Browsing by Author "Viljoen, Marisa"

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    Towards naturalistic developmental behavioural interventions for autism in Africa: nature and context of caregiver-child interactions in low-resource South African environments
    (2022) Ndlovu, Minkateko; de Vries, Petrus J; Franz, Lauren; Viljoen, Marisa
    Naturalistic developmental behavioural interventions (NDBI) are a group of evidence-based early interventions for autism spectrum disorders (ASD). Caregivers can be trained to deliver NDBI strategies during interactions with their young child with ASD. However, NDBI research predominantly comes from high-income countries, and the evidence base for NDBI in low/middle-income countries (LMICs) and across cultures is lacking. To understand the ‘fit' of an NDBI approach in LMICs, it is crucial to understand and be able to measure the nature of interactions between caregivers and their children with ASD and the context wherein caregiver-child interactions occur. This study sought a) to evaluate the utility of a specific measure of caregiver-child dyadic interactions and b) to examine daily routines in which caregiver-child interactions occurred in low-resource South African contexts. Methodology Children with ASD (between 18-72 months old) and their ≥18-year-old caregivers were recruited under a larger project. Interactions of 21 caregiver-child dyads were video-recorded using a standardised parent-child interaction (PCI) protocol with two 6-minute-long free-play sessions (Part I: child explored the room and available toys while the caregiver remained seated; Part II: caregiver interacted with their child as they would at home). Two research-reliable raters rated the videos using 16 items from the Joint Engagement Rating Inventory (JERI), a 7-point Likert scale behavioural coding system. Reliability and descriptive analyses were conducted. Structured interviews were conducted with ten caregivers using the Parent Survey of Home and Family Experiences (PSHFE) to explore the context of daily routines. Descriptive analyses were performed. Results For caregiver-child interactions, observer agreement for 12 of 16 items was reasonable, with weighted kappas (within 1 scale point) of 0.66-1, an estimated accuracy of 88-99%, and percentage agreements of 75-100% for all items. Ratings for items across Parts I and II of the JERI showed variability without any ceiling effects. Six items showed floor effects. Most caregiver item ratings were at the mid-point of the 7-point Likert scale. In Part II, children used more expressive language and paid more attention to their caregivers. On the PSHFE, most children participated daily in various child routines, play and early literacy activities with mothers as main partners. Most children never participated in spiritual and community activities, typically due to the child's age, safety and other reasons not specified in interview response categories. Conclusion Reliability, floor/ceiling, behavioural and Part I vs Part II profiles suggested that the JERI, used for the first time in a South African context, has potential utility both to describe caregiver-child interactions and be used as an intervention outcome measure in LMICs. The PSHFE results provided contextual data of common daily activities into which NDBI strategies could be embedded to support child generalisation of skills in South Africa.
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    Understanding Autism Spectrum Disorder in Context: a comparison of family perceptions in a high income and low/middle-income country
    (2018) Viljoen, Marisa; de Vries, Petrus J
    Background Autism Spectrum Disorder (ASD) affects individuals from all continents, cultures and socio-economic backgrounds. It presents differently in different individuals and functional outcomes can be highly variable dueto the heterogenous nature of ASD. The context or environment in which individuals live interacts with the core characteristics of ASD to determine functional ability or disability. For this reason the World Health Organization International Classification of Functioning, Disability and Health (ICF) includes environmental factors when measuring and describing functioning. ICF core sets for ASD were recently developed, and included a qualitative study with perspectives from five highly divergent countries (Canada, Sweden, India, Saudi Arabia and South Africa). It is, however, not known whether functional themes in these diverse environments were similar or different. We hypothesized that environmental factors would predominate in low-resource settings where they would be perceived as barriers to functioning. Objectives The purpose of this study was therefore to examine the association between context and functional ability/disability in children with ASD. We aimed firstly, to understand the global landscape of parental perceptions of functioningin their children with ASD. Secondly, we set out to compare and contrast parental perceptions of functioning in two of the most divergent countries that participated in the ICF core set development study. We were interested in the frequency of functional items reported by parents/caregivers from a high- income country and a low/middle income country. We were also interested in the content of the functional items reported by parents/caregivers in these two countries. We selected Sweden as example of a high-income country (HIC), and South Africa, as example of a low/middle-income country (LMIC). Methods To meet the first aim, we performed a scoping review. Two researchers conducted a comprehensive search of peer reviewed studies published between 1990 and June 2016. Full-text of all included articles were accessed and summarized using thematic analysis. Key findings relating to the scoping review question were linked to ICF-CY first or second-level categories. To meet the second aim, we performed secondary analysis of qualitative data from the ICF ASD core set study. Using frequency and content analysis we compared South African (n=22) and Swedish (n=13) participants. The identified ICF-CY categories were ranked and compared for similarities and dissimilarities in frequency of reporting and analyzed for similarities and dissimilarities in the content of themes. Results Thirty three studies were included in the scoping review, and most were conducted in HIC (n = 25/33, 76%) with only six studies in LMIC (n = 6/33, 18%). Two studies compared perspectives from LMIC and HIC (n = 2/33, 6%). Functional themes from HIC included a range across the ICF bio- psychosocial framework with body functions, activities & participation, environmental factors and personal factors all represented. Functional themes from LMIC were predominantly focused on environmental and personal factors. We did, however, acknowledge that different methodologies may have biased findings in HIC versus LMIC. Secondary analysis of the ICF ASD Core set qualitative study therefore used data collected in identical manner in South Africa and Sweden. Complete frequency agreement was seen in 4 ICF categories in thetwo countries - three activities & participation categories (carrying out daily routines, dressing, complex interpersonal interactions), and one environmental factor (immediate family). Obvious differences in frequency of reporting were observed in one environmental factors category (health professionals), six body functions categories (e.g. involuntary movement functions, gait patterns, basic cognitive functions, and mental functions of language), and three activities & participation categories (managing one’s own behaviour, speaking, and undertaking a single task). Only three ICF categories (immediate family, attention functions, products and technology for personal use in daily living) differed in content between South Africa and Sweden. Two additional categories were identified namely health professionals and sensory processing. Conclusions Contrary to our hypotheses few differences in parent/caregiver perspectives about environmental factors relevant to functioning in ASD emerged. Perceptions more frequently differed regarding body functions andactivities & participation. The content of perceptions were, with a few exceptions, similar. Our results suggest that the interaction between context and functioning is more complex than we predicted and highlights the importance of subjective perception of contextual factors in relation to functional ability/disability. Given the universality of findings, our results therefore support the global usefulness of the recently developed ICF core sets for ASD. We recommend that more comparative studies on ASD and functioning should be conducted, and that similar comparisons in other disorders where core sets have been developed, such as ADHD, may also be of value.