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Parental experience of an early developmental surveillance programme for autism within Australian general practice: a qualitative study.
Eapen, Valsamma; Winata, Teresa; Gilbert, Melissa; Nair, Radhika; Khan, Feroza; Lucien, Abbie; Islam, Raisa; Masi, Anne; Lam-Cassettari, Christa; Mendoza Diaz, Antonio; Dissanayake, Cheryl; Karlov, Lisa; Descallar, Joseph; Eastwood, John; Hasan, Iqbal; Jalaludin, Bin; Kohlhoff, Jane; Liaw, Siaw-Teng; Lingam, Raghu; Ong, Natalie; Tam, Chun Wah Michael; Woolfenden, Susan; Barbaro, Josephine.
  • Eapen V; Faculty of Medicine, Discipline of Psychiatry and Mental Health, UNSW, Sydney, New South Wales, Australia v.eapen@unsw.edu.au.
  • Winata T; Academic Unit of Infant, Child and Adolescent Psychiatry, South Western Sydney Local Health District, Liverpool, New South Wales, Australia.
  • Gilbert M; Olga Tennison Autism Research Centre, School of Psychology and Public Health, La Trobe University, Melbourne, Victoria, Australia.
  • Nair R; Ingham Institute for Applied Medical Research, Liverpool, New South Wales, Australia.
  • Khan F; Faculty of Medicine, Discipline of Psychiatry and Mental Health, UNSW, Sydney, New South Wales, Australia.
  • Lucien A; Academic Unit of Infant, Child and Adolescent Psychiatry, South Western Sydney Local Health District, Liverpool, New South Wales, Australia.
  • Islam R; Ingham Institute for Applied Medical Research, Liverpool, New South Wales, Australia.
  • Masi A; Olga Tennison Autism Research Centre, School of Psychology and Public Health, La Trobe University, Melbourne, Victoria, Australia.
  • Lam-Cassettari C; Cooperative Research Centre for Living with Autism, The University of Queensland, Saint Lucia, Queensland, Australia.
  • Mendoza Diaz A; Olga Tennison Autism Research Centre, School of Psychology and Public Health, La Trobe University, Melbourne, Victoria, Australia.
  • Dissanayake C; Cooperative Research Centre for Living with Autism, The University of Queensland, Saint Lucia, Queensland, Australia.
  • Karlov L; Faculty of Medicine, Discipline of Psychiatry and Mental Health, UNSW, Sydney, New South Wales, Australia.
  • Descallar J; Faculty of Medicine, Discipline of Psychiatry and Mental Health, UNSW, Sydney, New South Wales, Australia.
  • Eastwood J; Faculty of Medicine, Discipline of Psychiatry and Mental Health, UNSW, Sydney, New South Wales, Australia.
  • Hasan I; Faculty of Medicine, Discipline of Psychiatry and Mental Health, UNSW, Sydney, New South Wales, Australia.
  • Jalaludin B; Olga Tennison Autism Research Centre, School of Psychology and Public Health, La Trobe University, Melbourne, Victoria, Australia.
  • Kohlhoff J; Faculty of Medicine, Discipline of Psychiatry and Mental Health, UNSW, Sydney, New South Wales, Australia.
  • Liaw ST; Academic Unit of Infant, Child and Adolescent Psychiatry, South Western Sydney Local Health District, Liverpool, New South Wales, Australia.
  • Lingam R; Faculty of Medicine, Discipline of Psychiatry and Mental Health, UNSW, Sydney, New South Wales, Australia.
  • Ong N; Academic Unit of Infant, Child and Adolescent Psychiatry, South Western Sydney Local Health District, Liverpool, New South Wales, Australia.
  • Tam CWM; Ingham Institute for Applied Medical Research, Liverpool, New South Wales, Australia.
  • Woolfenden S; Olga Tennison Autism Research Centre, School of Psychology and Public Health, La Trobe University, Melbourne, Victoria, Australia.
  • Barbaro J; Cooperative Research Centre for Living with Autism (Autism CRC), The University of Queensland, Saint Lucia, Queensland, Australia.
BMJ Open ; 12(11): e064375, 2022 11 28.
Article in English | MEDLINE | ID: covidwho-2137766
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).
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Keywords

Full text: Available Collection: International databases Database: MEDLINE Main subject: Autistic Disorder / General Practice Type of study: Diagnostic study / Experimental Studies / Observational study / Prognostic study / Qualitative research / Randomized controlled trials Topics: Long Covid Limits: Child / Humans Country/Region as subject: Oceania Language: English Journal: BMJ Open Year: 2022 Document Type: Article Affiliation country: Bmjopen-2022-064375

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Full text: Available Collection: International databases Database: MEDLINE Main subject: Autistic Disorder / General Practice Type of study: Diagnostic study / Experimental Studies / Observational study / Prognostic study / Qualitative research / Randomized controlled trials Topics: Long Covid Limits: Child / Humans Country/Region as subject: Oceania Language: English Journal: BMJ Open Year: 2022 Document Type: Article Affiliation country: Bmjopen-2022-064375