Carole Renouf Male Partners of Women with Breast Cancer Interview

Carole Renouf Male Partners of Women with Breast Cancer Interview

Australia's leading breast cancer research charity, the National Breast Cancer Foundation (NBCF), has released a landmark report aimed at addressing the yawning gap in information, resources and support which exists for male partners of women living with breast cancer.

Co-authored by NBCF's 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."

Illustrating the problem, NBCF developed a simple online survey about the partner experience. While more than 400 were sent, only six male partners were willing to participate. A further eight men agreed to in depth 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."

The Ending the Silence report is available to download from www.nbcf.org.au

Interview with Carole Renouf

Question: What inspired NBCF to release the landmark report aimed at addressing the gap in information, resources and support which exists for male partners of women living with breast cancer?

Carole Renouf: I started in the role of the CEO at the National Breast Cancer Foundation (NBCF) two and half years ago; I did not come from within the breast cancer movement and I began to get the impression, quite rightly, that the focus of breast cancer has always been on the women. I wondered if perhaps there might be a number of people around the women that would be deeply affected and for whom there didn't seem to be much support out there. Male partners were one of the first groups that I felt that for and we began the report to find out if that was indeed the case and it was.


Question: Can you tell us about the report, Ending the Silence?

Carole Renouf: Ending the Silence is made up of two sections; one part is a review of the scientific literature such as studies that have been done into the needs of male partners in breast cancer and what they tell us, over the past twenty years. The other part is a series of surveys and interviews that I conducted with men, who were willing to come forward, there were not very many of them. Then, essentially the report looks at the pattern between the two, the interesting thing is that what the men told us is very much mirrored in the studies and proves that it is true.


Question: What did you learn from the online survey and interviews about the partner experience?

Carole Renouf: Not many men were willing to come forward and that is interesting in the fact that it mirrors what you read in the scientific studies; one of the main hurdles in this area is the vicious circle that men won't talk and they won't come forward for research therefore research can't be done and therefore the tools and resources that men need cannot be produced.


Question: What is the main aim of the Ending the Silence report?

Carole Renouf: The aim of the report is threefold, first of all to encourage men to open up, to talk, to seek health and use the resources listed in the report as well as participating in research. The NBCF has an online database of people who have registered their interest in being a part of research studies titled -Register4' and the website is http://register4.org.au we are encouraging men to sign up.

Secondly we want to encourage researchers to do more investigation into this area. Thirdly we'd like to encourage health professionals to consider the man as part of a unit of care, the couple is a unit of care and they need to really include the male and give them as much information as possible.

Question: What types of experiences are common for male partners of women living with breast cancer?

Carole Renouf: It's not all doom and gloom in the sense that scientific literature does show that there is a proportion of couples that come through breast cancer and emerge stronger than ever. But that is not necessarily the case for everybody at the other end of the spectrum there is about 10% of couples that come through breast cancer broken and the relationship breaks up. We have tried to focus on the ones in the middle, the majority of people, namely men who are thrust into the cancer caring role at the moment of diagnoses. It's difficult for men and they struggle to cope because they haven't done it before and they don't know how to do it which causes high levels of stress, anxiety and depression. Men worry a lot about employment and finances as they don't have enough carers leave to cover the time they need off work and those types of issues. There is a lot of impact in terms of the relationship itself as it changes, forever and that processes isn't always negotiated very well.


Question: How are these issues addressed?

Carole Renouf: In the Ending the Silence report we provide details of what is out there, at this stage. We are also calling for the need to produce more.

It's interesting, as the title suggests, the report, Ending the Silence, serves its purpose just by ending the silence because a lot of this goes back to the fact that men won't talk to their partners, each other or family. Sometimes the odd man, that we spoke to, said that they found a mutual person such as a GP or counsellor to talk to which helped but it's important to open the conversation and for men to be reassured that the difficult feelings that they're having through this journey are normal and that they need to find support.


Question: How should friends and family approach the partner of a women who has been diagnosed with breast cancer?

Carole Renouf: It was very interesting in interviewing the men; you may think that the best kind of support comes from mates but also from family. Even, sometimes with the case of family, some men talked about the fact that either the family didn't want to get involved or didn't understand and were not help or that they overwhelmingly got involved and pushed the man aside, a bit and they didn't like that either.

Family and friends should definitely approach but approach with care. I think the approach with care part is about asking the male partner -What help can we give you? Do you want us to bring casseroles? Do you want us to live in your house? Do you want us to take the kids away for a holiday?' because I don't think there is any one size fits all option. It all depends at what stage the partner himself is in, in his own journey through breast cancer, at that time as that will really determine what they need.


Interview by Brooke Hunter