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https://swslhd.intersearch.com.au/swslhdjspui/handle/1/1108| Title: | Parental experience of an early developmental surveillance programme for autism within Australian general practice: A qualitative study |
| Authors: | Eapen, V. Winata, T. Gilbert, M. Nair, R. Khan, F. Lucien, A. Islam, R. Masi, A. Lam-Cassettari, C. Mendoza Diaz, A. Dissanayake, C. Karlov, L. Descallar, J. Eastwood, J. Hasan, I. Jalaludin, B. Kohlhoff, J. Liaw, S. T. Lingam, R. Ong, N. Tam, C. W. M. Woolfenden, S. Barbaro, J. |
| Affiliates: | Faculty of Medicine, Discipline of Psychiatry and Mental Health, UNSW, Sydney, NSW, Australia Academic Unit of Infant, Child and Adolescent Psychiatry, South Western Sydney Local Health District, Liverpool, NSW, Australia Olga Tennison Autism Research Centre, School of Psychology and Public Health, La Trobe University, Melbourne, VIC, Australia Ingham Institute for Applied Medical Research, Liverpool, NSW, Australia Cooperative Research Centre for Living with Autism, The University of Queensland, Saint Lucia, QLD, Australia Cooperative Research Centre for Living with Autism (Autism CRC), The University of Queensland, Saint Lucia, QLD, Australia Faculty of Medicine and Health, School of Medicine, The University of Sydney, Sydney, NSW, Australia Centre for Research, Evidence Management and Surveillance, South Western Sydney Local Health District, Liverpool, NSW, Australia Faculty of Medicine, School of Population Health, UNSW, Sydney, NSW, Australia School of Public Health and Community Medicine, UNSW, Sydney, NSW, Australia Population Child Health Research Group, Faculty of Medicine, School of Women's and Children's Health, UNSW, Sydney, NSW, Australia Children's Hospital Westmead Clinical School, The University of Sydney, Sydney, NSW, Australia Primary and Integrated Care Unit, South Western Sydney Local Health District, Liverpool, NSW, Australia |
| Issue Date: | 2022 |
| Journal: | BMJ Open |
| Abstract: | 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). ? Author(s) (or their employer(s)) 2022. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ. |
| URI: | https://swslhd.intersearch.com.au/swslhdjspui/handle/1/1108 |
| Digital object identifier: | 10.1136/bmjopen-2022-064375 |
| Appears in Collections: | South Western Sydney Local Health District |
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