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ItemUnderstanding and supporting children and families on the pathway to autism assessmentBernie, Charmaine ( 2021)Delays accessing assessments for concerns relating to autism, a neurodevelopmental disorder affecting between one and four out of every 100 children, have been identified globally as an issue of concern. Even in developed countries where access to healthcare may be of a comparatively high standard and individuals with neurodevelopmental disorders have received care for decades, the time between initial identification of concerns and autism diagnosis can be in excess of two years. Assessment delays can have a negative impact on child, parent, and family outcomes, including long-term health and well-being. This is particularly the case when delays to diagnosis and targeted interventions occur during periods of optimal neuroplasticity. Despite efforts to reduce wait time across healthcare systems worldwide, waiting lists continue to cause delays for those seeking diagnostic classification and access to needed services. This experience is a common issue for parents of young children with autism-related concerns. In Australia, wait times for assessment for children with autism-related concerns are highly variable, depending on a service’s geographical location, service funding, models of service delivery, and a family’s own resources. These factors can affect a family’s pursuit of either public or private health care, which in turn can influence pathway length and associated experiences. While both pathways for assessment are available in Australia, accessing a private evaluation is not an option for many families due to financial constraints. In this scenario, children can wait between three months and two years for a publicly-funded autism assessment despite recently published national guidelines recommending that assessment commence within three months of referral. In the context of ongoing extensive waits for autism assessment, work is needed to understand how individuals and families can be supported during their waiting periods. For parents of children awaiting an autism assessment, as well as delaying needed care, the waiting time is a source of stress and uncertainty. Stress can be exacerbated when there is a large amount of conflicting information. Varying healthcare provider responses about a child’s presenting concerns, optimal services available, unproven interventions and the need for early life interventions that are difficult to access are also factors contributing to the family’s stress. Prospective research on the issues relating to the pre-diagnostic phase, particularly following identification and referral, has been limited to date. So too have investigations regarding best support for children and their families waiting for autism assessment. This thesis has aimed to address this research gap, by drawing on theory, data, and original research, in the context of the author’s clinical experience, to further understand the issues and support required for young children and their families waiting for an autism assessment. This work considers the appropriateness and feasibility of a brief function-focused intervention while waiting, as one solution worthy of further exploration. The motivation of this thesis emerged from clinical experience as an autism service coordinator and occupational therapist; supporting families as they attempt to manage the challenging, often lengthy period between referral and assessment. The current thesis is comprised of three original studies. Underpinned by well-established models and theories in clinical research, in addition to child and family health, well-being, function and participation, these investigations were embedded in a family-centred practice framework. The influence of family on child health and well-being has been at the forefront of each of the studies undertaken that contribute to this body of work. The studies were supported by the understanding that for young children in particular, the family context is a key consideration in overall health and well-being outcomes. Other social and environmental influences have also been considered throughout this thesis. This body of work acknowledges health service environments and their impact on service access, which can in turn affect the health and well-being of children and families. The influence of service structures on early access pathways have been subsequently considered throughout this thesis. The first of three original studies involved an analysis of existing clinical data, to explore local pathways to autism assessment for families of young children referred in Victoria. The second study explored existing interventions that have supported families in the pre-diagnostic stage, via a systematic review and meta-analysis. Finally, a pilot and feasibility study were undertaken, exploring “Coaching While Waiting” for families of children recently referred for autism assessment. Study results provide a basis upon which to conduct a future randomised control trial exploring the efficacy of the approach for children and families waiting for autism assessment. Following an in-depth literature review on the pathway to autism assessment, presented in Chapter 2, existing local data about referral and autism assessment was sourced. The aims of the study were threefold. First, to explore demographic and assessment pathway characteristics for children referred to a tertiary hospital in Melbourne for an autism assessment. Second, to understand differences in characteristics between those who proceed to receiving an autism diagnosis as opposed to those that do not. Finally, to assess which demographic and modifiable service-related factors on the pathway to assessment - inclusive of screening questionnaire results - may be predictive of an autism diagnosis. Observational pathway data was examined using bivariate and regression analyses. The findings identified lengthy waiting lists for multidisciplinary team diagnosis and discovered that a substantial minority (36%) of children referred with a query of autism do not go on to receive the diagnosis. Moreover, screening tools administered at triage were found not to be helpful in predicting service needs and diagnosis. The study added value by increasing an understanding of referral and diagnostic pathways in Victoria. It was concluded that alternative approaches were needed to help direct families to appropriate services at the point of triage. A systematic review was completed to investigate applied interventions for families while waiting for their child’s diagnostic assessment. The aims of this study were to explore the nature of interventions implemented and to evaluate the efficacy of parent-directed interventions compared with controls, with regard to improving child, family and service access outcomes whilst a child waits for diagnostic assessment as part of paediatric healthcare. Four controlled studies met the inclusion criteria, and moderate to high risk of bias was found across those included. To the authors’ knowledge, this was the first systematic review to explore parent-directed interventions whilst children wait for diagnostic assessments. Interventions, though variable, may have a positive effect on child, family and service-related outcomes, though more controlled studies with low risk of bias are needed before further efficacy conclusions can be drawn. Further studies should continue to focus on the three outcome areas explored; child, family, and service-related outcomes, in relation to the best intervention methods to support families in this interim period. With long wait times and lack of clarity around the best interventions for children and families whilst waiting, a pilot and feasibility study was undertaken. The study aimed to investigate whether a function-focused approach, inclusive of service navigation support and Occupational Performance Coaching, was acceptable and practical for families in this period. Additionally, the study established preliminary findings to support further efficacy testing in an appropriately-powered randomised control trial. Sixteen participants were recruited in three study arms: usual care, videoconference and face-to-face coaching. The design was feasible with completion rates reaching pre-set targets. Participants in the intervention group demonstrated clinically significant improvement across functional goals set, and improved service access at follow-up. The intervention holds promise as an appropriate approach for families waiting for their child’s autism assessment. Support for children and families while waiting for diagnostic evaluations is a research area requiring further attention. The approach adopted in the Coaching While Waiting trial has the potential to address key issues that are likely to benefit children with emerging support needs and their families, beyond those waiting for autism assessment. A trial exploring intervention effectiveness is planned, with key outcomes linked to whether children and families have timely and improved access to needed services, as well as achieving function-focused goals prior to diagnostic assessment. Such endeavours are critical if improvements in the early care pathway for children with autism and developmental concerns are to be realised, for the short and long-term benefit of children, families and services.