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

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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.,..., & Barbaro, J. (2022). Parental experience of an early developmental surveillance programme for autism within Australian general practice: a qualitative study. BMJ Open, 12(11), e064375. https://doi.org/10.1136/bmjopen-2022-064375

Publication date: 1 Nov 2022 Added to AutiHub: 7 Sep 2026 Type: Article Article language: English
Publisher source (DOI) Full text OpenAlex source

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Authors

Publication authors
23
Publication authors identified as autistic
1 / 23 (4.3%)
  1. Valsamma Eapen
  2. Teresa Winata
  3. Melissa Gilbert
  4. Radhika Nair
  5. Feroza Khan
  6. Abbie Lucien
  7. Raisa Islam
  8. Anne Masi
  1. Christa Lam-Cassettari
  2. Antonio Mendoza Diaz
  3. Cheryl Dissanayake
  4. Lisa Karlov
  5. Joseph Descallar
  6. John Eastwood
  7. Iqbal Hasan
  8. Bin Jalaludin
  1. Jane Kohlhoff
  2. S. T. Liaw
  3. Raghu Lingam
  4. Natalie Ong
  5. Chun Wah Michael Tam
  6. Sue Woolfenden
  7. Josephine Barbaro *

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).

Bibliography cited by this reference

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Cited bibliography overview

These indicators describe the bibliography cited by this publication. An author name is counted each time it appears in one cited reference, so the same person can be counted more than once. Names not yet linked to an author already present in AutiHub are treated as unknown, not as non-autistic. Last computed: 12 Sep 2026 07:09.

Cited references
57
With a DOI
39
Without a DOI, from raw bibliography text
18
2 / 57 (3.5%) cited references include at least one author identified as autistic.
References with data to complete
18 / 57 (31.6%)
References with detected author names
39 / 57 (68.4%)
Without detected author names
18
Without a structured title
17
Without a stable identifier
17
References with raw author names still to review
17
References with external metadata lookup issues
0
These indicators apply to cited references displayed on this page, after technical duplicates have been merged. A reference without a DOI can still support author statistics when a title and author names are available.
Author names detected in the cited bibliography
319
From DOI or external metadata
319
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
26
119 / 319 (37.3%) names are linked to an author already present in AutiHub. 200 / 319 (62.7%) names are not yet linked.
Names linked to a person identified as autistic
2 / 319 (0.6%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 2 / 119 (1.7%). Distinct people identified as autistic: 1 / 213 (0.5%).
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