Research news and commentary #5 for 2015

Genetic disorders in children: An assessment of fathers coping strategies, wellbeing, and support

Find Lab (Family Interaction and Neurodevelopmental Disorders) is based in the School of Psychology at the University of Newcastle, Australia.

' ... (our research) acknowledges the importance of family and social support in promoting health and well-being in vulnerable children and young people. In particular the focus of our research is on young people with Neurodevelopmental Disorders such as 22q11.2 deletion syndrome (also known as velo-cardio-facial syndrome), Williams syndrome, Prader-Willi syndrome, autism spectrum disorders and their families. We also investigate the Mental Health of Parents and the impact of mental health issues on child development. This research includes biological and foster carers with and without mental health issues.'

You are invited to participate in this study as a father or male caregiver of a child diagnosed with a diagnosed neurogenetic disorder (such as 22q11.2 deletion syndrome, Velo-cardio-facial syndrome, DiGeorge syndrome/sequence, Fragile X, Down syndrome, Prader-Willi syndrome, Tuberous Sclerosis, etc.).

The online survey asks about experiences of well-being, coping styles and access to support.

• Contact: Kirsty Rudd, Kirsty.Rudd@uon.edu.au

Thick cortex could be key in Down syndrome

Drexel University,  19th June 2015
The thickness of the brain's cerebral cortex could be a key to unlocking answers about intellectual development in youth with Down Syndrome. It could also provide new insights to why individuals with this genetic neurodevelopmental disorder are highly susceptible to early onset Alzheimer's Disease later in life.

Dementia diagnostic criteria in adults with Down syndrome 
Rosalyn Hithersay, Learning Disabilities Elf, 5th June 2015

... Although we may think of dementia as covering a range of diseases that mainly affect people’s memory, in people with DS, carers may see personality changes and problems with planning and controlling behaviour before memory problems are noticeable (Ball et al., 2006).

As dementia may develop differently in people with DS, we do not know if the criteria that we use to diagnose dementia in the general population are suitable for this group ...

Down Syndrome Education International Research Forum (UK)
The Down Syndrome Research Forum is a regular international event, sponsored by Down Syndrome Education International, where researchers and practitioners meet to discuss current research, recent findings and implications for practice. Call for papers now open, closes 26th June 2015.

22nd - 23rd September 2015 - London

Can we model the development and maintenance of self-injury in children with developmental delay?

Alix Dixon, The Learning Disabilities Elf, 1st July 2015

Self-injurious behaviour is demonstrated in some children with developmental delay and is known to have a substantial impact on the well being of the children and their carers. Studies suggest that the prevalence of self-injury in children with severe learning disabilities is around 17% ...

Lines of Inquiry June 2015 - Centre for Applied Disability Research newsletter