Study Information

Thank you for considering participating in this research project. The purpose of this document is to explain to you what the work is about and what your participation would involve, so as to enable you to make an informed choice.

I. Project Title: Family life and autistic children with sensory processing differences

II.  Researcher: The researcher, Gina Daly, is a senior Occupational Therapist completing a PhD with University College Cork under the supervision of Dr. Helen Lynch and Prof. Jeanne Jackson.

III.  The study

The purpose of this study is to explore parental experiences of supporting their autistic child in daily and family life. This research project has Research Ethics Committee approval from the Social Research Ethics Committee (SREC).

IV.  Participation

Should you choose to participate, you will be asked to take part in three one-to-one interviews with the researcher. Each interview will take one hour. All interviews will be audio-recorded. These interviews can be completed face to face or online via Microsoft Teams depending on what you would prefer. The times and dates for these interviews will be arranged in collaboration with you and I will ensure to work around your schedule. You will also be invited to take photos and short videos of your child engaging in everyday activities. We will discuss this content as part of the interviews. This is not mandatory. I will not record, store or collect any videos or photographs of your child.

Participation in this study is completely voluntary. There is no obligation to participate, and should you choose to do so, you can refuse to answer specific questions, or decide to withdraw from the interview. Once the interview has been concluded, you can choose to withdraw your details at any time in the subsequent two weeks.

V.  Participant requirements

To participate in the study you must be a parent to a child:

a)     Aged between 3-12 years old

b)   Diagnosed with Autism based on DSM-V/ICD-10 criteria and have an     MDT diagnostic report as evidence

VI.  Participant selection

Participants who are interested can contact the researcher (details below) with any questions about involvement in the study, without any expectation to engage in the research. The researcher will ask you to read over and sign the consent form before the interviews begin.

VII.  Data and Storage

All information you provide will be kept confidential and anonymous and will be available only to the researcher and the supervisory team. You and child’s name, address and any other details which could possibly identify you or your child will not be published and will not be disclosed to anyone. The only exception is where information is disclosed which indicates that there is a serious risk to you or to others. Once the interview is completed, the recording will immediately be transferred to an encrypted laptop and wiped from the recording device. The interview will then be transcribed by the researcher, and all identifying information will be removed. Once this is done, the audio-recording will also be deleted and only the anonymized transcript will remain. This will be stored on the University College Cork OneDrive system and subsequently on the UCC server. As per the UCC Code of Research Conduct, for data retention purposes all research data must be securely stored for ten years and then destroyed.

The information you provide may contribute to research publications and/or conference presentations. The data will contribute to a thesis and research report.

We do not anticipate any negative outcomes from participating in this study. At the end of the procedure, I will discuss with you how you found the experience and how you are feeling. Should you experience distress arising from the interview, the contact details for support services will be provided.

This study has obtained ethical approval from the Social Research Ethics Committee (SREC), University College Cork.

VIII.  Contacting the researcher

If you wish to take part in this research, you can contact me at (gina.daly@umail.ucc.ie). If you agree to take part in this study, you will be required to sign a consent form before commencing. 

Yours sincerely,

Gina Daly

BSc OT, MSc SI, MAOTI, CORU Registered: OT020951