Research Matters Genetic Disorders in Children: An Assessment of Parental Coping Strategies and Positive Growth In 2012/2013, we looked at traumatic experiences that parents of children with neurodevelopmental disorders go through. We conducted a survey relating to how and when you found out your child had a genetic condition. We also examined whether you had told your child of their diagnosis. The vast majority of the parents reported that getting the diagnosis was an extremely challenging and distressing experience. However, we found that these families displayed remarkable strengths in dealing with adversity and that the many parents learn to accept the diagnosis; or even report positive changes such as stronger family relationships. Following on from that study, we would like to further investigate how your child has impacted your life. We are interested in your emotional reaction, how you coped, and how resources (such as social support) have helped or hindered your experience. There are no direct benefits from participating in the study. However, we hope it will help us to gain a broader understanding of issues facing parents and caregivers to children with both diagnosed (e.g., Fragile X syndrome) and undiagnosed conditions. We hope that the results of the study may improve health care processes and models associated with these conditions. Your input is very important to us and as such we are keen to share the results with you. Once you have completed the questionnaire, you have the opportunity to request an easy read summary of the results from the project, which will be provided at the conclusion of the study. Alternatively, you can contact the researchers. We will also make these results available on the study website and via the Fragile X Association website. If you would like to read more about the study, begin the questionnaire, or read the results from the 2012/2013 study, please follow this link: www.wix.com/c3094005/geneticdisorders If you have any questions please do not hesitate to contact us: Jane Goodwin (PhD Candidate) University of Newcastle (02) 4348 4530 Jane.Goodwin@uon.edu.au
Dr Linda Campbell (Chief Investigator) University of Newcastle Linda.E.Campbell@newcastle.edu.au
Update on “Message in a Bottle” Study If you had the chance to send a message to your primary care provider about the health and care of your adult child…what would you say? Families of adults with intellectual disability and specific syndromes have a wealth of experience and knowledge about the associated health issues. We seek to gain a deeper understanding of the concerns and needs of adult patients with specific genetic syndromes from the people who know them best. QCIDD (Queensland Centre for Intellectual and Developmental Disability) and UQ School of Medicine are undertaking research with the ultimate goal of your words, experiences, and feedback reaching the primary care providers in an effort to open up the conversation about improvements to be made and the needs of adults and their families. The survey link was posted on the FXAA Facebook page late last year. The responses received so far through interview and online survey have provided clear, compelling, and multi-faceted messages of important issues and challenges that families of an adult child with a rare genetic syndrome face every day. Many of these complications and issues appear to be largely avoidable though improvements in primary care provision; through the need for greater transparency, honest and open communication, and above all respect for both the adult child themselves as a valuable and unique individual, and the family who provide the greatest insight and understanding of person’s medical history and when there are changes which require attention. It is through the observations and experiences of the parents and caregivers that this vital patient information is provided, which is imperative to the delivery of safe and effective healthcare. The richness of data received is not adequately reflected in this short piece, and the researchers Carmel Blackburn (UQ Summer Research Scholar and Nursing student) and Miriam Taylor-Gomez (QCIDD and UQ SoM) would like to thank the contribution that the Fragile X Association and its members have made in obtaining this information. We will keep the Association updated quarterly as the process moves forward.
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Summer 2014
Fragile X Association of Australia