Perceived Burden in Caregivers of Children with Autism Spectrum Disorder in Kathmandu Valley

Pandey, Shrijana; Sharma, Chetan

doi:10.3126/jnhrc.v16i2.20308

Cited by 16 publications

(15 citation statements)

References 19 publications

(29 reference statements)

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“…One study from India showed that mothers of children with ASD experience stress due to low awareness and reduced accessibility to therapy services (Divan et al, 2012;Patra et., 2015). In this study, most of the children were diagnosed with ASD, providing a common platform for brainstorming solutions in the groups.…”

Section: Discussionmentioning

confidence: 99%

Occupational Performance Coaching for Mothers of Children with Disabilities in India

Angelin¹,

Sugi²,

Rajendran³

2020

Can J Occup Ther

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Background. Occupational Performance Coaching (OPC) aims to help mothers plan and manage theirs and their children’s occupational performance. Purpose. To assess the effectiveness of OPC in improving occupational performance and parenting competence of mothers of children with disabilities in an Indian context. Methods. Mixed method design was used. Thirty-six mothers were assigned to intervention or control groups. Occupational performance and parenting competence were measured at three time points. Semi-structured interviews were used. Findings. OPC had significant effects on children’s occupational performance ( p < 0.001), mothers’ occupational performance ( p < 0.001), and self-competence ( p = 0.003). There was also a significant difference between control and intervention groups in occupational performance ( p = 0.001) and satisfaction ( p = 0.003). Interviews revealed three themes: acceptance, self-learning, and challenges during OPC. Implications. OPC is effective in improving the occupational performance and parenting competence of mothers of children with disabilities in varied cultural contexts.

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Section: Discussionmentioning

confidence: 99%

Occupational Performance Coaching for Mothers of Children with Disabilities in India

Angelin¹,

Sugi²,

Rajendran³

2020

Can J Occup Ther

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“…No obstante, el trabajo de Cid-García (2016) evidencia que el grado de severidad del trastorno del espectro autista se correlaciona significativamente con la presencia de sintomatología depresiva en el cuidador primario. Además, la sobrecarga está relacionada con el estado emocional y la vida social de los cuidadores, la cual se puede encontrar disminuida o reducida (Pandey & Sharma, 2018). Por otra parte, se ha evidenciado que las características personales no son significativas en el índice de sobrecarga (Misquiatti et al, 2015).…”

Section: Discussionunclassified

Calidad de vida y sobrecarga en cuidadores primarios de población infantil con Trastorno del Espectro Autista de la ciudad de Manizales

Mesa

Reyes

López³

2021

cuad.hispanoam.psicol

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Los cuidadores primarios de niños con autismo muestran menor calidad de vida, mayor sobrecarga y depresión. El objetivo del presente estudio es determinar la relación entre calidad de vida y sobrecarga en cuidadores primarios de niños con trastorno del espectro autista (TEA) que asisten al Instituto para el desarrollo integral del niño autista. La presente investigación es de corte descriptivo, correlacional y transversal. La muestra, intencional y por conveniencia, estuvo conformada por 29 cuidadores primarios de niños y niñas con TEA. El análisis de la información, recolectada mediante la encuesta sociodemográfica, la escala de sobrecarga del cuidador de Zarit, la encuesta PHQ-9 y la encuesta SF-36, se llevó a cabo mediante el software de procesamiento estadístico SPSS, versión 21. No se evidenciaron alteraciones en las tres variables evaluadas. Los resultados se discuten a la luz de la literatura científica sobre el tema, y los hallazgos permitirán generar políticas públicas enfocadas en el cuidador, para diseñar y fortalecer programas de intervención familiar.

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“…Items ask how the caregivers feel, and responses range from 0 to 4 (never to nearly always). The ZBI has been used to assess burden among caregivers of individuals with ASD [62-68]. Using the ZBI, caregivers of individuals with ASD have been found to experience greater burden of care than other caregivers [63] and burden was related to unmet need in young people with ASD, for example, depression, anxiety, and inappropriate behavior [61,69].…”

Section: Methodsmentioning

confidence: 99%

Caregiver Daily Reporting of Symptoms in Autism Spectrum Disorder: Observational Study Using Web and Mobile Apps

Bangerter¹,

Manyakov²,

Lewin³

et al. 2019

JMIR Ment Health

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Background Currently, no medications are approved to treat core symptoms of autism spectrum disorder (ASD). One barrier to ASD medication development is the lack of validated outcome measures able to detect symptom change. Current ASD interventions are often evaluated using retrospective caregiver reports that describe general clinical presentation but often require recall of specific behaviors weeks after they occur, potentially reducing accuracy of the ratings. My JAKE, a mobile and Web-based mobile health (mHealth) app that is part of the Janssen Autism Knowledge Engine—a dynamically updated clinical research system—was designed to help caregivers of individuals with ASD to continuously log symptoms, record treatments, and track progress, to mitigate difficulties associated with retrospective reporting. Objective My JAKE was deployed in an exploratory, noninterventional clinical trial to evaluate its utility and acceptability to monitor clinical outcomes in ASD. Hypotheses regarding relationships among daily tracking of symptoms, behavior, and retrospective caregiver reports were tested. Methods Caregivers of individuals with ASD aged 6 years to adults (N=144) used the My JAKE app to make daily reports on their child’s sleep quality, affect, and other self-selected specific behaviors across the 8- to 10-week observational study. The results were compared with commonly used paper-and-pencil scales acquired over a concurrent period at regular 4-week intervals. Results Caregiver reporting of behaviors in real time was successfully captured by My JAKE. On average, caregivers made reports 2-3 days per week across the study period. Caregivers were positive about their use of the system, with over 50% indicating that they would like to use My JAKE to track behavior outside of a clinical trial. More positive average daily reporting of overall type of day was correlated with 4 weekly reports of lower caregiver burden made at 4-week intervals (r=–0.27, P=.006, n=88) and with ASD symptoms (r=–0.42, P<.001, n=112). Conclusions My JAKE reporting aligned with retrospective Web-based or paper-and-pencil scales. Use of mHealth apps, such as My JAKE, has the potential to increase the validity and accuracy of caregiver-reported outcomes and could be a useful way of identifying early changes in response to intervention. Such systems may also assist caregivers in tracking symptoms and behavior outside of a clinical trial, help with personalized goal setting, and monitoring of progress, which could collectively improve understanding of and quality of life for individuals with ASD and their families. Trial Registration ClinicalTrials.gov NCT02668991; https://clinicaltrials.gov/ct2/show/NCT02668991

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Perceived Burden in Caregivers of Children with Autism Spectrum Disorder in Kathmandu Valley

Cited by 16 publications

References 19 publications

Occupational Performance Coaching for Mothers of Children with Disabilities in India

Occupational Performance Coaching for Mothers of Children with Disabilities in India

Calidad de vida y sobrecarga en cuidadores primarios de población infantil con Trastorno del Espectro Autista de la ciudad de Manizales

Caregiver Daily Reporting of Symptoms in Autism Spectrum Disorder: Observational Study Using Web and Mobile Apps

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