 million (95% uncertainty interval [UI] 48·7–57·3; or 8·4% [7·7–9·1]) children younger than 5 years (54% males) had developmental disabilities in 2016 compared with 53·0 million (49·0–57·1; or 8·9% [8·2–9·5]) in 1990. About 95% of these children lived in low-income and middle-income countries. YLDs among these children increased from 3·8 million (95% UI 2·8–4·9) in 1990 to 3·9 million (2·9–5·2) in 2016. These disabilities accounted for 13·3% of the 29·3 million YLDs for all health conditions among children younger than 5 years in 2016. Vision loss was the most prevalent disability, followed by hearing loss, intellectual disability, and autism spectrum disorder. However, intellectual disability was the largest contributor to YLDs in both 1990 and 2016. Although the prevalence of developmental disabilities among children younger than 5 years decreased in all countries (except for North America) between 1990 and 2016, the number of children with developmental disabilities increased significantly in sub-Saharan Africa (71·3%) and in North Africa and the Middle East (7·6%). South Asia had the highest prevalence of children with developmental disabilities in 2016 and North America had the lowest. Interpretation The global burden of developmental disabilities has not significantly improved since 1990, suggesting inadequate global attention on the developmental potential of children who survived childhood as a result of child survival programmes, particularly in sub-Saharan Africa and south Asia. The SDGs provide a framework for policy and action to address the needs of children with or at risk of developmental disabilities, particularly in resource-poor countries. Funding The Bill & Melinda Gates Foundation.

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Author and article information

Contributors

Gupta Neha :

Bio :

Neha Gupta is based at the You're Wonderful Project, Delhi, India

Khanna Manya :

Bio :

Manya Khanna is based at the You're Wonderful Project, Delhi, India

Garg Rashi :

Bio :

Rashi Garg is based at the You're Wonderful Project, Delhi, India

Sethi Vedantika :

Bio :

Vedantika Sethi is based at the You're Wonderful Project, Delhi, India

Khattar Shivangi :

Bio :

Shivangi Khattar is based at the You're Wonderful Project, Delhi, India

Tekkar Purva :

Bio :

Purva Tekkar is based at the Potentials Therapy Center, Delhi, India

Maria Shwetha :

Bio :

Shwetha Maria is based at the Potentials Therapy Center, Delhi, India

Gupta Muskan :

Bio :

Muskan Gupta is based at the Potentials Therapy Center, Delhi, India

Saxena Akash :

Bio :

Akash Saxena is based at the You're Wonderful Project, Delhi, India

Gupta Parul :

Bio :

Parul Gupta is based at the Potentials Therapy Center, Delhi, India

Ann Schuchert Sara :

Bio :

Sara Ann Schuchert is based at the Potentials Therapy Center, Delhi, India

Journal

Journal ID (publisher-id): AIA

Journal ID (doi): 10.1108/AIA

Title: Advances in Autism

Abbreviated Title: AIA

Publisher: Emerald Publishing

ISSN: 2056-3868

Publication date (Electronic, pub): 22 May 2023

Publication date (Print, pub): 16 June 2023

Volume: 9

Issue: 3

Pages: 217-240

Affiliations

[1] You're Wonderful Project , Delhi, India

[2] Potentials Therapy Center , Delhi, India

[3] You're Wonderful Project , Delhi, India

[4] Potentials Therapy Center , Delhi, India

Author notes

Neha Gupta can be contacted at: gneha9908@gmail.com

Article

Publisher ID: 702934 Original-pdf ID: AIA-09-2022-0044.pdf Filename ID: AIA-09-2022-0044

DOI: 10.1108/AIA-09-2022-0044

SO-VID: dc0151af-d08c-45d1-b6ec-22062b50789f

History

Date received : 01 September 2022

Date: 05 January 2023

Date: 08 March 2023

Date accepted : 30 March 2023

Page count

Figures: 8, Tables: 1, Equations: 0, References: 65, Pages: 24, Words: 8584

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deliverables Web-ready article package

peer-reviewed Yes

academic-content Yes

EContentType JOURNAL

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ScienceOpen disciplines: Health & Social care

Keywords: Caregiver,Diagnosis,Autism spectrum disorder,Early intervention,Caregiver burden

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ScienceOpen disciplines: Health & Social care

Keywords: Caregiver, Diagnosis, Autism spectrum disorder, Early intervention, Caregiver burden

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

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Emerald: Healthier Lives

Most cited references 62

Prevalence of Autism Spectrum Disorder Among Children Aged 8 Years — Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2016

Parenting stress in mothers and fathers of toddlers with autism spectrum disorders: associations with child characteristics.

Developmental disabilities among children younger than 5 years in 195 countries and territories, 1990–2016: a systematic analysis for the Global Burden of Disease Study 2016

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