Partners and Breast Cancer Report – Time to end the silenceJune 25th, 2013
NBCF has released a landmark report aimed at addressing the vast gap in information, resources and support which exists for male partners of women living with breast cancer.
Co-authored by CEO Carole Renouf, the report sheds light on the experience of male partners through case studies and a review of existing research. Issues which emerge range from a lack of information, inclusion and support through to changing relationships and concerns about employment, sexual intimacy and body image.
Ms Renouf said the report, titled Ending the Silence, highlights a significant gap in breast cancer research. As more and more women survive breast cancer, the lack of provision for the needs of their partners is becoming more and more critical to redress.
“The scientific literature recognises that there is a reciprocal relationship between the wellbeing of the partner and the wellbeing of the woman. It is therefore imperative that we start to treat partners as part of a unit of care,” Ms Renouf said.
“The problem is that men are incredibly hard to reach and reluctant to talk about their journey, their experience of being thrown into the caring role and their feelings about not being able to fix it. This makes it almost impossible for researchers to gather enough information to develop suitable resources, programs and support networks”, Ms Renouf stated.
Illustrating the problem, NBCF developed a simple online survey about the partner experience. While more than 400 surveys were sent, only six male partners were willing to participate. A further eight men agreed to indepth interviews.
“That exposed the code of ‘omerta’ that renders these men’s voices inaudible,” Ms Renouf said. “However, the men we did talk to showed us the depth and duration of their distress, which is in turn supported by the review of existing studies of cancer carers. These men found they had to do it alone.”
One gentleman who broke the code of silence was father of three, Brian Brady, whose wife was diagnosed with breast cancer in 2010.
“When you’re confronted with the fact that your wife has just been diagnosed with breast cancer, it can feel overwhelming. I tried to speak to family and friends – some tried to be helpful but they didn’t really know what to say or what to do or how to offer the support that I needed,” Mr Brady admitted.
There was help for my wife, there was information available on how to help the kids, but for me there was nothing.
Some of my mates wanted to take me out for a beer and show me a ‘good time’ to help me forget. All I wanted was someone to have a chat to but in that situation, mates will do anything rather than listen”.
Brian’s advice for men in a similar position is to try not to fix things and to accept being vulnerable.
Ms Renouf said, “Both the research base and the existing solutions are inadequate. We are publishing this report to encourage researchers to investigate the unmet needs of male partners, men to talk and participate, and clinicians to include the man as part of the unit of care. This is key to achieving the best outcomes for the woman with breast cancer”.