Lots of information about research studies has come in this week, including this locally based study into a very real problem for some people, that could include some with Down syndrome and their families.
Natalie Berg is a doctoral researcher in Health Sciences at the University of Sydney, looking into the experiences of younger people living in nuring homes, and their carers. She is very keen to include the voices of carers/ family members of younger people with intellectual disability in nursing homes, to find out what younger people in nursing homes and their families think of their situation and would they like any changes in the future given the coinciding roll out of the Younger People in Residential Aged Care Program (YPIRAC) Program by the NSW Dept Ageing, Disability and Home Care.
The study is called "What’s it like to live in a nursing home? Exploring the experiences and residential preferences of people under 65, their families and nursing home staff." Answers will vary, and are being sought in a spirit of genuine enquiry. The study has the appropriate ethics approval.
It is a difficult area in which to gain access to the people most affected. Natalie says "I am aware after completing disability research in the past and working in public health and nursing homes for five years now the 'extra' burden it is for professionals and family members to participate in research but I have developed many strategies to minimise this burden as much as possible. I would be happy to send any information to anyone who might be interested in participating."
If this sounds like you, or someone that you know about, you can access further information from the Participant Information Sheet, by clicking here.
Or if you have any further questions or would like to find out more about this research, please call either Natalie Berg on (02) 4733 3249 or Leanne Togher from the University of Sydney on (02) 9351 9639 and they will be happy to talk to you.