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

被引：4

作者：

Eapen, Valsamma ^{[1
,2
,3
,4
]}

Winata, Teresa ^{[1
,2
,4
]}

Gilbert, Melissa ^{[3
,5
]}

Nair, Radhika ^{[3
,5
]}

Khan, Feroza ^{[1
]}

Lucien, Abbie ^{[1
]}

Islam, Raisa ^{[1
]}

Masi, Anne ^{[1
,3
]}

Lam-Cassettari, Christa ^{[1
,2
]}

Diaz, Antonio Mendoza ^{[1
,2
,4
]}

Dissanayake, Cheryl ^{[3
,6
]}

Karlov, Lisa ^{[1
,2
]}

Descallar, Joseph ^{[2
,4
]}

Eastwood, John ^{[4
,7
]}

Hasan, Iqbal ^{[1
]}

Jalaludin, Bin ^{[8
,9
]}

Kohlhoff, Jane ^{[1
]}

Liaw, Siaw-Teng ^{[10
]}

Lingam, Raghu ^{[11
]}

Ong, Natalie ^{[12
]}

Tam, Chun Wah Michael ^{[9
,13
]}

Woolfenden, Susan ^{[11
]}

Barbaro, Josephine ^{[3
,5
]}

机构：

[1] UNSW, Fac Med, Discipline Psychiat & Mental Hlth, Sydney, NSW, Australia

[2] South Western Sydney Local Hlth Dist, Acad Unit Infant Child & Adolescent Psychiat, Liverpool, NSW, Australia

[3] La Trobe Univ, Olga Tennison Autism Res Ctr, Sch Psychol & Publ Hlth, Melbourne, Vic, Australia

[4] Ingham Inst Appl Med Res, Liverpool, NSW, Australia

[5] Univ Queensland, Cooperat Res Ctr Living Autism, St Lucia, Qld, Australia

[6] Univ Queensland, Cooperat Res Ctr Living Autism Autism CRC, St Lucia, Qld, Australia

[7] Univ Sydney, Fac Med & Hlth, Sch Med, Sydney, NSW, Australia

[8] South Western Sydney Local Hlth Dist, Ctr Res Evidence Management & Surveillance, Liverpool, NSW, Australia

[9] UNSW, Fac Med, Sch Populat Hlth, Sydney, NSW, Australia

[10] UNSW, Sch Publ Hlth & Community Med, Sydney, NSW, Australia

[11] UNSW, Fac Med, Sch Womens & Childrens Hlth, Populat Child Hlth Res Grp, Sydney, NSW, Australia

[12] Univ Sydney, Childrens Hosp Westmead Clin Sch, Sydney, NSW, Australia

[13] South Western Sydney Local Hlth Dist, Primary & Integrated Care Unit, Liverpool, NSW, Australia

来源：

BMJ OPEN | 2022年 / 12卷 / 11期

关键词：

PRIMARY CARE; Developmental neurology & neurodisability; QUALITATIVE RESEARCH; Community child health; COVID-19; QUANTITATIVE CHECKLIST; BARRIERS; CHILDREN; CARE;

D O I：

10.1136/bmjopen-2022-064375

中图分类号：

R5 [内科学];

学科分类号：

1002 ; 100201 ;

摘要：

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.

引用

页数：12

共 54 条

[1] The Q-CHAT (Quantitative CHecklist for autism in toddlers): A normally distributed quantitative measure of autistic traits at 18-24 months of age: Preliminary report [J].

Allison, Carrie ;

Baron-Cohen, Simon ;

Wheelwright, Sally ;

Charman, Tony ;

Richler, Jennifer ;

Pasco, Greg ;

Brayne, Carol .

JOURNAL OF AUTISM AND DEVELOPMENTAL DISORDERS, 2008, 38 (08) :1414-1425

[2] Toward Brief "Red Flags" for Autism Screening: The Short Autism Spectrum Quotient and the Short Quantitative Checklist in 1,000 Cases and 3,000 Controls [J].

Allison, Carrie ;

Auyeung, Bonnie ;

Baron-Cohen, Simon .

JOURNAL OF THE AMERICAN ACADEMY OF CHILD AND ADOLESCENT PSYCHIATRY, 2012, 51 (02) :202-212

[3] Stepped care mental health service in Australian primary care: codesign and feasibility study [J].

Anderson, Josephine ;

O'Moore, Kathleen ;

Faraj, Mariam ;

Proudfoot, Judith .

AUSTRALIAN HEALTH REVIEW, 2020, 44 (06) :873-879

[4]

Australian Early Development Census, 2018, Australian early development census national report 2015: A snapshot of early childhood development in Australia

[5]

Australian Government, 2013, NAT DIS INS SCHEM AC

[6] Risk factors for non-participation in a universal developmental surveillance program in a population in Australia [J].

Ayer, Chandra ;

Eapen, Valsamma ;

Overs, Bronwyn ;

Descallar, Joseph ;

Jalaludin, Bin ;

Eastwood, John Graeme ;

Dissanayake, Cheryl ;

Williams, Katrina ;

Murphy, Elisabeth ;

Woolfenden, Susan .

AUSTRALIAN HEALTH REVIEW, 2020, 44 (04) :512-520

[7] The Acceptability and Effectiveness of Web-Based Developmental Surveillance Programs: Rapid Review [J].

Baker, Jess ;

Kohlhoff, Jane ;

Onobrakpor, Se-Inyenede ;

Woolfenden, Sue ;

Smith, Rebecca ;

Knebel, Constanze ;

Eapen, Valsamma .

JMIR MHEALTH AND UHEALTH, 2020, 8 (04)

[8] Diagnostic Accuracy of the Social Attention and Communication Surveillance-Revised With Preschool Tool for Early Autism Detection in Very Young Children [J].

Barbaro, Josephine ;

Sadka, Nancy ;

Gilbert, Melissa ;

Beattie, Erin ;

Li, Xia ;

Ridgway, Lael ;

Lawson, Lauren P. ;

Dissanayake, Cheryl .

JAMA NETWORK OPEN, 2022, 5 (03)

[9] A Multistate Trial of an Early Surveillance Program for Autism Within General Practices in Australia [J].

Barbaro, Josephine ;

Masi, Anne ;

Gilbert, Melissa ;

Nair, Radhika ;

Abdullahi, Ifrah ;

Descallar, Joseph ;

Dissanayake, Cheryl ;

Eastwood, John ;

Hasan, Iqbal ;

Jalaludin, Bin ;

Karlov, Lisa ;

Khan, Feroza ;

Kohlhoff, Jane ;

Liaw, S. T. ;

Lingam, Raghu ;

Mendoza Diaz, Antonio ;

Ong, Natalie ;

Tam, Chun Wah Michael ;

Unwin, Katy ;

Woolfenden, Sue ;

Eapen, Valsamma .

FRONTIERS IN PEDIATRICS, 2021, 9

[10] A Scoping Review of Health Disparities in Autism Spectrum Disorder [J].

Bishop-Fitzpatrick, Lauren ;

Kind, Amy J. H. .

JOURNAL OF AUTISM AND DEVELOPMENTAL DISORDERS, 2017, 47 (11) :3380-3391

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