Research Study: Undiagnosed medical condition
Printed From: OHbaby!
Category: Support
Forum Name: Parenting a child with special needs
Forum Description: A place for those parenting children with special needs to find support and share their thoughts
URL: https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=43430
Printed Date: 03 May 2024 at 9:58am
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Topic: Research Study: Undiagnosed medical condition
Posted By: Tatiane122345
Subject: Research Study: Undiagnosed medical condition
Date Posted: 06 July 2013 at 5:42pm
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You are invited to participate in a research study investigating the experiences of parents raising a child with an undiagnosed medical condition. This study aims to understand the unmet needs of parents with the goal of improving coping resources and support available to families in similar situations. Individuals who are 18 years or older and have at least one child with a medical condition that has remained undiagnosed for more than 2 years are invited to participate. Participation involves the completion of an anonymous online survey which should take approximately 30 minutes to complete. This study is being conducted by a Masters of Genetic Counselling student from Griffith University, Brisbane Australia, and will be conducted in accordance with the National Statement on Ethical Conduct in Human Research. Please pass this information on to anyone who might meet the criteria for study.The survey can be found at: https://prodsurvey.rcs.griffith.edu.au/undiagnosed If you have any questions please contact: Linda Humphrey Principle Supervisor Associate Lecture Griffith University Ph: +61 7 3735 7564 Email: l.humphreys@griffith.edu.au Tatiane Yanes Principle student researcher Masters of Genetic Counselling Griffith University Email: tatiane.yanes@griffithuni.edu.au |
Replies:
Posted By: susieq
Date Posted: 07 July 2013 at 8:48am
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I have a 27 year old daughter who was only ever diagnosed as epileptic and developmental delay, but probably more than these ------------- susie |
Posted By: TatianeYanes
Date Posted: 03 August 2013 at 4:02pm
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Hi Susieq, If you were never given an explanation for what caused your daughter's developmental delay then you are eligible to participate. We are keen to hear from as many parents as possible and with varying experiences so we have a good overview of the issues associated with not having a diagnosis. Thanks Tatiane |
Posted By: TatianeYanes
Date Posted: 03 August 2013 at 4:06pm
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Hi Everyone, Just a quick note to say thank you to everyone who has participated in our study so far, we appreciate you taking the time to complete our survey. The research project will be finishing up soon so if you would like to participate please click on the link below: https://prodsurvey.rcs.griffith.edu.au/undiagnosed Tatiane 
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Posted By: susieq
Date Posted: 04 August 2013 at 5:15pm
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is it too late to do the study ------------- susie |
Posted By: TatianeYanes
Date Posted: 06 August 2013 at 8:25pm
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Hi Susiq, The survey will be open for another couple of weeks so you can still participate in the study. Thanks Tatiane |