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Information for Participants

Sexuality and Cancer Study
Volunteers Wanted

Invitation

You are invited to participate in a research study exploring the experience of sexuality and intimacy in the context of cancer. The study is being conducted by: Professor Jane Ussher, Dr Janette Perz, Dr Emilee Gilbert, Dr Kendra Sundquist, Ms Gillian Batt, Dr Gerard Wain, Ms Kim Hobbs, Dr Laura Kirsten, Ms Sue Carrick, Associate Professor Ian Kerridge, Dr Cathy Mason, and Dr Amanda Horden.

This study is being conducted at the Gender, Culture and Health Research: PsyHealth, School of Psychology, University of Western Sydney, funded by the Australian Research Council, in partnership with The Cancer Council New South Wales, National Breast Cancer Foundation, Westmead Hospital, and Sydney West Cancer Network Psycho-oncology Service, in conjunction with the Centre for Values and Ethics in law and Medicine, University of Sydney.

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 the study?

To explore the experience of intimacy and sexuality after cancer from the perspective of people with cancer and their partners. Based on the findings, we will develop and evaluate programs to support couples affected by cancer.

Who can take part?

People with cancer, or people who have had cancer, and their intimate partners can volunteer. You can participate even if your partner does not.
You don’t have to be in a relationship to participate.

Do you have a choice?

Participation in this study is voluntary. It is completely up to you whether or not you participate. If you decide not to participate, it will not affect you adversely in any way. If you wish to withdraw from the study once it has started, you can do so at any time without having to give a reason.

What is required?

You will complete a one-off questionnaire about your experiences of sexuality and intimacy. It will take you about 30 minutes. The links to the surveys are provided at the bottom of this page.

Alternatively, the survey can be completed as a postal questionnaire and mailed back in a reply paid envelope. To receive a postal questionnaire please contact the Project Coordinator, Caroline Joyce on 1800 19 20 02 or email cancerandsexuality@uws.edu.au.

The survey will ask you about different aspects of your sexuality and sexual intimacy, such as how you feel about your sexual relationship, if the onset of cancer has impacted upon your sexuality, how you are feeling emotionally, and your sexual needs and experiences.

You and/or your partner can also volunteer to take part in a follow-up interview, which will take about one hour. This is not compulsory. If you are willing to take part in an interview, please complete the ‘Further Contact Form’ which can be found at the end of the questionnaires and you may be invited to attend an individual interview with a research team member. The discussion will focus on your needs and experiences of sexuality and sexual intimacy in the context of cancer, areas of difficulty, unmet needs, and support you would find helpful. This discussion will be audio taped to allow us to go over what is said in detail afterwards. This discussion will be strictly confidential. We will ask you to complete a consent form prior to participating in the interview.

Are there any risks?

Discussing sexuality and intimacy post-cancer can be difficult and has the potential to raise personal concerns. The researchers are particularly sensitive to the ethical issues in the project, and will ensure the ethical conduct of all aspects of the research. If you find any of the questions unsettling, or find that they raise issues you had not previously considered, please feel free to contact the Project Coordinator, Caroline Joyce on 1800 19 20 02 or email cancerandsexuality@uws.edu.au.

Alternatively, if you do not want to speak to a member of the research team, you can contact the NSW Cancer Council Helpline on 13 11 20, who can provide independent advice and counselling.

Are there any benefits?

This research will provide the knowledge to understand the experiences and needs of people with cancer and their partners in the sphere of intimacy and sexuality. This knowledge will be used to develop a supportive couple intervention to assist with changes to sexuality in the context of cancer. If you are interested in participating in this support service, please complete the ‘Further Contact Form’, at the end of the survey.

Confidentiality / Privacy

Any identifiable information that is collected about you in connection with this study will remain confidential and will be disclosed only with your permission, or except as required by law. Only the named researchers and personnel relevant to the study will have access to your details and results that will be held securely at the University of Western Sydney. Throughout the study, everything you say or write on the forms will be strictly confidential. In publications arising from the research, all information will be summarised and no one will be mentioned by name.

Will taking part in this study cost me anything, and will I be paid?

Participation in this study will not cost you anything. If you are invited to take part in an interview with us, you will receive $25 to cover your travel costs.

What will happen with the results?

If you give us your permission by completing the survey, or signing the consent document at the interview, we plan to discuss the results with the partner organizations who co-funded the research, in order to facilitate broader understanding of the impact of cancer on sexuality. We also intend to publish the results in peer-reviewed journals, and present them at conferences or other professional forums. In any publication, information will be provided in such a way that you cannot be identified. Results of the study will be provided to you, if you wish.

Contact details

If you have any queries after reading this information, or would like to know more about the study, or if you have any problems during the study, please contact the Project Coordinator Caroline Joyce on 1800 19 20 02 or cancerandsexuality@uws.edu.au.

Thank you for taking the time to consider this study.

If you would like to take part in this study please click, the relevant link.

Complaints

This study has been approved by the University of Western Sydney Human Research Ethics Committee (Study ref. H6545). If you have any concerns about the conduct of the study, or your rights as a study participant, you may contact the Ethics Committee through the Research Ethics Officer, tel: 02 4736 0883; fax: 02 4736 0013; email: humanethics@uws.edu.au.