Browsing by Author "Franz, Lauren"

Objective

Study design

Results

Conclusions

Background: Autism Spectrum Disorder (ASD) is a major global health challenge as the majority of individuals with ASD live in low- and middle-income countries (LMICs) and receive little to no services or support from health or social care systems. Despite this global crisis, the development and validation of ASD interventions has almost exclusively occurred in high-income countries, leaving many unanswered questions regarding what contextual factors would need to be considered to ensure the effectiveness of interventions in LMICs. This study sought to conduct explorative research on the contextual adaptation of a caregiver-mediated early ASD intervention for use in a low-resource setting in South Africa.

Methods: Participants included 22 caregivers of children with autism, including mothers (n=16), fathers (n=4), and grandmothers (n=2). Four focus groups discussions were conducted in Cape Town, South Africa with caregivers and lasted between 1.5-3.5 hours in length. Data was recorded, translated, and transcribed by research personnel. Data was then coded for emerging themes and analyzed using the NVivo qualitative data analysis software package.

Results: Nine contextual factors were reported to be important for the adaptation process including culture, language, location of treatment, cost of treatment, type of service provider, familial needs, length of treatment, support, and parenting practices. One contextual factor, evidence-based treatment, was reported to be both important and not important for adaptation by caregivers. The contextual factor of stigma was identified as an emerging theme and a specifically relevant challenge when developing an ASD intervention for use in a South African context.

Conclusions: Eleven contextual factors were discussed in detail by caregivers and examples were given regarding the challenges, sources, and preferences related to the contextual adaptation of a parent-mediated early ASD intervention in South Africa. Caregivers reported a preference for an affordable, in-home, individualized early ASD intervention, where they have an active voice in shaping treatment goals. Distrust of community-based nurses and health workers to deliver an early ASD intervention and challenges associated with ASD-based stigma were two unanticipated findings from this data set. Implications for practice and further research are discussed.

Background: Early detection and early intervention for autism spectrum disorder (ASD) is critical because it can reduce the severity of core ASD symptoms, and result in significant long-term improvements in language acquisition, social skills, cognitive abilities, and adaptive behaviors. Involving caregivers in the delivery of early ASD intervention is becoming increasingly important, particularly in low-resource settings, due to limited access to specialist ASD services. Currently, there is no published research on early ASD intervention in South Africa or sub-Saharan Africa (SSA). In addition, there are no published descriptions of caregiver-child joint activity routines, in which early intervention techniques can be embedded, or perceptions of the acceptability of a caregiver coaching approach.

Study Aims: This study aimed to elicit qualitative descriptions of caregiver-child joint activity routines in order to understand how the Early Start Denver Model (ESDM), an evidence-based early ASD intervention, could fit in a low resource South African setting. It also aimed to gauge the acceptability of a caregiver coaching intervention from South African caregivers of young children with ASD who received two taster sessions of caregiver coaching.

Methods: Participants were recruited from the Western Cape Education Department autism waiting list through convenience sampling. Four focus group discussions were conducted with 22 caregivers of young children with ASD, which gathered data on caregiver-child joint activity routines. Four additional families were recruited to participate in two caregiver coaching sessions each. Four in-depth interviews were subsequently conducted with the six caregivers from these families, which gathered data on joint activity routines and acceptability of a caregiver coaching intervention. Data were analyzed through a qualitative content analysis approach, which used a combination of inductive and deductive methods to determine the salient themes and subthemes within the data.

Results: Caregiver descriptions of joint activity routines aligned with ESDM themes of object-based play, sensory social routines, and family routines. In object-based play caregivers reported engaging in turn-taking with their children, teaching skills across developmental domains, embracing child-directed activities, and managing challenges related to play in resource limited settings. In sensory social routines, caregivers described physical play, an awareness of the child’s affect and engagement, increased child expressive communication, and willingness of the child to engage with different play partners. In family routines, caregivers reported child participation in meals and bath time. Caregivers reported that a caregiver coaching approach was acceptable and that they had acquired a variety of skills, including strategies to enhance their child’s social communication. Caregivers preferred receiving coaching in their homes as opposed to in a clinic setting; however, limitations in physical space and financial resources were important considerations.

Conclusion: Training caregiver coaches and non-specialist workers narrows the treatment gap by providing access to children in need of early ASD intervention. This is essential, because of the scarcity of psychologists and psychiatrists working in mental health in low and middle-income countries (LMIC). Descriptions from South African caregivers of caregiver-child joint activity routines and acceptability of the caregiver coaching approach contextualize the caregiver coaching intervention. These data will inform the adaptation and piloting of an early ASD intervention within a low-resource South African setting.

Abstract

Background: Autism spectrum disorder (ASD), a lifelong neurodevelopmental disorder, is recognized by the World Health Organization as a growing global public health concern (World Health Organization, 2013) and may represent some of the greatest burden of disease in children and adolescents. Although currently there is no known cure for ASD, different levels of recovery are still observed in patients. Early detection and intervention with evidence-based treatment models such as the Early Start Denver Model (ESDM) can improve intellectual ability and adaptive behaviors, and decrease symptom severity and challenging behaviors (Dawson et al, 2010; Rogers et al, 2012; Estes et al., 2015). In addition, early intervention with models such as ESDM can decrease long term costs associated with special education services, sheltered employment and supported living (Cidav et al., 2017). In South Africa a small start has been made on caregiver coaching early autism intervention, where caregivers are taught strategies to enhance their child’s social communication attempts (Franz et al., 2017; Guler et al., 2017). But important question remains as to whether non-specialists can deliver an early autism intervention at fidelity and in doing so impact child social communication and social engagement. Fidelity of intervention delivery is the degree to which programs are implemented as intended by program developers and is important because it is a potential moderator of the effect of the intervention on targeted health outcomes (Carroll et al., 2007; Brownson, Colditz, & Proctor, 2012).

Study Aims: The long-term goal of the study is to advance our understanding of the efficacy of caregiver coaching early autism interventions delivered by non-specialists in low resource settings. The overall aims of this South African study are tracking changes in fidelity of caregiver and non-specialist intervention implementation measured using established ESDM fidelity scales of (a) caregiver implementation of ESDM, and (b) non-specialist caregiver

I

coaching techniques during 12 weeks of 1 hour per week P-ESDM coaching in 6 caregiver-child dyads.

Method: The overall study design is a hybrid type 1 effectiveness design. There are twelve 60-minute sessions in total, one hour per week, and all sessions will be video recorded. Each session of non-specialist coaching and caregiver child interaction will be coded at each of the 12 sessions for fidelity of caregiver implementation of ESDM strategies and coaching skills. The data analysis process aims to track changes in the fidelity of caregiver implementation of ESDM and the fidelity of non-specialist caregiver coaching techniques during each of the 12 week of 1 hour per week P-ESDM coaching in 2 caregiver-child dyads. The display fidelity scores visually across session time points, a similar approach used by Vismara (Vismara, Colombi, & Rogers, 2009). In addition, modifications are made to the original plan to adapt local situations to make the intervention more fit to local settings and such modifications are documented using Wiltsey-Stirman framework.

Results: The adaptation process is documented by the Wiltsey-Stirman framework by five categories of modifications on who made the adaptations, what is modified, level of delivery, context of modification and the nature of modification. The fidelity score for each caregiver and coach fidelity rating items are listed and the average fidelity scores for all intervention sessions are also calculated. The worst performing rating items on Caregiver Fidelity Scale are ABC format, joint activity structure and elaboration, quality of dyadic engagement, instructional techniques and application. The worst performing rating items on Coaching Fidelity Scale are greeting and check-in, conversational and reciprocal, reflective, coaching activity 2 and collaborative. There is no significant increasing or decreasing trend of caregiver and coach performances based on average fidelity scores across twelve sessions and

II

there are no strong correlation observed between coaching fidelity scores and caregiver fidelity scores.

Conclusion: Training non-specialists and including them as a part of ASD treatment can help to reduce the resources gap by providing accessible and affordable early ASD intervention in lower-resourced settings. Culturally-sensitive adaptations made to the original intervention program are also needed to make the treatment reach its full capacity in a multi-cultural and multi-lingual community like South Africa. There are only two pairs of caregiver, child and non- specialist dyads participated in this pre-pilot study and such lack of sufficient data serves as a major limitation of this study. In subsequent researches, more caregivers and non-specialists shall participate in the study to help with building more systematic adaptation process and generalize the process of reaching intervention fidelity in lower-resourced settings like South Africa. And these types of interventions have the potential to be scaled up in community settings globally and begin to address the needs of young children and families impacted by autism.

Background: Autism spectrum disorder (ASD) is a major public health challenge worldwide. Early intensive intervention services have been shown to reduce core ASD symptomatology, but there are many barriers to implementing these services in low resource settings. Training caregivers to deliver intensive early ASD intervention may help to overcome many of the implementation barriers, but there is limited research about the feasibility of delivering a caregiver-mediated early ASD intervention in low resource settings and the compatibility of such interventions with existing platforms of care. Study Aims: This study explored key stakeholder perspectives on the feasibility of implementing early ASD intervention services in the Western Cape Province of South Africa. Methods: Eight in-depth interviews with District and Provincial representatives from the Department of Health, the Department of Education, the Department of Social Development, and two non-governmental organizations were conducted. Results: Stakeholders identified 20 current policies relevant to ASD in South Africa, future directions for ASD policy, and perceived barriers to ASD early intervention services. All participants reported a strong desire for early intervention services and identified key potential facilitators to early intervention. Conclusion: Caregiver mediated early ASD intervention may address barriers to ASD services in the Western. This study identified perceived barriers to such interventions as well as facilitators to delivering a caregiver mediated intervention. Adaptions of caregiver-mediated early ASD interventions in the Western Cape must be affordable, simplified to be delivered by paraprofessionals, and adapted to include local cultural components such as language.