Improving palliative care services for people with an intellectual disability

Current project

Pilot study: volunteers needed  

We have launched a pilot component of this project, which aims to test new information resources to support the tailoring of palliative care for people with intellectual disability. The resources are for people with intellectual disability, their supporters and health professionals.    

The research team are looking for volunteers to test and give feedback on the resources, including:   

  • People with intellectual disability (aged 18 years and older) who are accessing palliative care services in South Western Sydney and South Eastern Sydney Local Health Districts, and 
  • Paid and unpaid supporters (aged 18 years and older) of people with intellectual disability who are accessing palliative care services in South Western Sydney and South Eastern Sydney Local Health Districts  

If you would like to participate or find out more details, please see the Participant Information Sheet and Consent Form or contact our Program Manager, Olivia Burton at IDPalliativeCare@unsw.edu.au or 02 9348 1732.

Participant Information Sheets and Consent Forms – South Eastern Sydney Local Health District

 

Participant Information Sheets and Consent Forms – South Western Sydney Local Health District

Recruitment opening soon. If you are interested in participating from this District, please email Olivia at IDPalliativeCare@unsw.edu.au.

 

About this project

People with intellectual disability are experiencing increasing rates of life-limiting illnesses such as respiratory diseases, circulatory diseases and cancer, but are under-referred to palliative care services. Further, there is currently no specific guidance or model of palliative care in Australia for services to meet their unique needs.

This project will use a mixed-methods approach incorporating large linked datasets and qualitative data to examine access to and the impact of palliative care for people with intellectual disability. We will consult nationally with people with intellectual disability, carers, and professionals, and will translate our findings into the co-design, trial and preliminary evaluation of a tailored model of palliative care for people with intellectual disability. We will also develop and launch a Toolkit to improve the accessibility and quality of palliative care services for people with intellectual disability.

Finally, we will establish a mechanism for improving the national data collection about people with intellectual disability receiving palliative care services, enabling benchmarking of service provision.

If you have any questions about the project, please contact the Project Officer, Amanuel Hagos on (02) 9348 0111 or IDPalliativeCare@unsw.edu.au

Related People
Chair of Intellectual Disability Mental Health, and Head, Department of Developmental Disability Neuropsychiatry
UNSW Medicine, School of Psychiatry, Department of Developmental Disability Neuropsychiatry (3DN)