Study Information

Study Information for Parents and Caregivers 

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

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.

The study

The purpose of this study is to explore parents experiences of supporting their autistic child in daily life. This research project has Research Ethics Committee approval from the Clinical Research Ethics Committee of the Cork Teaching Hospitals.

Participation

Should you be interested in volunteering, you are advised to consider the time factor carefully prior to signing consent and agreeing to commit.  

Participation involves the following for you, as parent/caregiver of your child:

a)  The completion of a series of in-depth interviews (1-3) with the occupational therapist. These interviews can be completed face to face or online via Microsoft Teams depending on what best suits you.

a)     To video record your child engaging in activities of daily living tasks within their home environment intermittently throughout the duration of the study. This will be need to be done intermittently throughout the study duration and can be completed on your smart phone or other personal device.

Participant requirements

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

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

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.

Participants will be selected on a first come first served basis and who meet the participant requirements as defined above. The researcher will ask you to read over and sign the consent form before proceeding with the interviews. 

VII. Information gathering

a)     You will have access to all information, interview transcripts and all recordings relating to you and your child.

b) The findings of this research may be published once completed, however your child’s personal details will be kept anonymous and there will not be any identifiable information included which could identify your child. 

Data Storage and Management

a)     Confidentiality will be maintained at all times. 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. 

b) The UCC Code of Research Conduct will be adhered to for the duration of the research process. 

Contacting the researcher

If you are interested in finding out more about the study or/and taking part in it you may contact the researcher in one of the following ways: 

gina.daly@umail.ucc.ie or by phone on 086 3993503 

Dear Parent,

I am a Senior Occupational Therapist completing my PhD in Occupational Therapy with University College Cork under the guidance of Dr. Helen Lynch and Prof. Jeanne Jackson. My research is on  how families manage family life, with autistic children with sensory processing differences

For this phase of the study, I am interested in your perspective on family life with your child.

Taking part is totally voluntary

I am seeking to speak with parents only as I want to understand how families find solutions to daily life which can inform therapy practice better for the future. The research involves:

1.Meeting with me for 2-3 interviews (informal discussions) to discuss your family life experiences with your child. These will be recorded with me. I can send you the interview topics in advance which we will be discussing such as your family values, what happens at home, things you do together as a family, occupations your child enjoys, daily routines, your child’s sensory experiences.

2. The interviews can be completed online or in person in a place you feel comfortable e.g. in a coffee shop, in your home. If the interview is in-person, the researcher can travel to meet you. The interviews will be approximately one hour in length. The time of the interview can be chosen to best suit your schedule and family life.

3. If possible, I would also invite you to capture and share some photographs or videos of your child playing and engaged in an activity they enjoy at home or in the community. This will allow me to understand more about your family life through stories and pictures.

Please find enclosed an information leaflet with the formal details of the research project and consent forms, which you are required to sign if you agree to participate. This is part of ethical good practice and a requirement of the Clinical Research ethics Commitee UCC. I am happy to discuss this study with you via our contact sheet or email me on (gina.daly@umail.ucc.ie).  

I greatly appreciate your help as we look to add to the research evidence for autistic children and I look forward to meeting you.