Improving palliative care services for people with an intellectual disability

Current project

People with ID 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 ID. We will consult nationally with people with ID, 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 ID. We will also develop and launch a Toolkit to improve the accessibility and quality of palliative care services for people with ID. Finally, we will establish a mechanism for improving the national data collection about people with ID receiving palliative care services, enabling benchmarking of service provision.

Participant Information

If you are, or are considering, participating in this project you will find the Participant Information Sheets and Consent Forms below. To find the appropriate sheet for you, please select whether you are participating through the interview/focus groups and/or online surveys, and then the participant group you are interested in, i.e., people with intellectual disability, their support networks and/or healthcare professionals.

 

Interview/Focus Groups

People with Intellectual Disability

Participant Information Sheet and Consent Form for People with Intellectual Disability

Participant Information Sheet and Consent Form for People with Intellectual Disability - Easy Read

Participant Information Sheet and Consent Form for Guardian Consent

Participant Information Sheet and Consent Form for Support Person

Support Network

Participant Information Sheet and Consent Form for Support Network

Healthcare Professionals

Participant Information Sheet and Consent Form for Healthcare Professionals

 

Online Surveys

Support Network

Participant Information Sheet for Support Network

Healthcare Professionals

Participant Information Sheet for Healthcare professionals

NSW Health sites

Interview/Focus Groups

People with Intellectual Disability

Link to Participant Information Sheet and Consent Form for PwID

Link to Participant Information Sheet and Consent Form for Guardian Consent

Link to Participant Information Sheet and Consent Form for Support Person

Support Network

Link to Participant Information Sheet and Consent Form for Support Network

Healthcare Professionals

Link to Participant Information Sheet and Consent Form for Healthcare Professionals

 

Online Surveys

Support Network

Link to Participant Information Sheet for Support Network

Healthcare Professionals

Link to Participant Information Sheet for Healthcare professionals

If you have any questions about the project, please contact the Project Officer, Sara Elsie Walker on (02) 9065 7786 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)