Positive and negative cognitive appraisal of the impact of children with autism spectrum disorder on the family

Schlebusch, Liezl; Dada, Shakila

doi:10.1016/j.rasd.2018.04.005

Cited by 22 publications

(16 citation statements)

References 40 publications

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“…In low-income settings, families of children with DD tend to receive little or no formal support and are financially strained by healthcare costs and the inability to work due to caring responsibilities ( Colombi & Ghaziuddin, 2017 ; Global Research on Developmental Disabilities Collaborators, 2018 ). Similar challenges have been reported across sub-Saharan Africa ( Ambikile & Outwater, 2012 ; Dambi et al, 2015 ; Gona et al, 2016 ; Schlebusch & Dada, 2018 ; Tilahun et al, 2016 ) often with detrimental effects on the quality of life of children with DD and their families ( Ambikile & Outwater, 2012 ; Schlebusch et al, 2017 ), aggravated by stigma and lack of support by community members, healthcare workers and education professionals ( Ajuwon & Brown, 2012 ; Bakare et al, 2009 ; Gona et al, 2016 ; Tekola et al, 2016 ; Tilahun et al, 2016 ). The inadequacy or absence of specialist child mental healthcare has been noted in several African countries, including Uganda, Ethiopia, Kenya, Ghana, Zambia and to some extent South Africa ( Akol et al, 2015 ; Getanda et al, 2017 ; Kleintjes et al, 2010 ; Tekola et al, 2020 ; Tilahun et al, 2016 ; Van Schalkwyk et al, 2016 ).…”

Section: Introductionsupporting

confidence: 61%

Stakeholder experiences, attitudes and perspectives on inclusive education for children with developmental disabilities in sub-Saharan Africa: A systematic review of qualitative studies

Genovesi

Jakobsson

Nugent

et al. 2022

Autism

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Inclusive education is a key strategy in addressing the needs of children with autism and other developmental disabilities in sub-Saharan Africa, who rarely access specialist care or quality education. We aimed to systematically review qualitative research on stakeholder experiences, attitudes and perspectives on inclusive education for pupils with developmental disabilities in mainstream schools in sub-Saharan Africa. We searched five databases and selected relevant studies through a two-stage screening process. We synthesised the papers identified through template analysis of the Results and Discussion sections, guided by the Consolidated Framework for Implementation Research. Thirty-two publications met the inclusion criteria. The studies were conducted in seven countries and explored the experiences of pupils with developmental disabilities, parents, peers without developmental disabilities and teachers. Multiple barriers (e.g. unclear policies, insufficient training and support for teachers) and opportunities (e.g. teachers’ commitment to inclusion, collaboration between teachers, the work of non-governmental organisations (NGOs)) for implementing inclusive education for pupils with developmental disabilities in sub-Saharan Africa were identified, occurring across national and community contexts and school, classroom and individual teacher levels. To effectively implement inclusive education for pupils with developmental disabilities, teachers need access to appropriate training, resources and support. Governments can capitalise on motivated teachers and the relevant work of NGOs. Lay abstract In sub-Saharan Africa, there are few services for children with developmental disabilities such as autism and intellectual disability. One way to support these children is to include them in mainstream schools. However, currently, African children with developmental disabilities are often excluded from mainstream education opportunities. People involved (e.g. teachers, families and children) can offer information on factors that could ease or interfere with inclusion. This article discusses the findings of published studies that explored the views of relevant groups on including children with developmental disabilities in mainstream schools in sub-Saharan Africa. We systematically searched the literature and identified 32 relevant articles from seven countries in sub-Saharan Africa. We found that unclear policies and insufficient training, resources and support for teachers often blocked the implementation of inclusive education. Factors in favour of inclusive education were the commitment of many teachers to include pupils with developmental disabilities and the work of non-governmental organisations (NGOs), which provided resources and training. This review suggests that motivated teachers should be provided with appropriate training, resources and support for inclusive education, directly and by promoting the work of NGOs.

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Section: Introductionsupporting

confidence: 61%

Stakeholder experiences, attitudes and perspectives on inclusive education for children with developmental disabilities in sub-Saharan Africa: A systematic review of qualitative studies

Genovesi

Jakobsson

Nugent

et al. 2022

Autism

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“…Research into the positive impacts of ASD on families is encouraging but is only relatively recent. Additionally, there are areas such as parental resilience, traumatic growth, family relationship, different aspects of development, and appreciation of life and enrichment of relationships that would benefit further research [ 83 , 84 , 85 ]. Positive psychology has already recommended similar approaches within the field of developmental disabilities research [ 66 , 67 , 68 ].…”

Section: Discussionmentioning

confidence: 99%

Understanding Different Aspects of Caregiving for Individuals with Autism Spectrum Disorders (ASDs) a Narrative Review of the Literature

Samadi

2020

Brain Sciences

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Background: There has been a considerable endeavor to understand associated challenges of caregiving for a child with Autism Spectrum Disorders (ASDs) and to develop the necessary skills and approaches to assist parents of children with ASD. Different studies have been stressed the importance and need for parental involvement in the intervention process to increase positive impacts. Methods: The process of caregiving and the associated challenges should be understood from different aspects to be able to facilitate parent involvement in intervention implementation. In a narrative literature review, ten selected reviews were considered and each review considered a special aspect of caregiving for an individual with ASD. Results: Five main different factors in the available literature and reviews were considered as different themes that needed to be reconsidered in the studies on the impacts of caregiving for an individual with ASD. Conclusions: It is concluded that to facilitate parental involvement in the intervention process, and to support caregivers of this group of individuals this review highlights the need for improved research in some proposed areas in this field and to bridge the gap between research and practice in this field.

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“…La condición de discapacidad en un miembro de la familia puede conllevar que el funcionamiento y estilo de vida habitual de la familia se vea transformado (Benito y Carpio, 2017;Reichman et al, 2008). La parentalidad de un hijo con discapacidad genera, en el sistema familiar, la coexistencia de una serie de experiencias tanto positivas como negativas que condicionan su dinámica, así como la vivencia de la paternidad y crianza del hijo con discapacidad (Luijkx et al, 2019;Rajan y John, 2017;Schlebusch y Dada, 2018;Uribe-Morales, 2022). El momento de la primera noticia, correspondiente a la comunicación del diagnóstico de la discapacidad, implica una gran carga emocional para los padres, marcando un hito en la historia de vida familiar y en los posteriores procesos de aceptación y adaptación (Ponte et al, 2012).…”

Section: Introductionunclassified

Perspectivas familiares sobre la vivencia paternofilial de la discapacidad intelectual: una mirada fenomenológica

Fernández

2022

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Introducción: La revisión de la literatura científica ha puesto de manifiesto que tener un hijo con discapacidad supone un impacto heterogéneo a nivel familiar. Método: El presente estudio tiene como objetivo analizar en profundidad la vivencia paternofilial de la discapacidad intelectual. Debido a la naturaleza cualitativa de la investigación, se optó por atenerse al método fenomenológico abordado desde la perspectiva hermenéutica interpretativa propuesta por Heidegger. Los datos se recogieron a través de entrevistas no estructuradas en profundidad, realizadas a 15 padres y madres de 9 niños con discapacidad intelectual. Resultados: Los resultados arrojan que la vivencia de la discapacidad intelectual en la familia no responde a un patrón común, a pesar de poder ser identificadas una serie de categorías nucleares que permiten la consideración de dichas vivencias: “la primera noticia y el impacto del diagnóstico”; “la vivencia de la discapacidad desde la heterogeneidad de las estructuras familiares”; “los procesos personales, familiares y sociales de aceptación”; “la experiencia educativa”, y “la incertidumbre ante el futuro”. Conclusiones: La investigación sobre el modo en el que padres y madres entienden la crianza de sus hijos con discapacidad resulta esencial y estratégica para el desarrollo de programas de intervención centrados en la familia.

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Positive and negative cognitive appraisal of the impact of children with autism spectrum disorder on the family

Cited by 22 publications

References 40 publications

Stakeholder experiences, attitudes and perspectives on inclusive education for children with developmental disabilities in sub-Saharan Africa: A systematic review of qualitative studies

Stakeholder experiences, attitudes and perspectives on inclusive education for children with developmental disabilities in sub-Saharan Africa: A systematic review of qualitative studies

Understanding Different Aspects of Caregiving for Individuals with Autism Spectrum Disorders (ASDs) a Narrative Review of the Literature

Perspectivas familiares sobre la vivencia paternofilial de la discapacidad intelectual: una mirada fenomenológica

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