QUT research study – Share your thoughts about new breast reconstruction technologies

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Comments

  • j9kj9k Member Posts: 98
    Hi @Lisa_BCNA, I just did the survey. I also didn't have a breast care nurse. It took my third occurence this year, 13yrs after my first BC before I saw one and then all she did was bring in bras and give me brochures after my surgery. Also another option for recommendations should have been 'wouldnt recommend to friend' which procedure. I was too frightened of reconstruction so didn't have it and wouldn't recommend something that crucial if I had not experienced it and wouldn't anyway. I would support friend to find out all info to come to own decision that was right for her. And I have concerns about the new procedure and the possibility of regenerating BC. Granted I don't know anything about it but that would be a major concern for me. @arpie ; also think they are trying to assess risk taking - would you gamble on a potentially better outcome or play it safe. Such as would you go for a new reconstruction procedure or go with the tried and true. Without room for comments, these surveys only get part of the story and a very narrow profile of people and their info. I guess it's early days and they want a quick reference point but it's frustrating as a participant when you can't qualify an answer such as - I didn't have a BC nurse. 
  • arpiearpie Mid North Coast, NSWMember Posts: 2,939
    Well said, @j9k.   Much more eloquent response than mine!  ;)    Yes, I went with the 'tried & tested' method rather than trying new stuff in that question

    My experience with the BC Nurse was the same as you - my surgeon's nurse, not a 'specific BC nurse'.  Once I'd had the surgery (got the bra & the brochures) she took 1-2 weeks to get back to me with any query and then nothing.  I wasn't impressed.

  • j9kj9k Member Posts: 98
    I know they are busy @arpie but surely there could be a more consistent experience with them. Fortunately I had a wonderful surgeon who gave me her home number and told me to call anytime if I was concerned about anything. She held my hand before I was wheeled into surgery. I guess I don't know what I missed out on by not having a good BC nurse but my surgeon was my lifeline. I was lucky. 🙂 
  • arpiearpie Mid North Coast, NSWMember Posts: 2,939
    WOW! That is awesome,@j9k - My surgeon was lovely but not THAT good!   ;) 

    I just can't see how most of those questions having ANY relevance to Breast Reconstruction.   :( 
  • Lisa_BCNALisa_BCNA Staff Posts: 140
    edited December 2018
    Hi all, thanks so much again to everyone for providing feedback about the survey. We've been in touch with the research team and Dr Steve Whyte has asked that we share this with you.

    -------------------------------------------------------

    Firstly to the more than 450 women who have already participated in the study thank you so much for taking the time to be part of the survey. The hardest part of studying human behaviour is getting people to participate and provide information. The research team really appreciates your support.

    Secondly thanks for your feedback on response/questions, either by directly contacting me via email or by commenting on the BCNA post. We really appreciate your feedback (information – this is what we are trying to capture, information on women’s experiences through the breast cancer journey), all of which will be incorporated into the study to the best of our ability.

    I’m sorry if any participants felt parts of the survey were restrictive, we tried to do the best we could with the survey trying to capture as much information as we could. Obviously online surveys (Quantitative research) are far more restrictive than one-to-one interviews (Qualitative research) and we were restricted by our limited funding and went with an online survey to try and get as much info from as many breast cancer patients as we could.

    Thanks to all who have taken the time to reach out and be part of our study, we really appreciate it. The study’s results will be made freely available when completed in early 2019. For those who participated and selected this option you’ll be sent an anonymised breakdown of the descriptive statistics directly via email.

    Please feel free to share the study via any social media or breast cancer charities/organisations you are associated with, or with anyone else you think may like to participate. The study will be open for about another 7 weeks until Jan 31st 2019.

    Thanks for your help, wishing you all a happy and safe Christmas/NY holiday break,

    Steve


    Dr Stephen Whyte
    Postdoctoral Research Fellow
    School of Economics & Finance | QUT Business School | Queensland University of Technology
    Email: [email protected]


  • primekprimek Broken HillMember Posts: 5,081
    I also completed. My breast reconstruction was done by my breast surgeon. This survery assumes it is a plastic surgeon. Other than background or finances and weight I believe it lacked the opportunity for much more depth in the survey. I guess it wanted to figure out who was willing to trial something new without evidence. 
  • FlaneuseFlaneuse BrisbaneMember Posts: 849
    I have just completed the survey, though at one point I tried to find a way to exit it. The survey made me ANGRY. There were not sufficient response options. Too many assumptions - e.g. that reconstruction is done by a Plastic Surgeon. In many public hospitals, it's by a surgeon. The behavioural attitude questions about investment portfolios and financial advisors made me FURIOUS! Perhaps it's just the current political climate heightening my sensitivities to those kinds of issues.
  • AnnskiAnnski Blue Mountains, NSWMember Posts: 103


    I thought this survey was not well designed. There were a lot of assumptions. As many have noted, not everyone has a "breast care nurse". The amount of communication with a surgeon can be very variable and this makes a huge difference. The decisions people make about stocks and shares seems irrelevant to this issue although the actual cost of the procedure would beimportant. I would not think this is the right way to find out whether people would be receptive to 3-D technology for breast reconstruction. Many do not/would not want the same breast. Others may feel there is no need for breast reconstruction at all. The lack of any opportunity for feedback on the survey was annoying.

  • FlaneuseFlaneuse BrisbaneMember Posts: 849
    I agree with @Annski. Overall, a poorly designed survey. Any findings drawn from it about likelihood to choose new technology for reconstruction would not be valid.
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