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  1. Home
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Browsing by Subject "Autism Spectrum Disorder"

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    Barriers and Facilitators to Implementing a Caregiver-Coaching Early ASD Intervention in South Africa
    (2019) Makombe, Chipo Belindah Theodorah; Shabalala, Nokuthula; Franz, Lauren
    Sub-Saharan Africa (SSA) has a scarcity of research on autism spectrum disorder (ASD) and available early interventions, as most of what is known about the disorder is from highincome countries. Early detection and intervention methods were found to have positive effects on developmental delays and to alleviate symptom severity in children with ASD or at risk of it. There is a need for scalable interventions in low-resource settings, which are characterised by a lack of highly-trained specialists, infrastructure and funding. This study explored the barriers and facilitators to implementing and sustaining a caregiver-coaching ASD early intervention, informed by the principles of the Early Start Denver Model (ESDM), adapted for South Africa and for delivery by non-specialists. The study also identified some changes that could be made to improve intervention adoption and sustainability. Nine multilevel stakeholders involved in the implementation of the caregiver-coaching intervention were purposively sampled, individual in-depth interviews were conducted, transcribed verbatim and thematically analysed. Major implementation facilitators included: ECD worker baseline ASD knowledge and experience; skills gained from the training received and coaching; clear in-session caregiver-coaching structure; value of strong team relationships; clear video illustration of intervention concepts; and the mastery and generalisation of skills by the ECD workers, ECD supervisors and caregivers. Implementation barriers included: the complexity of the intervention and coaching concepts; misalignment of ECD teacher training with the caregiver-coaching approach; logistical challenges; and mismatch of the video content with the South African context. Facilitators to sustain the intervention included: child outcomes; caregiver ‘buy-in;’ and competence; and the need for ongoing live supervision. Barriers to sustaining the intervention included: structural issues of poverty, transportation and unemployment. Positive child and caregiver outcomes could be offset by larger contextual and system-level issues such as poverty and the need for ongoing support, supervision and local coaching materials in South African languages. The results will inform tailoring of the intervention training and supervision approach for a larger pilot study.
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    Implementing a group intervention programme emphasising early communication stimulation with parents of children with autism spectrum disorder
    (2020) Osman-Kagee, Aneesa; Harty, Michal
    Introduction: Implementing low-intensity interventions, such as group-based parent education and training (PET), is a cost and time effective way of providing early intervention for families and their children with autism spectrum disorder (ASD) in low- and middle-income countries (LMICs). Relatively little empirical research demonstrates the effectiveness of parent education and training in this context. Methods: The study aimed to develop and pilot a group-based parent education and training (PET) programme (COMPAS) and determine its appropriateness and acceptability. Secondly, it aimed to investigate the clinical effectiveness of the programme to improve the communication interaction skills and self-efficacy beliefs of parents of young children with autism. The study followed an exploratory sequential mixed methods research design and used the Replicating Effective Programs (REP) framework. Sixty-one participants took part in the study which consisted of 3 phases. In phase one we developed the programme and teaching materials and activities. In the pre-implementation phase, we collected qualitative and quantitative data via questionnaires from two stakeholder groups (25 parents and 5 autism experts). In the implementation phase, we used a single group pre-test post-test design with 31 parents of children with autism to determine changes in parent-child interaction and parenting self-efficacy. The primary outcome of the implementation phase, parent-child interaction, was measured using the Parenting Interactions with Children: Checklist of Observations Linked to Outcomes (PICCOLO), and the secondary outcome, parenting self-efficacy, was measured using the Parenting Sense of Competence Scale (PSOC) and the Parenting Self-Efficacy Measuring Instrument (P-SEMI). Results: In the pre-implementation phase, a panel of experts agreed the training content was comprehensive and relevant, and that the manual was user-friendly. After the pilot study parents felt confident that they could use at least one of the strategies taught during everyday routines or play with their child. Results from the implementation phase indicated significant improvement in parenting interactions (p < .05, d = 1.26) and self-efficacy (p < .05, d = 0.35) after the training. Conclusion: We developed and piloted a training programme in a LMIC setting which resulted in increased interaction skills and self-efficacy for parents of young children with autism. This study indicates that brief, group parent education and training in a LMIC is feasible and can be effective in improving parenting skills and feelings of competence.
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    Parent perceptions of screen time use in young children with Autism Spectrum Disorder
    (2022) Ebrahim, Faatima Omarjee; Gretschel, Pamela; Abbas, Iesrafeel
    Screen time (ST) relates to accessing and engaging with electronic media, technology and devices that involves any type of screen. The global advancement and increasing availability of technology, together with the impact of COVID-19 pandemic restrictions on social engagement, appears to have led to a growing presence of ST in the lives of young children with autism spectrum disorder (ASD). Excessive ST has been associated with developmental delays, sleep disturbances, reduced physical activity and other health problems which can have significant negative impacts on the occupational engagement of children with ASD. Despite these concerns, little to no research focussing on ST use by children with ASD, nor of its impacts on their engagement in other occupations, has been conducted in middle-income countries, like South Africa. A qualitative descriptive design, using semi-structured, in-depth interviews with seven purposively selected participants in line with maximum variation, was used to explore and describe parents' perceptions of ST of their children with ASD. The study aimed to promote a better understanding of how and why their children used ST, what the effect of ST was on their children's lives, what strategies their parents used to mediate ST and the impact that the COVID19 pandemic had on ST use. The information gained will be used to inform intervention guidelines for the management of ST and for optimising its use, for children with ASD. Through a process of thematic analysis, four themes emerged from the data. The theme Seeking out ST opportunities described how children used ST in keeping with their interests and how their limited interest in non-ST activities made them seek opportunities for ST. Theme two, ST, a mixed blessing confirmed how parents viewed ST to have both benefits and drawbacks for their children and described how they tried to come to terms with ST as it created opposing effects in their children's lives. Theme three Striving to provide conditional access to ST found that these parents used a variety of restrictive mediation strategies to manage their child's ST, whilst trying to avoid the stress caused by limiting ST and allowing for its use under certain conditions. The fourth theme COVID-19 “intensified the whole screen time business” highlighted how ST became an appealing replacement during the pandemic adding new challenges that parents experienced with managing its use. Overall, these findings acknowledged the challenges and positive contributions that parents of children with ASD experienced because of ST of their children, which were exacerbated during the COVID-19 pandemic. This study supports the need for early childhood interventionists to consider ST as a significant occupation of children with ASD, that requires attention.
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    The biological bases of social deficits: the roles of social motivation, theory of mind, and selected genotypes (OPRM1, 5-HTTLPR) in autism spectrum disorder
    (2020) Hamilton, Kate; Malcolm-Smith, Susan; Donald, Kirsty
    Autism Spectrum Disorder (ASD) is a diverse disorder, and the heterogenous range of possible presentations hinders our understanding of its aetiology. Recently there has been a surge of genome wide association studies for ASD, while historically psychological theories were relied on to explain the emergence of ASD. These fields continue to provide insights into ASD, but they tend to operate in parallel – genetic studies often lack comprehensive psychological phenotyping and theoretical backing, and psychological studies tend to lack genetic explanations. I propose that moving forward, genotype-phenotype studies should have a strong foundation in both fields and should focus on genes and theories with realworld implications for ASD diagnostics and/or interventions. This approach can be supported by focusing on established, well supported psychological theories, and selected ASD candidate genes that could be implicated in these theories, and ideally the genetic mechanism implicated should be one that can be targeted by existing medications. I therefore selected two prominent psychological theories, the Social Motivation Theory for ASD (Panksepp, 1979) and the ToM Theory for ASD (Baron-Cohen et al., 1985), and selected an ASD candidate gene that was likely implicated in each of these theories, namely the mu-opioid receptor gene (OPRM1) and the serotonin transporter promoter length polymorphism (5-HTTLPR) respectively. For the first study of this protocol, I assessed the possible relationships between social motivation, OPRM1, and the ASD phenotype. For the second study, I assessed possible relationships between ToM deficits, 5-HTTLPR, and the ASD phenotype. These two studies shared a sample of 153 male children 4-16 years old; 51 boys per group (i.e. non-verbal ASD; verbal ASD; neurotypical). All ASD children completed ADOS2 assessment for ASD phenotyping. For the Social Motivation Study, attachment was used as a proxy to assess level of social motivation in all participants, and 76 of the 102 children with ASD provided DNA for OPRM1 genotyping. Comparisons across all three groups showed that the ASD samples had significantly lower social motivation than the neurotypical sample, with the non-verbal ASD group displaying the most severely reduced level of social motivation. Reduced social motivation was associated with ASD-related deficits in the non-verbal ASD sample but not the verbal ASD sample. Finally, I was unable to statistically assess the role of OPRM1 as hypothesized, due to an unprecedentedly high rate of the OPRM1 G allele, which indicated atypical mu-opioid processes. This clearly implicated OPRM1 in ASD and is the first study to show this so convincingly. Overall, this study's findings led me to suggest that Panksepp's (1979) theory could be updated to include a threshold effect such that more severely reduced social motivation in ASD is associated with little-to-no language acquisition, while those with less severely reduced social motivation are able to develop language and this protects against associations between social motivation and ASD-related deficits in childhood. For the Theory of Mind Study, the verbal ASD sample and neurotypical sample completed a developmental ToM Battery (i.e. University of Cape Town Theory of Mind Battery) and WASI assessment to establish verbal intelligence quotient (VIQ) scores, and 70 of the children with ASD were successfully genotyped for 5-HTTLPR. This study found that verbal male children with ASD tended to be one developmental stage behind age-matched neurotypical peers on ToM tasks. ToM deficits were associated with greater impairment in overall ASD severity and in symptoms from the social communication and interaction domain. For the non-verbal ASD sample, the 5-HTTLPR short allele, which is implicated in atypical serotonergic transmission, was associated with greater impairment overall and in the restricted and repetitive behaviours and interests symptom domain. No associations between 5-HTTLPR and ToM, or with ASD-related symptoms, was found for the verbal ASD group. This again suggested that language acquisition is an important consideration in genotypephenotype studies in male children with ASD.
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