Participant Information
Information for participants

This study is being conducted by researchers from University College Dublin and the Irish Prostate Cancer Outcomes Research programme. The study team includes Rowan Kearns, Professor William Watson, Mr David Galvin and colleagues from UCD/IPCOR.

This study has received ethical approval from the UCD Human Research Ethics Committee – Sciences.

Research Ethics Reference Number: 168-LS-26-C-Kearns-Watson

Who can take part?

You may take part if you are aged 18 years or older and are currently, or have previously been, the partner of someone diagnosed with prostate cancer in Ireland or Northern Ireland.

This includes partners of people who are or were managed with active surveillance or watchful waiting, as well as partners of people who have received surgery, radiotherapy, hormone therapy or another prostate cancer treatment. Active treatment is not required for you to take part.

Why are we doing this study?

A prostate cancer diagnosis and its management or treatment can affect intimacy, sexual wellbeing, emotional wellbeing, communication and relationships. Partners may also have their own information and support needs, but these experiences are not always discussed or measured.

There are currently limited dedicated supports and programmes for partners of people diagnosed with prostate cancer. We hope this study will provide evidence to help advocate for better partner-centred and couple-centred information, services and support in the future.

What will taking part involve?

You will complete an anonymous online survey. The survey will ask brief questions about you and your relationship, your understanding of your partner’s prostate cancer management or treatment, intimacy, communication, sexual wellbeing, information and support needs.

The survey should take approximately 10 to 15 minutes to complete.

The survey includes a questionnaire called SCIPPP-F, which was developed to measure sexual concerns in female partners of people with prostate cancer. All eligible partners may complete the questionnaire. Female partner responses will form the primary validated analysis. Responses from male partners and partners of other gender identities will be analysed separately and descriptively and will not be presented as validated SCIPPP-F scores.

Do I have to take part?

No. Taking part is voluntary. Choosing not to take part will not affect your own healthcare, your partner’s healthcare, or your access to cancer information or support services.

You may skip any question you do not wish to answer or that does not feel relevant to your experience. You may stop completing the survey at any time before submitting it.
What are the possible risks?

Some questions may feel personal or uncomfortable because they ask about intimacy, sexual wellbeing, emotional wellbeing, communication and relationship changes. You may skip any question you do not wish to answer.

Although the study is not expected to cause harm, reflecting on these topics may cause temporary emotional discomfort or bring up concerns about your own wellbeing, your relationship or your partner’s prostate cancer experience. Support information is provided at the end of the survey.

What are the possible benefits?

There may be no direct benefit to you from taking part. Your responses may help researchers, healthcare professionals and support organisations better understand the experiences, information needs and support needs of partners of people diagnosed with prostate cancer.

Will my information be confidential?

Yes. The survey is anonymous. You will not be asked to provide your name or contact details, and your responses will not be used to identify you.

Please do not enter any information in free-text boxes that could identify you, your partner, a hospital, a healthcare professional or another person. If identifying details are entered accidentally, they will be removed or generalised before analysis or reporting.

Can I withdraw?

You may stop completing the survey at any time before submitting it. Because the survey is anonymous, the research team will not be able to identify your individual responses after they have been submitted. It will therefore not be possible to withdraw your survey data after submission.

How will the data be stored?

Survey data will be collected through SurveyMonkey and exported to secure UCD-managed storage. Access will be restricted to authorised members of the UCD/IPCOR research team.

Anonymous study data will be retained for seven years after completion of the study to allow analysis, publication, reporting and academic review. At the end of this period, the data will be securely destroyed unless continued retention or further archiving has been formally approved in line with UCD/IPCOR policy and ethics requirements.

What will happen to the results?

Results may be published in academic journals, presented at conferences, included in IPCOR or UCD reports and shared through public-facing summaries. Plain-language summaries may be made available through IPCOR/UCD websites, approved social media channels, cancer support organisations and patient or partner support networks.

No individual participant, patient or couple will be identifiable in any report, presentation or publication.

Who can I contact?

For questions about the study, please contact:

Rowan Kearns
UCD School of Medicine / Irish Prostate Cancer Outcomes Research Programme
Email: rowan.kearns@ucd.ie

This contact is for questions about the study only and should not be used for clinical advice, counselling or urgent support.

Please click “Next” if you have read this information and would like to continue to eligibility screening.
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