Participant Information Sheet
Name of department: HaSS, School of Education University of Strathclyde
Title of the study:
Finding a voice: An Investigation into the Challenges Faced by Autistic People/People with
Autism in Achieving Meaningful Participation in Policy Development in Local Authority
Contexts.
My name is Emma Hanley I’m a Speech and Language Therapist and the Co-ordinator for
Autism Network Scotland. Autism Network Scotland is an organisation funded to support
the implementation of the National Strategy for Autism, with a particular focus on wider
engagement. I am currently studying for a Master’s degree in Autism at the University of
Strathclyde under the supervision of Dr Anna Robinson. In the context of my studies I am
conducting research into how autistic people/people on the autistic spectrum view their
involvement in developing their local area autism strategies and their experiences of
meaningful inclusion when attending local area strategy meetings throughout this process.
What is the purpose of this investigation?
The purpose of this investigation is to gain a better understanding of the experiences of
autistic people/people on the autistic spectrum when they engage with their local
authorities to help create and implement their local autism strategies. The study will focus
on the extent to which autistic people feel their voices are heard and listened to and the
barriers to inclusion, in the context of such policy development.
As a participant your voice will be anonymous, but the findings from the study will be
shared with local authorities and the Scottish Government with a view to creating a better
understanding of the experiences people on the autistic spectrum have in participating in
autism policy development.
Do you have to take part?
Participation is voluntary and all information will be anonymised for the final report.
Participants are invited to discuss their experiences of taking part in the development of
their local area autism strategy with particular focus on experiences of attending meetings
with members of their local authority autism strategy groups. If you do not wish to
participate, this will not have any impact on any future interaction with Autism Network
Scotland. You also have the right to withdraw from the study at any time.
How do you take part in providing information for the project?
There are two ways in which you can provide information about your experiences.
You will be invited to take part in a semi-structured interview which will last approximately
45 minutes. The interview will ask about your experiences of meeting with people from your
local strategy development group and wider stakeholders from your local authority during
the development of your local area strategy
You will be invited to take part in a focus group with other people on the autistic spectrum,
in your local area. Group discussions will last for approximately 60-90 minutes.
If you are interested in being involved in a semi-structured interview and/or a focus group
these will take place in person and will take place at a range of locations including One Stop
Shops, the University of Strathclyde and local authority premises. Interviews and focus
groups will take place from August through until December. Conversations will be audiorecorded and interview questions and discussion themes will be sent in advance.
For further information please contact Emma Hanley on 0141 444 8146 or by email:
emma.hanley@strath.ac.uk.
Why have you been invited to take part?
The study will include participants who:
-
Are autistic/on the autistic spectrum.
Have attended meetings/ consultations in relation to the development of their local
area autism strategy in the past 12 months.
What happens to the information in the project?
The transcripts from interviews and focus group discussions will be stored securely on the
University’s servers by the investigators and will be used for the purpose of the study as
outlined above. Participants taking part in the study will remain anonymous and names or
specific details will not be identifiable in any reports or written data that is produced as a
result of the study.
The University of Strathclyde is registered with the Information Commissioner’s Office who
implements the Data Protection Act 1998. All personal data on participants will be
processed in accordance with the provisions of the Data Protection Act 1998.
Thank you for reading this information – please ask any questions if you are unsure about
what is written here.
What happens next?
If you would like to take part in either an interview or a focus group, please contact me,
Emma Hanley on 0141 444 8146 or by email: emma.hanley@strath.ac.uk.
If on the other hand you do not choose to be involved in this project the investigators would
like to thank you for your attention.
Participants who wish to receive a summary of the research results should contact the
Student Investigator (Emma Hanley).
Participants can receive feedback about the study through a range of means, including faceto-face discussion and discussions at future Autism Network Scotland Learning Events.
Findings may also be published in a journal such as Good Autism Practice.
Student Investigator:
Emma Mairi Hanley. Level 6, Curran Building, 101 St James’ Road. Glasgow. G4 0NS