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‘Our Stories…’: Co-Constructing Digital Storytelling Methodologies for Supporting the Transitions of Autistic Children: Study Protocol Documents and Example Digital Stories, 2021–2022
Creator
Parsons, S, University of Southmpton
Kovshoff, H, University of Southampton
Yuill, N, University of Sussex
Study number / PID
856097 (UKDA)
10.5255/UKDA-SN-856097 (DOI)
Data access
Restricted
Series
Not available
Abstract
The Our Stories project was a methods pilot project co-constructed with different practice-based settings to support different transitions of autistic children, young people and families. Therefore, most of the documents deposited are methodological protocols for informed consent, video content creation, evaluation, and analysis. There were 4 pilot projects in total, each with different protocol documents to suit the context and stakeholders as well as institutional requirements for ethics review at the universities of Southampton and Sussex. We also share example video outputs from the project that we have permission to make publicly available (the URLs to these outputs are also included in the summary Readme document) and include: 10 'I am' Digital Stories; 2 'How I feel' Digital Stories; and 3 'We are' Family Digital Stories.The long-term social, educational, and employment outcomes for autistic people remain poor. There is a longstanding gap between research and practice such that these poor outcomes are not being adequately addressed despite over 40 years of research. This has led to calls for research to develop more participatory methods that are inclusive of autistic people such that their needs and strengths can be identified, explored, and understood in more effective ways that make a difference to everyday life. However, many approaches to participation remain tokenistic and partial, with many voices and experiences excluded and under-explored. Such voices include those with complex needs who may not communicate via speech. Also excluded are the voices of families, and practitioners across education, health, and social care. Lived experiences and professional knowledge are sources of evidence that are regularly overlooked and undervalued in research in favour of scientific evidence and formalised knowledge. We argue that research, and the methods used therein, can only make an impact on practice if there is a genuine commitment to gathering and...
Terminology used is generally based on DDI controlled vocabularies: Time Method, Analysis Unit, Sampling Procedure and Mode of Collection, available at CESSDA Vocabulary Service.
Methodology
Data collection period
15/02/2021 - 30/09/2022
Country
United Kingdom
Time dimension
Not available
Analysis unit
Individual
Organization
Family
Universe
Not available
Sampling procedure
Not available
Kind of data
Text
Video
Data collection mode
This project used co-constructed, participatory methods with individuals, families, and settings to create Digital Stories and Virtual Tours to support a range of different transitions. Participants included: autistic children, their families and teachers; medical students; and employees at community settings supporting young people with work experience. Feedback was gained from participants via interviews, online surveys, and focus groups. The protocols for these evaluation processes are included in the data deposit.
Funding information
Grant number
ES/V005286/1
Access
Publisher
UK Data Service
Publication year
2023
Terms of data access
The Data Collection is available for download to users registered with the UK Data Service. All requests are subject to the permission of the data owner or his/her nominee. Please email the contact person for this data collection to request permission to access the data, explain your reason for wanting access to the data, then contact our Access Helpdesk.