Introduction, participant information statemment and consent to participate

This project is a partnership between ACON, Carers NSW, Palliative Care NSW, Positive Life NSW and the Seniors Rights Service.
You are invited to take part in this needs analysis about your experiences and knowledge of palliative and end of life care and planning. This is for lesbian, gay, bisexual, transgender and queer (LGBTQ+) people, people living with HIV (PLHIV) who are LGBTQ+ and/or carers/caregivers of LGBTQ+ people and/or PLHIV. Carers/caregivers in this context means partners, friends and family (chosen family and family of origin) who perform or take on unpaid caring roles for LGBTQ+ people and PLHIV.

Understanding your needs and preferences will help us develop an online toolkit to support LGBTQ+ people, PLHIV and their carers.

A community codesign process will focus on empowering LGBTQ+ people, PLHIV and their carers to have discussions, have a better understanding of their rights and have access to information and resources to make informed decisions about palliative care and end of life care and planning.
Survey promotion
Carers NSW, Palliative Care NSW, Positive Life NSW, the Seniors Rights Service and ACON (project partners) will promote this survey through all their social media platforms (Facebook, Twitter, Instagram, etc) and registered email lists.

If you know of any LGBTQ+ people, PLHIV or carers of LGBTQ+ people and PLHIV in NSW who may not have seen this survey link or do not have online access, and who you believe would like to receive a printed copy of this survey through the regular post, please phone Russ Gluyas on 02 9206 2017 or email We will post you a copy of the survey to share with the person you know with a reply-paid envelope.
Potential risks - psychological distress
You may feel that some of the questions we ask are stressful or upsetting. If you do not wish to answer a question, you may skip it and go to the next question, or you may stop immediately.

If you become upset or distressed as a result of your participation in the research project, ACON will be able to arrange for counselling or other appropriate support. Any counselling or support will be provided by qualified staff who are not members of the research team. This counselling will be provided free of charge.

If you require support, please contact ACON counselling intake on 02 9206 2000 to arrange an appointment.

There is support for carers. For more information about  Carer Services to support you, visit the Carer Gateway website at or call 1800 422 737.

You can also get in contact with other mental health services including QLife on 1800 184 527, Suicide Call Back Service on 1300 659 467 or Lifeline on 13 11 14.
Participant Information Statement
  1. Participants must be 18 years of age or older.
  2. Participants must live in NSW.
  3. Participating in this needs analysis involves completing a survey, online or print. You may skip questions or withdraw at any stage.
  4. Participation in this needs analysis is voluntary. If you don’t wish to take part, you don’t have to.
  5. There are no costs associated with participating, nor will you be paid.
  6. Whether you decide to take part or not will not affect your relationship with any of the project partners, nor your ability to take part or engage in/with any of our programs or services.
  7. All information will be collected and stored following the Health Records and Information Privacy Act 2002 (NSW) and the Privacy Act 1988 (Cth).
  8. As this is an anonymous survey, participants will not be able to withdraw from the needs analysis once they have  submitted their responses at the end of the survey.

If you decide you want to take part in the needs analysis, you will be asked to provide consent. By consenting you are telling us that you:
  1. Understand what you have read.
  2. Consent to take part in the needs analysis.
  3. Consent to the use of your personal and health information as described.

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* 1. I confirm that I wish to participate in this needs analysis

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* 2. I have read the Participant Information Statement

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* 3. I live in New South Wales (NSW)

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* 4. I am 18 years of age or older

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* 5. I am LGBTQ+ or PLHIV or a carer of LGBTQ+ people and/or PLHIV

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* 6. I consent to participating in the needs analysis