AutisticaCitizenScience

Project management and resource repository for the Autistica/Turing Citizen Science project

View the Project on GitHub alan-turing-institute/AutisticaCitizenScience

Creation of focus group summary documents

Contents

What are the summary documents?

This folder contains summaries and quotations from three focus group sessions held with autistic people, the relatives and carers of autistic people, researchers and developers, about the Autistica/Turing citizen science project.

The sessions were held with members of Autistica’s Insight group, Fujitsu, The Turing, and Autistica on 18 and 24 September 2019, and 4 October 2019. You can read the detailed summaries by following these links:

We want to share the insights from our conversations to help others understand how they can best support the needs of autistic people with sensory processing differences.

The summary document is a collection of anonymised quotes from focus group participants.

Quotations have been shortened or summarised, labelled according to the speaker (see the key in the README file), and all information has been depersonalised.

These summaries have been circulated to all participants to offer them the opportunity to remove or modify their comments if they wish. Based on the feedback receieved, none of the content was requested to be changed, but the format was modified.

In total, the focus groups included 9 autistic people, 5 parents of autistic people, and 4 people who were both autistic themselves and the parents of autistic people. They were also attended by researchers from The Alan Turing Institute, and members of Fujitsu and Autistica - some of whom were themselves autistic, the parents of autistic people, or both.

How were the summary documents created?

1. Design focus group agenda:

An agenda for each session was written to loosely guide the focus group discussions. These were based on researcher knowledge of what was important to investigate and determine from a developer and researcher prespective, as well as from the input of autistic poeple, their relatives and carers, in earlier, informal scoping sessions. The request for potential questions was also sent out to subscribers of the project’s mailing list, and autistic collaborators input suggestions.

2. Run focus group

Participants came to a focus group at Fujitsu to talk about a project to design a platform to use for autism research.

These sessions were run according to the project’s study protocol for in-person sessions, detailed in the study protocol

In line with Autistica’s policy, all sessions were held outside of rush hour. The sessions were held in Fujitsu’s offices in Baker Street, London. Refreshments including vegan and gluten free options were provided after the request of some participants, and a quiet room was available. There were always multiple facilitators present. All participants were talked through a schedule agenda and a consent form, as well as a participant information sheet

All participants from Autistica’s Insight Group were paid in line with Autistica’s policy and involve guidelines.

The focus group was recorded.

2. Transcribe discussion

All data from the focus groups were collected and processed in accordance with the project’s data management protocols for in-person sessions

The focus group was written down word-for-word. No personally identifying information was included in this document.

Personally identifying information includes:

The recordings were then deleted.

3. Collect anonymised quotes

Quotations were taken from the document, shortened, and organised into groups based on common themes.

The quotations were labelled to show whether the speaker is autistic, or the parent or carer of someone autistic, if they are one of the project’s researchers, and which organisation they come from. The quotes are also labelled to show whether the speaker is talking directly about their own experience, indirectly about someone else’s experience, or generally about a group’s experience. This labelling system was co-designed by a researcher and an autistic collaborator.

The resulting, organised and labelled insights were sent to participants.

4. Review the summary document

All participants had a chance to review the summary document and make changes. They were given 14 days to do this. All participants from Autistica’s Insight group were paid £30 for this additional work.

We asked them to:

  1. Understand the purpose of the document and what is going to happen with the insights.
  2. Understand the information in the document.
  3. Ensure the information is appropriately anonymised.
  4. Send us any requested changes.

All participants were emailed review guidelines

There were no requested changes to the content of the documents, however there were some suggested improvements to the layout, formatting, and labelling of the documents. The document was then changed on the basis of this feeback.

How will the summary documents be used?

Publish insights online

The summary documents are published online at: https://github.com/alan-turing-institute/AutisticaCitizenScience.

The quotes from the focus groups can be used by anyone and for any purpose. Anyone using the information must credit the Autistica/Citizen Science community.

Potential users include:

Write down platform requirements

The suggestions from the focus group will be turned into a to-do list for the project team of researchers, developers, and designers, and for the wider community.

These will be visible as issues in GitHub, and will be linked to the source in the summary.

The issues will be used to help build the citizen science platform.

We can’t do everything, but we will try our best to follow the suggestions included in the summaries.

Please email gaitkenhead@turing.ac.uk with any feedback or requests for changes, or add them to our “always open” Google Form at https://bit.ly/AutisticaTuringCitSciForm