Parental experience of an early developmental surveillance programme for autism within Australian general practice: a qualitative study
Susan Woolfenden,
Raghu Lingam,
Bin Jalaludin,
Teresa Winata,
Valsamma Eapen,
Siaw-Teng Liaw,
Jane Kohlhoff,
John Eastwood,
Joseph Descallar,
Cheryl Dissanayake,
Anne Masi,
Chun Wah Michael Tam,
Christa Lam-Cassettari,
Lisa Karlov,
Natalie Ong,
Feroza Khan,
Antonio Mendoza Diaz,
Raisa Islam,
Melissa Gilbert,
Radhika Nair,
Abbie Lucien,
Iqbal Hasan,
Josephine Barbaro
Affiliations
Susan Woolfenden
UNSW, Sydney, New South Wales, Australia
Raghu Lingam
UNSW, Sydney, New South Wales, Australia
Bin Jalaludin
10 Centre for Research, Evidence Management and Surveillance, South Western Sydney Local Health District, Liverpool, New South Wales, Australia
Teresa Winata
1 Australian Institute of Health Innovation, Macquarie University, Sydney, New South Wales, Australia
Valsamma Eapen
UNSW, Sydney, New South Wales, Australia
Siaw-Teng Liaw
WHO Collaborating Centre for eHealth, School of Public Health and Community Medicine, University of New South Wales, Sydney, New South Wales, Australia
Jane Kohlhoff
University of New South Wales, Sydney, New South Wales, Australia
John Eastwood
Paediatrics and Child Health, School of Public Health, The University of Sydney, Sydney, New South Wales, Australia
Joseph Descallar
3Ingham Institute for Applied Medical Research, Liverpool, New South Wales, Australia
Cheryl Dissanayake
School of Psychology and Public Health, La Trobe University, Olga Tennison Autism Research Centre, Director & Chair, Melbourne, Victoria, Australia
Anne Masi
School of Psychiatry, Faculty of Medicine, University of New South Wales, Sydney, New South Wales, Australia
Chun Wah Michael Tam
The Primary and Integrated Care Unit, South Western Sydney Local Health District, Liverpool, New South Wales, Australia
Christa Lam-Cassettari
Discipline of Psychiatry and Mental Health, University of New South Wales, Sydney, New South Wales, Australia
Lisa Karlov
University of New South Wales, Sydney, New South Wales, Australia
Natalie Ong
University of New South Wales, Sydney, New South Wales, Australia
Feroza Khan
Academic Unit of Infant, Child and Adolescent Psychiatry, University of New South Wales, Sydney, New South Wales, Australia
Antonio Mendoza Diaz
UNSW, Sydney, New South Wales, Australia
Raisa Islam
Department of Trauma and Orthopaedic Surgery, Princess Alexandra Hospital, Harlow, UK
Melissa Gilbert
3 Olga Tennison Autism Research Centre, School of Psychology and Public Health, La Trobe University, Melbourne, Victoria, Australia
Radhika Nair
3 Olga Tennison Autism Research Centre, School of Psychology and Public Health, La Trobe University, Melbourne, Victoria, Australia
Abbie Lucien
1 Faculty of Medicine, Discipline of Psychiatry and Mental Health, UNSW, Sydney, New South Wales, Australia
Iqbal Hasan
1 Faculty of Medicine, Discipline of Psychiatry and Mental Health, UNSW, Sydney, New South Wales, Australia
Josephine Barbaro
3 Olga Tennison Autism Research Centre, School of Psychology and Public Health, La Trobe University, Melbourne, Victoria, Australia
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).
