Skip to content

Latest News

Calling for research participants – Usher Syndrome or Dual Sensory Loss (Update)

Karen Wickham, a Senses Australia Deafblind Consultant interviewed by radio station 5 RPH Adelaide’s Focal Point program about the research she is conducting.

Senses Australia, a leading disability service provider with a difference, is working in collaboration with Edith Cowan University’s School Exercise and Health Sciences and is calling on participants to take part in a research study.

Karen Wickham, a Senses Australia Deafblind Consultant and Senior Social Worker, who is conducting the project says the research study will help better understand the experiences and impacts of having a parent with dual sensory loss.

“If you are over 18 years of age, are the child of a parent with Usher syndrome or dual sensory loss and would like to participate in a research project, which will involve a 60 to 90 minute interview, we would like to hear from you,” says Karen.

“Being the child of a parent or parents living with Usher syndrome or dual sensory loss presents some unique challenges and opportunities.

“Through this research, we hope to identify particular themes and issues that are commonly faced by children of parents with dual sensory loss, with a view to comparing and sharing experiences and helping to raise awareness about this unique journey,” says Karen.

The research will also be used to provide superior, inclusive long term support to families, guidelines regarding how to best develop strengths in these families; and advocacy for more relevant support services for those in the community who are deafblind.

“Building on our previous research on parenting and Usher syndrome we hope our research will guide a more holistic, informed and comprehensive approach to supporting families living with Usher syndrome and dual sensory loss,” says Karen.

Janet Richmond, Lecturer Occupational Therapy, at Edith Cowan University who is supervising the project says “it is important that we look after the family of people who have a dual sensory loss as well as the person themselves.

“Too often, service providers focus only on the person who has dual sensory loss but forget about the impact that it can have on those around them.

“It is a credit to Senses Australia that they are looking at the effect of dual sensory loss on the children as this will provide important information for service providers in the future,” says Janet.

To find out more about this research study or to volunteer, contact Karen Wickham, a Senses Australia Deafblind Consultant and Social Worker on 0424 900 788 or email