Exploring Diagnosis: Healthcare Professionals' Diagnostic Decision-Making, 2017-2018

Hayes, Jennie (2021). Exploring Diagnosis: Healthcare Professionals' Diagnostic Decision-Making, 2017-2018. [Data Collection]. Colchester, Essex: UK Data Service. 10.5255/UKDA-SN-855227

This project explores adults' and clinicians’ experiences of the utility and consequences of diagnostic categorisation. Autism diagnosis is particularly relevant because the label is increasingly applied, the diagnosis has clear costs and benefits, and its application is frequently contested. It is important to ask why, if, and how, diagnosis is of benefit.

The outputs of the Exploring Diagnosis project are: a series of academic articles, two books, one report for clinicians, three short films exploring the themes of Diagnosis, Neurodiversity and Art and a short animation about autism assessment.

Datasets included: Interviews with autistic adults (IWAA); Pupil’s attitudes to Autistic and ADHD peer (PAAAP); and Healthcare Professionals' diagnostic decision-making: observational and interview data (HCPDD).

Data description (abstract)

Exploring Diagnosis is a research project based at the University of Exeter, focussing on the role that diagnosis plays in individual and professional understandings of health and illness using autism spectrum disorder diagnosis as a case study. We examined how healthcare professionals (HCPs) diagnose autism in practice by observing post-assessment meetings in specialist autism assessment teams. These meetings (N=18) were followed up by 16 interviews with HCPs involved in the observed team meetings.

Data creators:

Creator Name	Affiliation	ORCID (as URL)
Hayes Jennie	University of Exeter	https://orcid.org/0000-0002-5506-797X

Sponsors:

Wellcome Trust

Grant reference:

Wellcome Trust [108676/Z/15/Z]

Topic classification:

Health
Society and culture

Keywords:

AUTISM SPECTRUM DISORDERS, MEDICAL DIAGNOSIS, HEALTH PROFESSIONALS, SOCIOLOGY

Project title:

Exploring Diagnosis: Autism and Neurodiversity

Grant holders:

Dr Ginny Russell

Project dates:

From	To
1 October 2015	1 October 2020

Date published:

13 Oct 2021 09:10

Last modified:

13 Oct 2021 09:11

Coverage and Methodology

Collection period:

Date from:	Date to:
2017	2018

Geographical area:

England

Country:

United Kingdom

Data collection method:

We purposively sampled to recruit teams who specialised in autism assessment. All teams were located in England. Two teams specialised in adult assessment; two in children and young people’s assessment. All sites were NHS providers. Written informed consent was obtained from all participants.

Assessment team meetings: 18 autism assessment team meetings were observed, audio-recorded and transcribed. The number of cases discussed at each meeting varied from 1 to 9, and in total the observations provided data related to 88 cases and documented over 19 hours of meeting time. Patients and families were not present at any meeting.

Interviews: Follow up discussions with HCPs explored the trajectory of particular cases raised in assessment team meetings and elicited HCPs’ perspectives on decision-making. 16 HCPs involved in team meetings observed by the researcher were interviewed. HCPs were asked about the social, psychological and systemic/institutional influences that they considered relevant to their diagnostic decisions. A semi-structured approach was used.

Observation unit:

Individual, Group

Kind of data:

Text

Type of data:

Qualitative and mixed methods data

Resource language:

English

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