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).

Impact of the COVID-19 Pandemic on Family Wellbeing in the Context of Neurodevelopmental Disorders.

OBJECTIVE: The primary aim was to assess both the type and degree of impact of the COVID-19 pandemic on child and family wellbeing in a cohort with neurodevelopmental disorders. DESIGN: This was a single time-point observational study utilizing a combination of surveys and standardized measures, which were administered to parents by researchers by telephone. SETTING: The Child and Adolescent Neuropsychiatric Clinic of the Department of Clinical and Experimental Medicine, Catania University, Italy. PARTICIPANTS: In total, 200 caregivers completed the questionnaires on behalf of themselves and their child. They were predominantly mothers (88.00%) and primary caregivers (93.50%), with a mean age of 42.84 years (sd = 7.13). PRIMARY AND SECONDARY OUTCOMES MEASURES: A questionnaire featured in a previous study was used to assess the impact of COVID-19 on general wellbeing, types of support, family health, home-based learning, and child behaviors. Children's diagnoses were recorded. Caregivers provided information about physical, mental, financial, and vocational wellbeing, and completed several standardised measures of mental health and well-being: the Kessler Psychological Distress Scale - K6; the General Anxiety Disorder Scale - GAD-2; and the WHO Well-being Scale - WHO-5. RESULTS: Overall, 58.50% of respondents agreed somewhat or strongly that their child's overall health and wellbeing had been impacted by the pandemic, while 47.74% felt that their own wellbeing as parents had been affected. Whilst home-based learning and disruption to services for children were noted as being significant, child wellbeing appeared to not be correlated with these but rather to restrictions, home isolation, and disruption to routine. CONCLUSION: Children with neurocognitive disorders and their families have been substantially impacted by the COVID-19 pandemic. It is expected that targeted resources and support services will be required in response to this increase in need.