Survey for people affected by cancer

What is the purpose of this study?

You are being asked to take part in an online research survey so we can better understand the impact of COVID-19 and social distancing measures on people affected by cancer. This includes those with a current or previous cancer diagnosis and carers and/or family members of people affected by cancer. We are interested in learning about how the recent outbreak has affected your emotional wellbeing, as well as hearing about your experiences of accessing cancer treatment and cancer services. The findings will also provide valuable information to inform the development of new services in response to the pandemic and other future crises that have unique impacts on people affected by cancer.

Why am I being asked to participate?

You are eligible to participate in this research if you are over 18 years old, are currently living in Australia and have been affected by cancer. This includes people with a current or previous cancer diagnosis, and family members, partners or friends of someone living with cancer.

What if I don’t want to take part, or if I want to withdraw later?

Your participation is completely voluntary, and you may withdraw at any time for any reason until you submit your response to the survey.  You may also skip questions you do not want to answer, apart from a few mandatory questions. Once you complete the survey it will not be possible to  withdraw your response as we are not collecting identifiable information.  The information you provide will only be presented as summary results in the study findings.

What will the study involve?

If you agree to participate, you will be asked to take a short online survey. This survey should take approximately 15 minutes to complete. We will ask you a few questions about your age, gender, current health situation, as well as some specific questions about how you have been impacted by the recent COVID-19 pandemic.

What are the risks?

We anticipate the risk of participation in this study is low. However if any of the questions cause you any distress or concern then we are able to refer you to other sources of support, please contact the Cancer Council’s 131120 Information and Support Line; Lifeline (131114) and/or Beyond Blue (1300 22 4636). We will also minimise risk through protecting your confidentiality (please refer to the confidentiality question below).

How is this study being paid for and will I receive any incentives for taking part?

The study is being run and paid for by Cancer Council NSW. There are no direct benefits if you take part in this survey, but the information you provide will be used to promote the health and wellbeing of people affected by cancer in Australia. 

How will my confidentiality be protected?

We will not be asking you for any personal information in the survey questions that could be used to identify you (such as name or postcode). The survey data will be stored securely at Cancer Council NSW and access will be restricted to the research team involved in this project. In any publication or report, information will be provided in such a way that it cannot be used to identify you.

At the end of the survey you will be given the option to leave your contact details should the research team want to conduct some follow up research (i.e. interviews) with participants in this study. This is entirely optional, and these details will be collected through a separate form, and therefore, will not be linked to your individual response. Should you choose to leave your contact details, the research team at Cancer Council NSW will keep these confidential. If you decide not to provide your details for follow-up then it will not impact your participation in this survey.

How will the results be used?

A summary of results from this survey may be published in research journals, presented at academic conferences or used for media releases, using summary data only. If you would like to receive a summary of the results, then these can be made available upon request.

If appropriate, the non-identifiable data from this research project may be shared with other researchers working on similar research projects in relation to COVID-19 and cancer.

Contact Information

If you have any questions about this survey, you can contact the Behavioural Research and Evaluation Team at Cancer Council NSW at birde@nswcc.org.au.  

This research has been approved by the Cancer Council NSW Human Research & Ethics Committee. If you have any concerns about the conduct of this study, then please contact ethics@nswcc.org.au and quote [HREC ref]
 
Thank you for your valuable time and participation.