PARENT INFORMATION SHEET FOR THE PHOTOGRAPHIC STUDY OF EATING BEHAVIOURS IN CHILDREN ON THE AUTISM SPECTRUM
What is the study about?
We would like to understand more about the diet of child with an autism spectrum disorder. We realise that many children with an autism spectrum disorder have particular likes and dislikes when it comes to food. If your child has an autism spectrum disorder, then you may be interested in taking part.
What would I need to do?
We will give you a disposable camera with a flash and would like you to take a set of photographs that you feel tell the story of your child's eating and diet. The film will then be collected and two sets of photographs will be printed. Following that one of our researchers will meet with you so that you can tell her about the photographs and what they show. You will be given one set of photographs to keep.
How much time is it likely to take?
Taking the photographs could be done over a few days or a week. The length of the interview is up to you. We would expect an interview to last between 1 and 3 hours. However, we could have two shorter interviews instead if they suit you or if you feel that one was not enough.
How will the interview be recorded?
We will make an audio recording of the interview. This will be typed up as a record of the meetings. The tape can be turned off upon request any time during the interview. You can ask us to remove any verbal comments or statements that you make during the interview up to two weeks after the interview takes place.
What about childcare when I am being interviewed?
We will discuss this with you. We hope to have money available for some childcare if that is helpful.
What languages can we talk in?
The languages on offer this time are English and Korean. We hope to extend this study in the future and offer more languages, especially Te Reo.
What will you do with the photographs I take?
We will give you one set of photographs. We would like to use the other set to illustrate some of the things you tell us. You can remove photographs from the study if you do not want them used, and this would happen either at the time of the interview or up to two weeks after the interview. At the time of the interview we will check that the photographs that remain included can be used in talks about this research project. All photographs will be approved for their proposed use by you. We will show you any brochures or websites or medical articles that we write in order to get your approval for any of your photographs that are included.
Will my child be identified in the writing or the pictures?
No, no child or parent will be identified by name. We will not use the photos that would allow easy identification of the child. You can choose a '~study name' for your child, and we will use that name when we write about them.
Who will learn from the study findings?
The short answer is other families and health and education professionals. We use the results of our study to produce a leaflet or other publication. This will encourage families who are facing similar issues that they are not alone. The information will help educate doctors and other health professionals around the issue of eating problems in some children on the autism spectrum. Photographs will be a great help in getting the message across. As you know, photographs can be a very good way of communicating.
Will I be disadvantage in any way if I decide not to take part?
No, whether you take part or not is your decision, and no service that you receive will be affected. You can withdraw from the study at any time. You will not need to give an explanation.
Who is running the study?
The study is run by Dr Phillipa Clark, a Developmental Paediatrician from the Department of Paediatrics, University of Auckland. Her contact details are at the top of this form.
Who can I talk to if I have concerns about the study?
You can contact Dr Phillipa Clark, or. For ethical concerns contact: The Chair, The University of Auckland Human Participants Ethics Committee, Office of the Vice Chancellor, Secretariat, Room 005, Alfred Nathan House, 24 Princes Street, Auckland. Tel: 373-7599 extn. 87830.
APPROVED BY THE UNIVERSITY OF AUCKLAND HUMAN PARTICIPANTS ETHICS COMMITTEE ON October 15th 2007 FOR 3 YEARS REFERENCE NUMBER 2007/341