1. Study title and Researcher(s) Details
Title: Investigating the diagnostic experience of parents/caregivers of autistic children in the UK for the purpose of future cross-cultural comparison
Researcher: Sarah Gilhooley Associated Researchers: Sarune Savickaite, Emma Hayashibara Supervisor: Dr. David Simmons
You are being invited to take part in a research study. It is important for you to understand why the research is being conducted and what it will involve. Please take time to read the following information carefully.
2. What is the purpose of the study?
Currently, the incidence of Autism can differ between different countries. Researchers believe that these differences arise as a result of varying cultures and diagnostic methods used in different countries. In order to better understand Autism and work towards standardisation within the diagnostic process, a focal point in Autism research has been the comparison of diagnostic experiences across countries, however there are not many that have been done so far. This study aims to investigate the experiences of parents/caregivers of children who have undergone the autism diagnostic process in the UK, with a view to establishing a set of baseline data for comparison with similar data from other countries.
3. What do I have to do?
The study will involve an online questionnaire where you will be asked about your experiences as a parent/caregiver of a child who has gone through the autism diagnostic process. We will ask questions about experiences in parenting/caregiving prior to the diagnosis, leading up to now, following the diagnosis. The questionnaire is expected to take about 30 minutes to complete.
4. Why have I been chosen?
This study is open to anyone who is the parent/caregiver of a child diagnosed with Autism. There is no limit to your age or your child’s age. Anyone who the above applies to can take part if they would like.
5. Do I have to take part?
Your participation is on a voluntary basis and your participation would be greatly appreciated. If you choose to participate, you can withdraw your consent to be included in the research at any time.
6. What are the possible advantages and disadvantages of taking part?
The questions in the study may bring back memories of events that may have been distressing. However, please be assured that the questions will not ask for details of events that may have caused negative emotions. Questions that require written responses are open-ended, and do not ask about specific emotions. Additionally, the questions will not require any confidential information to be disclosed in the responses. An advantage of taking part in this study would be that it forms the first stage of a novel cross-cultural study. This study will be one of the first comparisons of the UK and other countries in this context.
7. Will my taking part in this study be kept confidential?
The data collection period will end on the 7th of March 2023, and data processing will begin shortly after. As the data will be anonymised, we will not be able to remove your responses. But please be assured that the questions will not require identifiable information to be included and, all data will be saved on a password-protected database only accessible by the research team, but any documents that contain any identifiable information will be completely deleted.
8. What will happen to the results of the research study?
They will be used for analysis to create a general overview of the diagnostic process, and compare the answers given by parents from other countries to identify similarities and differences. The aim is to analyse responses to suggest specific further research areas and potential improvements for the process going forward.
9. Who can I contact if I want more information?
If you would like further information about the study and/or a summary of the anonymised group results please feel free to contact myself, at 2437846g@student.gla.ac.uk or my supervisor, Dr. David Simmons (David.Simmons@glasgow.ac.uk)
This project has been reviewed by the College of Medical, Veterinary and Life Sciences Ethics Committee.
Here is a link to the Privacy Notice for this study: https://gla-my.sharepoint.com/:w:/g/personal/2437846g_student_gla_ac_uk/EYpKrc_fvyRGgXICqxgfAXcBzpempDZro90mWni9s3Ws4g?e=gUAO7x
The document outlines how your data will be used and the legal basis for processing your data.
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