ObjectivesImplementing 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.DesignThis 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.ParticipantsTwelve 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.SettingsAll interviews were completed over the phone.ResultsThere 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.ConclusionThe findings support the use of digital screening tools for developmental surveillance, including for autism, using opportunistic contacts in the general practice setting.Trial registration numberANZCTR (ACTRN12619001200178).
Background:Significant challenges remain in the early identification of child developmental conditions in the community. Implementing supports 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. As part of a cluster randomised controlled trial, this study seeks to examine and compare the perspectives and experiences of Australian general practitioners (GPs) in relation to a digital developmental surveillance program for autism and usual care pathway, in general practice clinics. Methods:A qualitative research methodology (semi-structured interviews and thematic analysis) was utilised in this study. All GPs from South Western Sydney (NSW) and Melbourne (Victoria) who participated in the main program (“GP Surveillance for Autism”) were invited to the interview. GPs who provided consent were interviewed either over online or in-person meeting. Interviews were audio-recorded, transcribed, and coded using NVivo12 software.Inductive interpretive approach was adopted and data were analysed thematically. Results:Twenty-three GPs across the two sites (NSW: n=11; Victoria: n=12) agreed to be interviewed; data saturation had reached following this number of participants. Inductive thematic coding and analysis yielded nine major themes and highlighted common enablers such as the role of GPs in early identification and intervention, enhanced communication between clinicians/professionals, relationship-building with patients, and having standardised screening tools. Specific facilitators to the feasibility and acceptability of a digital screening program for the early identification of developmental conditions, including the early signs of autism, and encouraging research and education for GPs. However, several practical and socioeconomic barriers were identified, in addition to limited knowledge and uptake of child developmental screening tools as well as COVID-19 lockdown impacts. Common and specific recommendations involve supporting GPs in developmental/paediatrics training, streamlined screening process, and funding and resources in the primary healthcare services. Conclusions: The study highlighted the need for practice and policy changes, including further training of GPs alongside sufficient time to complete developmental checks and appropriate financial remuneration through a Medicare billing item. Further research is needed on implementation and scale up of a national surveillance program for early identification of developmental conditions including autism.
ObjectiveTo elicit patient safety issues pertaining to children and young people with intellectual disability in hospital from healthcare staff perspectives. This follows a previous paper of parent interviews of patient safety experiences of their child in hospital.DesignQualitative study.SettingWe conducted semi-structured interviews and focus groups of staff of tertiary children’s hospitals based on the domains of the Patient Safety Education Framework and using the framework methodology for data analysis.ParticipantsThere were 29 female and 7 male staff aged between 27 and 70 years from a range of departments and specialties including ancillary staff.InterventionQuestions based on the patient safety framework were developed from consultation with parents, researchers and clinicians exploring staff views and experiences of safety and quality care of these children in hospital. During April 2021 to May 2022, 22 interviews and 3 focus groups were conducted of staff who have had experience caring for children and young people with intellectual disability in the last 12 months in the hospital.ResultsKey themes elicited includeDefinition of Safety, Need to consider additional vulnerabilities of children and young people with intellectual disability in hospital, Communication is key to safe care, Parent and family perspectives on safe care, Management challenges compromising safety and Service system gaps in preventing, identifying and managing risk.ConclusionsStaff need to consider additional vulnerabilities, mitigate negative attitudes and biases towards better engagement and relationships with parents, children and young people of this population. Improvement of current systems that prevent the identification, prevention and management of risk and safety issues for this population need to be undertaken. Future developments include combining data from parent interviews, academic and grey literature in developing safety competencies in this population for training and education of staff across the health system.
Background Significant challenges remain in the early identification of child developmental disabilities in the community. Implementing supports and services early in the life course has been shown to promote positive developmental outcomes for children at high likelihood of developmental disabilities, including autism. As part of a cluster randomised controlled trial, this study seeks to examine and compare the perspectives and experiences of Australian general practitioners (GPs) in relation to a digital developmental surveillance program for autism and usual care pathway, in general practice clinics. Methods A qualitative research methodology with semi-structured interviews and thematic inductive analysis underpinned by grounded theory was utilised. All GPs from South Western Sydney (NSW) and Melbourne (Victoria) who participated in the main program (“GP Surveillance for Autism”) were invited to the interview. GPs who provided consent were interviewed either over online or in-person meeting. Interviews were audio-recorded, transcribed, and coded using NVivo12 software. Inductive interpretive approach was adopted and data were analysed thematically. Results Twenty-three GPs across the two sites (NSW: n = 11; Victoria: n = 12) agreed to be interviewed; data saturation had reached following this number of participants. Inductive thematic coding and analysis yielded eight major themes and highlighted common enablers such as the role of GPs in early identification and subsequent supports, enhanced communication between clinicians/professionals, relationship-building with patients, and having standardised screening tools. Specific facilitators to the feasibility and acceptability of a digital screening program for the early identification of developmental disabilities, including the early signs of autism, and encouraging research and education for GPs. However, several practical and socioeconomic barriers were identified, in addition to limited knowledge and uptake of child developmental screening tools as well as COVID-19 lockdown impacts. Common and specific recommendations involve supporting GPs in developmental/paediatrics training, streamlined screening process, and funding and resources in the primary healthcare services. Conclusions The study highlighted the need for practice and policy changes, including further training of GPs alongside sufficient time to complete developmental checks and appropriate financial remuneration through a Medicare billing item. Further research is needed on implementation and scale up of a national surveillance program for early identification of developmental disabilities, including autism.
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