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Caregiver descriptions of joint activity routines with young children with autism spectrum disorder in South Africa.

ABSTRACT: Background:Coaching caregivers to deliver Naturalistic Developmental Behavioral Intervention (NDBI) strategies to their young child with autism spectrum disorder (ASD) could help address the provider capacity barrier in sub-Saharan Africa. However, the behavioral and developmental research that underpins NDBIs is overwhelmingly drawn from high resource settings. Therefore, our understanding of joint activity routines, including play and family routines in which NDBI strategies are embedded, may have limited applicability in low resource, culturally diverse environments. Important questions remain on how to adapt NDBIs to be relevant in the family lives in these settings. This study aimed to elicit descriptions of joint activity routines from caregivers of young children with ASD in South Africa, to understand whether an NDBI-informed caregiver coaching could 'fit' within the multicultural, multilingual South African context. Methods:Four focus groups were conducted with 22 caregivers of young children with ASD who were recruited from the Western Cape Education Department autism waiting list. Data were analyzed through directed content analysis, which uses inductive methods to determine salient themes and subthemes. The predetermined initial coding classifications were based on joint activity routine categories of object-based play, sensory social routines, and family routines. Results:Participants' descriptions of caregiver-child interactions aligned with a-priori joint activity routine categories. During object-based play, caregivers engaged in turn-taking, taught developmental skills (for example cognitive, language, and fine motor skills), and participated in child-directed activities. During sensory social routines, caregivers described active, physical play, awareness of child affect, increased child expressive language, and willingness to engage with different play partners. During family routines, caregivers detailed child participation in mealtime and bath time. Conclusions:These data suggest that South African caregivers of young children with ASD use joint activity routines to engage their children and teach them new skills, thus suggesting a degree of 'fit' between South African caregiver-child interactions and an NDBI-informed caregiver coaching approach. However, more information on family routines and which caregiver interacts with the young child with ASD during these routines would help tailor these interventions for low-resource African settings.

SUBMITTER: Ramseur K

PROVIDER: S-EPMC6481954 | biostudies-literature | 2019 Mar

REPOSITORIES: biostudies-literature

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Caregiver descriptions of joint activity routines with young children with autism spectrum disorder in South Africa.

Ramseur Kevin K de Vries Petrus J PJ Guler Jessy J Shabalala Nokuthula N Seris Noleen N Franz Lauren L

Pediatric medicine (Hong Kong, China) 20190313

<h4>Background</h4>Coaching caregivers to deliver Naturalistic Developmental Behavioral Intervention (NDBI) strategies to their young child with autism spectrum disorder (ASD) could help address the provider capacity barrier in sub-Saharan Africa. However, the behavioral and developmental research that underpins NDBIs is overwhelmingly drawn from high resource settings. Therefore, our understanding of joint activity routines, including play and family routines in which NDBI strategies are embedd ...[more]

PMID: 31032484

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Project description:Background:A lack of specialists, and insufficient infrastructure and funding to scale early interventions for autism spectrum disorder (ASD) characterize low-resource settings. Integration of early intervention methods that utilize non-specialists, and involve caregivers, into existing systems of care, offers the best hope to address such unmet needs. In South Africa, a caregiver coaching intervention, informed by principles of the Early Start Denver Model (ESDM) was adapted for delivery by non-specialist Early Childhood Development (ECD) practitioners. This study explored perceived barriers and facilitators to sustainable implementation of this approach. Methods:Nine stakeholders including caregivers, ECD practitioners, ECD school supervisors, and certified South African ESDM therapists involved in intervention implementation were purposively sampled, and individual in-depth interviews were conducted. Interviews were transcribed verbatim and thematically analyzed. Results:Implementation facilitators included: ECD practitioner ASD knowledge and ongoing supervision; a positive coaching experience; and clear illustration of intervention concepts. Implementation barriers included: complexity of some intervention and coaching concepts; logistical challenges such as time constraints and internet access; and mismatch between video content and the South African context. Facilitators to sustain the intervention included perceived positive child and caregiver outcomes; and ongoing supervision. Barriers to sustain the intervention included socio-economic contextual factors. Conclusions:In spite of the potential for positive child and caregiver outcomes from caregiver coaching, broader contextual and system-level issues such as poverty, the need for ongoing supervision, and access to local coaching materials in South African languages, may challenge sustainable implementation. Findings from this study will inform tailoring of the intervention training and supervision approach for next step evaluation.

Project description:Recent research on autism spectrum disorders (ASDs) suggests that individuals with autism may have a basic deficit in synchronizing with others, and that this difficulty may lead to more complex social and communicative deficits. Here, we examined synchronization during an open-ended joint improvisation (JI) paradigm, called the mirror game (MG). In the MG, two players take turns leading, following, and jointly improvising motion using two handles set on parallel tracks, while their motion tracks are recorded with high temporal and spatial resolution. A series of previous studies have shown that players in the MG attain moments of highly synchronized co-confident (CC) motion, in which there is no typical kinematic pattern of leader and reactive follower. It has been suggested that during these moments players act as a coupled unit and feel high levels of connectedness. Here, we aimed to assess whether participants with ASD are capable of attaining CC, and whether their MG performance relates to broader motor and social skills. We found that participants with ASD (n = 34) can indeed attain CC moments when playing with an expert improviser, though their performance was attenuated in several ways, compared to typically developing (TD) participants (n = 35). Specifically, ASD participants had lower rates of CC, compared with TD participants, which was most pronounced during the following rounds. In addition, the duration of their CC segments was shorter, across all rounds. When controlling for participants' motor skills (both on the MG console, and more broadly) some of the variability in MG performance was explained, but group differences remained. ASD participants' alexithymia further correlated with their difficulty following another's lead; though other social skills did not relate to MG performance. Participants' subjective reports of the game suggest that other cognitive and emotional factors, such as attention, motivation, and reward-processing, which were not directly measured in the experiment, may impact their performance. Together, these results show that ASD participants can attain moments of high motor synchronization with an expert improviser, even during an open-ended task. Future studies should examine the ways in which these skills may be further harnessed in clinical settings.

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Caregiver descriptions of joint activity routines with young children with autism spectrum disorder in South Africa.

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Caregiver descriptions of joint activity routines with young children with autism spectrum disorder in South Africa.

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