Invitation and Participant Information

Invitation
You are invited to participate in a research study exploring the experiences of social workers in supporting people with a life-limiting illness to access the NDIS.

The study is being conducted by:

Dr Pippa Blackburn Dr Lise Johns Dr Sabine Wardle Ms Tegan Brazier
Adjunct Lecturer Senior Lecturer Senior Lecturer National Project Co-Lead
Charles Sturt University Griffith University Charles Sturt University Palliative Care Social Work Australia (PCSWA)
Chair Palliative Care Social Work Australia Logan campus, Qld Wagga Wagga campus, NSW
[Charles Sturt University is an Australian University, TEQSA Provider Identification: PRV12018. Charles Sturt University CRICOS Provider: 00005]

Before you decide whether or not you wish to participate in this study, it is important for you to understand why the research is being done and what it will involve. Please take the time to read the following information carefully and discuss it with others if you wish.
What is the purpose of this study?
There is a growing need for people under 65 with life-limiting illnesses to receive adequate support services in the community if they wish to remain at home. Increasingly, access to NDIS is not likely for this cohort of people, however there is an urgent need to address gaps in services that assist with daily living, functional and other basic non-clinical support. As a result, people at the end of life are experiencing structural disadvantage from the policies of disability, health and aged care systems, impacting the care they receive in their final months and weeks of life. Information from this online anonymous survey will provide background information to support advocating for changes to NDIS for palliative care clients.

Why have I been invited to participate in this study?
We are seeking social workers who have worked, or are currently working, in a palliative care service, health or other setting and supporting people with a life-limiting illness to access the NDIS. Participants are to be 18 years of age or above, who live and work in Australia to participate in this research.

What does this study involve?
This anonymous survey has a series of questions, delegated into two sections:
Section A: About you
Section B: About your experiences supporting clients with NDIS applications using case examples. This section will allow for up to 3 case examples to be recorded.

The survey will take approximately 15 minutes to complete however if more than one case example is provided, it may take up to 30-45 minutes for you to complete.

The survey will initially be available from 1/4/2024 to 21/4/2024. The survey may be repeated within the following 6-12 months for a period of no longer than one month if more responses are required.
Are there risks and benefits to me in taking part in this study?
It is acknowledged that this study will have no direct benefit to the participants. However, overall, it is hoped the results will ultimately illuminate not only the challenges for palliative care patients to access NDIS but will also highlight the gaps in support services in the community and the role social workers play in assisting people to access the NDIS. The information from the survey will provide a basis for advocacy to Government and other agencies and to inform policy directions. It is anticipated the findings will potentially guide and facilitate support planning for people in palliative care who need access and support through NDIS. De-identified results of this study will be disseminated via a report on the PCSWA website and subsequently in a journal article and/or at an appropriate conference.

It is important to note the questions have been designed to be non-invasive. If, for some reason, the questions evoke an emotional response, it is recommended you contact Lifeline on 1311 14 or Beyond Blue at 1300 224636.

How is this study being paid for?
This study is not funded by any internal or external grant.

Will taking part in this study (or travelling to) cost me anything, and will I be paid?
There is no cost other than your time, and there are no reimbursements or payments to participants. Participants will not be paid in cash or kind.

What if I don't want to take part in this study?
Participation in this research is entirely your choice. Whether or not you decide to participate, is your decision and will not disadvantage you. Only those who give their informed consent will be included in the project.

What if I participate and want to withdraw later?
As the online survey is anonymous, once your responses have been collected they cannot be withdrawn.
*Please note that responding to the survey will be taken as your consent to participate in this research.
How will my confidentiality be protected?
The online survey is anonymous, and it will not be possible to identify you from your answers.

The data collected is confidential. No identifying material will be contained within any of the responses to the survey. Research data will be retained in a password-protected electronic file at Charles Sturt University for a period of five years from the date of the final publication before being destroyed.

The survey is being hosted on SurveyMonkey, which have a Privacy Policy and Security Statement that can be viewed from these links.

What will happen to the information that I give you?
The information collected in this study will be reported in papers in academic journals. Individual participants will not be identified in any reports arising from the project.

What should I do if I want to discuss this study further before deciding?
If you would like further information, please contact Dr Pippa Blackburn at pippa.blackburn@pcswa.org.au.

Who should I contact if I have concerns about the conduct of this study?
Charles Sturt University’s Human Research Ethics Committee has approved this project [Protocol number: H23898]. If you have any complaints or reservations about the ethical conduct of this project, you may contact the Committee through the Research Integrity Unit via the following contact details:
The Presiding Officer
Human Research Ethics Committee
Research Integrity Unit
Locked Bag 588
Wagga Wagga NSW 2678
Phone: (02) 6933 4213
Email: ethics@csu.edu.au

Any issues you raise will be treated in confidence and investigated thoroughly, and you will be informed of the outcome.


Thank you for considering this invitation.

Please print this information if you wish to keep a copy for your records.
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