Morse_whole_thesis.pdf (7.81 MB)
Implementation of developmental surveillance for autism using the Social attention and communication surveillance-revised (SACS-R) assessment tool for young children in Tasmania, Australia
thesisposted on 2023-05-28, 01:05 authored by Morse, AJ
Autism spectrum disorder (autism) is a neurodevelopmental condition that affects how a person experiences the world and relates to others. The prevalence of autism ranges between 1-3% of population. Through the early identification of children with autism, access to Early Intervention (EI) services may be possible and improved outcomes achieved. Tasmanian children were not being identified as early as possible, which meant they were at increased risk of avoidable developmental delays and prolonged access to intervention services. Early detection includes screening and surveillance then, if warranted, follow up diagnostic assessment, ideally conducted by a multi-disciplinary team. The Social Attention and Communication Surveillance-Revised (SACS-R) is an autism-specific surveillance tool that detects autism and other developmental delays. It is designed to assist health care professionals to identify behaviours in young children (11-30 months of age) that are indicative of high likelihood‚ÄövÑvp of autism. The SACS-R tool was introduced into the Tasmanian Health Service (THS) in 2016 as part of a program to improve early identification of autism in this state. The intended outcome of any innovation is positive change. However, there are often significant gaps between research and practice that result in delays to the implementation of change in practice settings. Introduction of the SACS-R tool in Tasmania required a significant service change involving the Child Health and Parenting Service (CHaPS) nurses (a statewide child assessment and support service), the St Giles Developmental Assessment Team (DAT) and other medical, educational, community and allied health stakeholders. The aim of this study was to explore the enablers and barriers to the successful statewide implementation of the SACS-R early childhood surveillance program. Implementation Science (IS) principles underpin this study. IS seeks to understand and narrow the gap between the discovery of new knowledge and its application in health care settings. Added to this, a Design Thinking (DT) approach was used to place the end-users at the centre of the research, in this case, the parents and the children undergoing early autism surveillance. A mixed methods research design was used. Parents, CHaPS nurses and management staff, policy groups, allied health professionals, educators, and doctors (paediatricians, GPs and psychiatrists) were recruited to the study. Data was collected through online questionnaires and surveys (n=113) and semi-structured interviews with participants (n=91). The interviews were audio-recorded, transcribed, and thematically analysed. Quantitative data was analysed using SPSS software. Following initial analysis, quantitative and qualitative data sets were converged to identify similarities, divergences and new understandings identified by stakeholder groups. By integrating the findings, the enablers and barriers across personal, practice and policy levels were identified and understanding of the complexities of the whole process emerged. Integration also revealed the implications for successful adoption of the SACS-R into routine clinical practice within the public health system. The key finding is that the SACS-R process was successfully introduced by the CHaPS, including the addition of an 18-month assessment, which meant that young Tasmanian children could be identified as high likelihood for autism, diagnosed, and in theory, able to be supported through access to intervention much earlier than previously possible. Two key enablers were: 1) integration of the tool into the children's appointments with the CHaPS nurses and 2) children being able to access EI services post this initial visit. Two major barriers included 1) a lack of services and 2) insufficient funding. In addition, the use of a pragmatic mixed methodology alongside a DT approach proved to enable a more nuanced understanding of the barriers and enablers from the perspectives of those involved. Further findings indicate that the nurses had greater confidence in the developmental assessment of young children and in identifying and referring those at high likelihood of autism for diagnostic assessment. Following training, the assessment was embedded into routine practice with relative ease. However, concerns associated with inconsistent language use, lengthy wait times, and lack of services for children with autism and/or other developmental delays were identified by stakeholder groups. There was a need for ongoing refreshers, education and support for nurses and other key stakeholders. The study shows that additional pathways need to be established to better support children and parents to access timely services, following referral and post-diagnosis, including EI. Identifying and upskilling other professionals in the delivery of the SACS-R would be highly beneficial, along with more adequate staffing. Further research is needed to enable the problem of long wait times for assessment and diagnosis to be effectively addressed. This study is unique in Australia. It is the first to address the depth of experiences of a broad range of stakeholders across various contexts. While this research is specific to Tasmania, the findings have relevance to other health service jurisdictions. This study will benefit health practitioners, policy makers and the autism community; those who are committed to addressing early neurodevelopmental concerns for the benefit of lifelong positive outcomes.
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