The Breast Cancer Care of Western Australia (BCCWA) has formed a partnership with Edith Cowan University (ECU) to develop the exciting new research project referenced above. The project will aim to build an online community via Internet technologies that will provide professional advice, information and support for people who have been diagnosed with breast cancer their families, and friends.
You will be able to login to the 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 will enable you to participate in a way that suits you: you can chat online, participate in discussion groups, host blog pages, and listen to podcasts, and post videos or photos. During the research project a health care professional will be introduced to provide advice, information and support for a period of 3-6 months, and links to relevant breast cancer information sites will be available.
Purpose of the Research
The research project aims 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, Purple Boot Brigade (PBB) with that of members of an online community site, before during and after the introduction of the health care professional to the community. Both sites are websites for people who have been diagnosed with breast cancer their families and friends and are sponsored by BCCWA.
Type of Research Processes
The members of both websites (BCCWA Purple Boot Brigade (PBB) social network and the online community) will be invited to attend focus groups, interviews and to complete online surveys to inform all stages of the project. It is probable that not all people willing to be involved will be able to take part. None of these research activities is compulsory and invited participants can choose to take part in none, one or more of these research activities. Apart from your time spend online voluntarily; the interview and survey research components together should take no longer than 2½ hours. However, if you are willing to be involved in a focus group discussion then please allow another hour or so of your time.
As a person diagnosed with breast cancer or a family member or friend who has used one or both of the sites, 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 involvement with the breast cancer journey.
Your participation in this 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 then you may do so then all of the services you receive through the organization and its websites will continue and nothing will change Even so, if the interview or group discussion has 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 is provided if you would like to speak to a counsellor for support during or following any of the research processes.
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/or in the Purple Boot Brigade social network. 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.
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.
Participation in the online community, both before and during the period the Breast Care Nurse is onsite, will enable you to obtain information, advice and support to which you may not previously 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
The BCCWA and ECU respect your privacy and have embraced the national Privacy Principles; therefore, the identity of participants in this 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 we get 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
This proposal has been 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:
Ms Kim Gifkins
Research Ethics Officer
270 Joondalup Drive
Phone (08) 6304 2170
If you have any questions or wish to know more about the research project, please contact one of the following people:
Project Coordinator/ PhD student Edith Cowan University
(W) (08) 9370 6560
Edith Cowan University
(08) 6304 5459
Edith Cowan University
(08) 9370 6204
Breast Cancer Care of WA
(08) 9324 3703
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 Coordinator/Counsellor
Phone: (08) 9324 3703
Royal Perth Hospital
Specialist Breast Nurse Counsellors
Phone: (08) 9224 3321
Breast Cancer Clinical Psychology Service
Phone: (08) 9224 1629
24 hour Telephone Counselling - Call 13 11 14
Phone: (08) 9261 4444