Research Information

Learn more about the Click, how it started and the important research we support.



Introduction

 Breast Cancer Care WA formed an alliance in 2008 with Edith Cowan University (ECU) to develop research projects in relation to professional advice giving through online communities. In 2009, the research team received funding through an Australian Government’s Australian Research Council (ARC) Linkage Project Grant for a three year research project titled ‘Developing guidelines for integrating social networking technologies and professional advice-giving in constructing an online community for supporting breast cancer survivors’. This original project’s funding was made possible through the generous donations of Steel Blue’s Purple Boot Brigade as an industry funding partner.

The original research project and other related ongoing research, aim to build and maintain an online community via internet technologies that provides professional advice, information and support for people who have been diagnosed with breast cancer and their families, friends, supporters and carers.

During the initial research project a Specialist Breast Care Nurse was introduced to provide advice, information and support and provide links to relevant breast cancer information. This service continues to be provided to Australians via The Click and ongoing Steel Blue Purple Boot Brigade funding at no charge to the members.

You are now able to login to this secure, members only website, to share your experiences with other people who understand the experience of breast cancer or who might benefit from your understanding. This unique site enables you to participate in a way that suits you: you can chat online, participate in discussion groups, host blog pages, ask questions and respond to Forum posts and upload videos or photos.


Purpose of the Research

The initial research project assisted to develop guidelines to support the integration of professional advice giving within an online community by comparing the engagement and interaction of members of a social networking site, with that of members of an online community site, before during and after the introduction of the health care professional to the community.

Additional research may occur using The Click’s data from time-to-time and details of this research will be posted here for member’s information.


Type of Research Processes

Members of The Click will be invited to attend focus groups, interviews and to complete online surveys to inform all stages of research conducted on the site. It is probable that not all people willing to be involved will be able to take part. None of these research activities are compulsory and invited participants can choose to take part in none, one or more of these research activities.


Participant Selection

As a person diagnosed with breast cancer or a family member or friend who has used The Click, you have been invited to participate as you can contribute much to our understanding of the need for, valuing of and use of online professional information and support during your breast cancer journey.


Voluntary Participation

Your participation in any specific research is entirely voluntary. It is your choice whether to participate or not. If you choose not to participate or choose to participate then wish to withdraw at any stage please be assured that you may do so and all of the services you receive through the organisation and its online community will continue and nothing will change. Even so, if the interview or group discussion have already taken place, you can no longer 'stop your participation' but you can request that the information provided by you is not used in the research study and we will withdraw it. A ‘Who to Contact sheet’ will be provided if you would like to speak to a counsellor for support during or following any of the research processes.


Procedures

We are asking you to help us learn more about online social networks and communities for those people diagnosed with breast cancer, their family and friends, in particular, about the inclusion of information from a health professional as part of community forums. We are inviting you to take part in this research project. If you accept, you will be a research participant in an online community supported by Breast Cancer Care WA and Edith Cowan University. People who have agreed to be part of this online research project may also be asked to contribute to a survey or participate in a focus group and/or interview.


Risks

We are asking you to share with us some very personal and confidential information, and you may feel uncomfortable talking about some of the topics. You do not have to answer any question or take part in the discussion/ interview/ survey if you don't wish to do so, and it is fine to choose not to do so. You do not have to give us any reason for not responding to any question, or for refusing to take part in a survey, interview, or focus group.


Benefits

Participation in the online community enables you to obtain information, advice and support to which you may not previously have had easy access.

Your participation will help us find out more about online communities, and how professional advice giving can be integrated into such communities. This will benefit those with breast cancer and their supporters, and other people with health problems, in the future.


Privacy and Confidentiality

Breast Cancer Care WA and ECU respect your privacy and have embraced the national Privacy Principles; therefore, the identity of participants in any research will not be disclosed.

Focus Group - You must be aware that in a focus group we will ask you and others in the group not to talk to people outside the group about what was said in the group. We will, in other words, ask each of you to keep what was said in the group confidential. Maintaining this confidentiality of is very important. You should know, however, that we cannot stop or prevent participants who were in the group from sharing things that should be confidential.

People will not be identified in any published works. If the results of the research are to be published, code names (pseudonyms) will be used and any identifying details will be disguised. Interviews and focus groups will be audio recorded and the researcher will refer to your comments under your code name. The digital records will be kept under password (known only to the research team) on the researcher coordinator’s university supplied computer hard drive. Paper records will be kept in a locked filing cabinet at the university and all records will be destroyed five years after the research is completed.


Sharing the Results

The knowledge that the research team gain from this research will be shared with you and your community. Participants can request a summary of the results and we will also publish the results so that other interested people may learn from the research.


Who to Contact

The original research proposal was reviewed and approved by Edith Cowan University Human Research Ethics Committee, whose task it is to make sure that research participants are protected from harm and that all research offers public benefit. If you have any concerns or complaints and wish to speak to an independent person, please contact:

Office of Research and Innovation
Building 1B
270 Joondalup Drive
Joondalup WA 6027
Telephone: (61 8) 6304 2721
Facsimile: (61 8) 6304 5044
Email: research@ecu.edu.au


If you have any questions or wish to know more about the initial research project, please contact one of the following people:

Cynthia Witney
PhD student Edith Cowan University
Phone: (W) (08) 9370 6560
Email: c.witney@ecu.edu.au

Dr Leesa Costello
Supervisor
Edith Cowan University
Phone: (08) 6304 5459
Email: l.costello@ecu.edu.au

Prof Lelia Green
Chief Investigator
Edith Cowan University
Phone: (08) 9370 6204
Email: l.green@ecu.edu.au

Vanessa Bradshaw
Partner Investigator
Breast Cancer Care of WA
Phone: (08) 9324 3703
Email: vanessa@breastcancer.org.au

If you would like to speak to a counsellor during or following any of the research project activities please contact one of the following organisations:

Breast Cancer Care WA
Support Services Manager/Counsellor
Phone: (08) 9324 3703
Email: cathie@breastcancer.org.au

Royal Perth Hospital
Specialist Breast Nurse Counsellors
Phone: (08) 9224 3321

Breast Cancer Clinical Psychology Service
Phone: (08) 9224 1629

Lifeline WA
24 hour Telephone Counselling - Call 13 11 14
or
Phone: (08) 9261 4444
Email: lifeline@lifelinewa.org.au