Improving the Journey Before, During and After Diagnosis of a Neurodevelopmental Condition: Suggestions from a Sample of Australian Consumers and Professionals

Abstract

Objectives The current study used a transdiagnostic approach to explore experiences of consumers and professionals on how the process of assessing and diagnosing neurodevelopmental conditions can be improved. Methods Individuals with personal and/or professional experience of this clinical pathway were invited to complete an online survey. A convenience sample of 117 Australian participants provided qualitative data describing how to improve this clinical pathway, including 71 consumers and 53 professionals (seven participants held both roles). Descriptive statistics were used to summarize the characteristics of the participants and two researchers analyzed the qualitative responses using a template approach. Results Participants described a five-stage “journey” spanning before, during and after diagnosis of a neurodevelopmental condition. They progressed through “searching” for an explanation, “waiting” for the diagnostic evaluation, “investigating” the signs and symptoms, “knowing” that their child has a neurodevelopmental condition and “accessing” support. Participants also suggested nine key improvements to this process that were named “awareness” through professional training and empathy, “clearer pathways” through professional checklists and plans, “acceptable timeframes” through reduced local waitlists, “more holistic” through assessment and supports, “more collaboration” through communication with key parties, “stability and consistency” through continuous and coordinated services, “generic community programs” through early needs-based support, “understanding” through meaningful diagnostic disclosure and “addressing their needs” through further targeted supports. Conclusions The findings from this study provide a foundation for future work to improve the diagnostic journey for neurodevelopmental conditions through a collaborative effort between consumers, professionals, researchers and policy makers. These findings highlight the importance of a transdiagnostic and comprehensive clinical pathway that spans the entire journey, where supports are readily available to consumers before, during and after diagnosis. Further research is required to explore the experience of consumers and professionals from more diverse backgrounds, as a limitation of this study was that almost all participants were females and very few identified as belonging to a specific cultural group.

The Well-being and Support Needs of Australian Caregivers of Neurodiverse Children

“…Coaching via telehealth during the waitlist time has been demonstrated to effectively enhance parent’s utilisation of intervention strategies for challenging behaviours for toddlers awaiting diagnosis of autism, which in addition, improves caregivers’ self-efficacy and quality of life (Carey et al, 2021 ; Kunze et al, 2021 ). Once receiving a diagnosis for their child, caregivers from this study responded with confusion and high levels of stress, similar to those identified by Evans et al ( 2022 ). To address the after-effects of a diagnosis, it may be beneficial for caregivers to be offered counselling or linked to support groups to assist with their emotional processing of their child’s diagnosis (Evans et al, 2022 ).…”

“…Once receiving a diagnosis for their child, caregivers from this study responded with confusion and high levels of stress, similar to those identified by Evans et al ( 2022 ). To address the after-effects of a diagnosis, it may be beneficial for caregivers to be offered counselling or linked to support groups to assist with their emotional processing of their child’s diagnosis (Evans et al, 2022 ). In addition, caregivers from this study required more detailed information from health professionals regarding their child’s condition, reason for behaviours, and strategies to best support their child.…”

Access and barriers to supports for children and caregivers attending public child developmental assessment services: Findings from the Sydney child neurodevelopment research registry

“…The most commonly accessed services were medical professionals (pediatricians, child psychiatrists, general practitioners) and speech/language therapists. This aligns with the typical diagnostic journey of many families, where a general practitioner provides referral to a pediatrician for further evaluation (Evans et al, 2022; Stahmer et al, 2019), after which referral may be made to a tertiary service. In contrast, some of the least commonly accessed services were psychological services and behavioral management/skills therapies.…”

Lived experiences of the diagnostic assessment process for fetal alcohol spectrum disorder: A systematic review of qualitative evidence

“…Consistent with research exploring other developmental and behavioral conditions (Donders, 2020;Evans et al, 2022), the reviewed evidence highlighted the benefits of feedback sessions and reports for clarifying the FASD diagnosis and guiding future strategies and supports. Caregivers particularly valued the focus on the individual's strengths along with understanding areas of vulnerability.…”