Perceived Burden in Caregivers of Children with Autism Spectrum Disorder

Pandey, Shrijana; Sharma, Chetan

doi:10.33314/jnhrc.v16i2.896

Cited by 13 publications

(11 citation statements)

References 19 publications

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“…Interestingly, most caregivers claimed not to have any health problems and considered their health status to be good/stable. However, this differs from the study presented by Pandey and Sharma [26], which concluded that providing 24/7 care to a PSN for many years considerably affects the caregiver's physical health. Patel et al [9] added that a general health status can be impaired mainly in low-income populations.…”

Section: Discussioncontrasting

confidence: 94%

“…The authors stated that these caregivers could be reliably identified by administering the ZBI scale alone and their data confirm the anxiety-related overload shown in other studies [21,23]. The moderate overload found seems consistent with the findings of several other studies [26][27][28], although Moreira et al [29] and Estrada-Hernandez [23] demonstrated more intense overload. Despite a moderate burden being identified in our study, the caregivers did not declare substantially elevated anxiety; on the contrary, they showed general compliance and satisfaction with access to dental care services dedicated to PSN.…”

Section: Discussionsupporting

confidence: 80%

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Preliminary Assessment of the Quality of Life and Daily Burden of Caregivers of Persons with Special Needs: A Questionnaire-Based, Cross-Sectional Survey

Cardoso

Silva-Júnior

Bastos

et al. 2023

IJERPH

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Caregivers of persons with special needs (PSN) experience a variety of burdens and elevated levels of stress and anxiety throughout their lives, leading to a physical, psychological, emotional, social, and financial overload. This analytical study with a cross-sectional design and a quantitative approach aimed to appraise quality of life (QoL), reflecting the daily workload of informal family caregivers of PSN. Methods: Four structured, validated questionnaires were utilised: sociodemographic, WHOQOL-bref, Zarit Burden Interview, and Functional Independence Measure Scale in 60 anonymous volunteered respondents. Results: The informal caregivers were middle-aged mothers (81.7%), married (55%), stay-at-home spouses (60%) with high school degrees (51.6%), providing a care for their relatives with special needs for more than 20 years (41.8%). Most of the PSN were diagnosed with autistic spectrum disorder (ASD, 61.8%), had a wide spectrum of intellectual deficits, and required constant support for their basic needs. They were mainly adolescent males without physical limitations (83.4%) on disorder-specific medications (90%). The study revealed that those caregivers had a median perception of QoL considering four essential domains, with a highest score recorded for the physical domain (64.3 +/− 16.1 SD). A moderate burden level prevailed, revealing neither a correlation between the workload expressed by caregivers and the patient’s functional capacity, nor in the performance of daily self-care tasks (Spearman correlation test p > 0.05), apart from the environmental domain (mild correlation = 0.335, p < 0.05). Conclusions: The reported average level of overload associated with QoL of informal caregivers exists, affecting a vast proportion of the respondents. The absence of a direct association between workload and the functional capacity/daily self-care tasks can be related to the significant personal dedication of family caregivers, regardless of their socioeconomic status.

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Section: Discussioncontrasting

confidence: 94%

Section: Discussionsupporting

confidence: 80%

Preliminary Assessment of the Quality of Life and Daily Burden of Caregivers of Persons with Special Needs: A Questionnaire-Based, Cross-Sectional Survey

Cardoso

Silva-Júnior

Bastos

et al. 2023

IJERPH

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“…A total score was calculated by the sum of all the item scores and high scores indicate a higher level of burden. Scores were interpreted as 0-20: no burden, 21-40: mild to moderate burden, 41-60: moderate to severe burden and 61-88 severe burden according to Modified Zarit Burden Interview Scale [4].…”

Section: Study Design and Settingmentioning

confidence: 99%

Psychological Burden among Caregivers of Children with Autism Spectrum Disorder at Special Schools

Kamati,

Shah,

B.E.

2021

MedS J. Med. Sci.

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INTRODUCTION: The alarming increase in the prevalence of autism has cause not only an increase in the number of cases of autism but also increased need for better awareness and understanding of the condition and its management for them who are in direct daily contact with someone with autism. The support for caregivers of autism spectrum disorder children is highly needed to minimize their experienced burden. The objective of this study was to assess the psychological burden among caregivers of children with autism spectrum disorder. MATERIALS AND METHODS: Quantitative non-experimental descriptive research design was adopted for the study. The data was collected from 70 samples with the Modified Zariet Burden Interview Scale. Collection of data was entered into Ms-excel and was analyzed and interpreted using SPSS Software. RESULTS: The present study revealed that majority (56%) sample has mild to moderate burden, (24%) has little or no burden, (19%) has moderate to severe burden and the least (1%) has severe burden. The demographic variables such as educational level, monthly income, training received regarding care of the child were directly associated with psychological burden of the caregivers. CONCLUSIONS: The study concluded that assessing the burden level of caregiver can help them to reduce their burden through proper counselling.

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“…The caretakers had a considerable source of income from their private or governmental jobs while most mothers were homemakers. A similar study conducted in Nepal showed that employment has no significant association with the caregiver’s burden 23 .…”

Section: Discussionmentioning

confidence: 92%

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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Perceived Burden in Caregivers of Children with Autism Spectrum Disorder

Cited by 13 publications

References 19 publications

Preliminary Assessment of the Quality of Life and Daily Burden of Caregivers of Persons with Special Needs: A Questionnaire-Based, Cross-Sectional Survey

Preliminary Assessment of the Quality of Life and Daily Burden of Caregivers of Persons with Special Needs: A Questionnaire-Based, Cross-Sectional Survey

Psychological Burden among Caregivers of Children with Autism Spectrum Disorder at Special Schools

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

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