A new study to help us understand your needs better

Cosette Member Posts: 637
edited November 2016 in Community news and events

EDIT: This study is wrapping up soon so we're giving it one final push. Thanks to everyone who has participated so far!

Hi everyone. Some of you know Katerina. She’s been with BCNA since 2015 and she works with our Community Liaisons and Member Groups.

Katerina is also a student pursuing studies in psycho-oncology, specifically the quality of life of women diagnosed with breast cancer. As part of her Psychology Honours study, she’s doing a study on the factors that impact the quality of life of our online network members.

This is not a BCNA study, but Katerina is using her student research on the work that she loves and BCNA is happy to support her. The study will help us understand your needs better so that we can improve our resources.

The details are below, but here are the main points;

  • It’s an online survey with 23 questions and should take about 10 minutes to finish.
  • The information you provide is confidential.
  • This survey is optional. Your participation in the online network will not be affected.
  • Who is eligible? Women who are 18 or older, who have been diagnosed with breast cancer, and have an online network user name.

Ready to take the survey? Click here: https://vuau.qualtrics.com/SE/quality_life

Want to find out more? Read on.

 You are invited to participate

You are invited to participate in a research project entitled Sharing is caring: An exploration of factors impacting the quality of life in online network breast cancer participants.

This project is being conducted by a student researcher Katerina Nemcova as part of a Psychology Honours study at Victoria University under the supervision of Dr. Anthony Love from the Discipline of Psychology, College of Arts, Victoria University

 Project explanation

The proposed research aims to understand whether factors such as information needs, social support, self disclosure and optimism have an effect on the quality of life of women who utilize the BCNA online network. Participants do not have to be active members of the site but they must have created an account at some point during their diagnosis. This research is aimed to see how effective cancer focused social network sites such as the online network are and to investigate how women can benefit from such resources.

A better understanding of factors impacting the quality of life in women who participate on social network sites will aid developers to better understand which operations and implementations should be used when creating software for those diagnosed with cancer

 What will I be asked to do?

By agreeing to participate in this research you will be asked to complete a short online questionnaire. The questionnaire consists of 23 questions and should take approximately 10 minutes to complete. You will be able to complete this study on your own time, there are no appointments to attend for this study.

 What will I gain from participating?

Although there are no direct benefits for participants, it is hoped that through your participation, researchers will learn more about how breast cancer online support sites work and how they can be improved. This may benefit those in need of online support in the future. Whilst there is no direct compensation for your participation, you will be provided a concise summary of the results of the research within 12 months of completion of the questionnaire.

 How will the information I give be used?

All data obtained from participants will be kept confidential and will only be reported in aggregate format (by reporting only combined results and never reporting individual ones). Results of this study may appear in hard copy or electronic publication. All questionnaires will be concealed, and no one other than the researcher and supervisor will have access to them. The data collected will be stored in a safe and secure database at Victoria University until the required retention period has expired. Data will be stored in accordance to the Australian Code for the Responsible Conduct of Research.

 What are the potential risks of participating in this project?

Potential risk is minimal for involvement in this study. However, there is a small possibility that you may feel emotionally uneasy when asked certain questions about your cancer experience. Should you feel distressed, you may withdraw from the research at any time. Should you need to talk to someone about distress experienced as a consequence of participating in this research, contact details of a registered psychologist or Lifeline can be found below.

Should you need to talk to someone about distress experienced as a consequence of participating in this research, you may wish to contact Professor Jenny Sharples, Registered Psychologist on (03) 9919 4448, or email jenny.sharples@vu.edu.au or connect with someone on Lifeline by ringing 13 11 14.

 How will this project be conducted?

Female members of the Review & Survey Group, Breast Cancer Network Australia who are 18 or older who have been diagnosed with breast cancer will be invited to participate in this study. It is anticipated that a sample of approximately 100 women will be collected.

 Who is conducting the study?

Dr Anthony Love and Katerina Nemcova are both from the Discipline of Psychology, College of Arts, Victoria University. This study is also conducted with the full support of BCNA but is entirely independent of that organisation.

Dr. Anthony Love – Anthony.love@vu.edu.au 0403 479 198

Katerina Nemcova – Katerina.nemcova@vu.edu.au 0426 678 952

 Any queries about your participation in this project may be directed to the Chief Investigator listed above.

If you have any queries or complaints about the way you have been treated, you may contact the Ethics Secretary, Victoria University Human Research Ethics Committee, Office for Research, Victoria University, PO Box 14428, Melbourne, VIC, 8001, email researchethics@vu.edu.au or phone (03) 9919 4781 or 4461.

Take the survey here: https://vuau.qualtrics.com/SE/quality_life