Parental experience of an early developmental surveillance programme for autism within Australian general practice: a qualitative study.

OBJECTIVES: Implementing support and services early in the life course has been shown to promote positive developmental outcomes for children at high likelihood of developmental conditions including autism. This study examined parents'/caregivers' experiences and perceptions about a digital developmental surveillance pathway for autism, the autism surveillance pathway (ASP), and usual care, the surveillance as usual (SaU) pathway, in the primary healthcare general practice setting. DESIGN: This qualitative study involves using a convenience selection process of the full sample of parents/caregivers that participated in the main programme, 'General Practice Surveillance for Autism', a cluster-randomised controlled trial study. All interviews were audio-recorded, transcribed and coded using NVivo V.12 software. An inductive thematic interpretive approach was adopted and data were analysed thematically. PARTICIPANTS: Twelve parents/caregivers of children with or without a developmental condition/autism (who participated in the main programme) in South Western Sydney and Melbourne were interviewed. SETTINGS: All interviews were completed over the phone. RESULTS: There were seven major themes and 20 subthemes that included positive experiences, such as pre-existing patient-doctor relationships and their perceptions on the importance of knowing and accessing early support/services. Barriers or challenges experienced while using the SaU pathway included long waiting periods, poor communication and lack of action plans, complexity associated with navigating the healthcare system and lack of understanding by general practitioners (GPs). Common suggestions for improvement included greater awareness/education for parents/carers and the availability of accessible resources on child development for parents/caregivers. CONCLUSION: The findings support the use of digital screening tools for developmental surveillance, including for autism, using opportunistic contacts in the general practice setting. TRIAL REGISTRATION NUMBER: ANZCTR (ACTRN12619001200178).

Distress Levels of Parents of Children with Neurodevelopmental Disorders during the COVID-19 Pandemic: A Comparison between Italy and Australia.

Parents of children with a neurodevelopmental disorder (NDD) report higher levels of distress compared to those of typically developing children. Distress levels may be heightened by the restrictions associated with the COVID-19 pandemic. However, it is unclear whether distress levels of parents varied by the diagnosis of neurodevelopmental disorder in children during the COVID-19 pandemic. This study aims to investigate whether parental distress was influenced by the type of NDD. Participants were from Australia (N = 196) and Italy (N = 200); the parents of children aged 3-18 were invited to complete an online self-reported survey which included the 6-item Kessler Psychological Distress Scale (K6) to determine parental distress. The results show that intellectual or learning disorder (ILD) is a major contributor to parental distress compared to other NDDs in both Australia and Italy. Moreover, the worsening of symptomatic changes in children with NDDs was significantly associated with parental distress. The differences between the two countries in terms of the pandemic impact, however, were not statistically significant. The results suggest that intervention strategies need to be tailored for individual clinical information and factor in the society's stringency level of anti-contagion policies to improve parental wellbeing.

Impact of the COVID-19 pandemic on the well-being of children with neurodevelopmental disabilities and their parents.

AIMS: To examine the impact of COVID-19 pandemic on child mental health and socio-emotional and physical well-being (including sleep, diet, exercise, use of electronic media; care giver perceptions of symptoms of child neurodevelopmental disability [NDD] and comorbidities), and care giver mental health and well-being, social support and service use. METHODS: An online cross-sectional self-report survey was distributed via disability service providers and support groups. Care givers of children aged 2-17 years with a NDD were invited to respond to questions on child symptom severity and well-being, parent well-being and service access and satisfaction. RESULTS: Overall, 302 care givers (94.7% female) completed the survey. Average child age was 9.7 years and 66.9% were male. Worsening of any child NDD or comorbid mental health symptom was reported by 64.5% of respondents and 76.9% reported child health and well-being was impacted by COVID-19. Children were viewing more television and digital media (81.6%), exercising less (68.0%), experiencing reduced sleep quality (43.6%) and had a poorer diet (32.4%). Almost one fifth (18.8%) of families reported an increase in the dosage of medication administered to their child. Parents reported COVID-19 had impacted their own well-being (76.1%). Over half of respondents were not satisfied with services received during COVID-19 (54.8%) and just 30% reported that telehealth works well for their child. CONCLUSION: Targeted interventions are required to address worsening child neurodevelopmental disability, mental health symptoms and poor diet, sleep and exercise patterns. Improved access to telehealth services is indicated, as is further research on barriers and enablers of effective telehealth services.