Caring for a partner with cancer may be one of the most testing and stressful experiences a person can have during their lifetime. An unspoken casualty of the cancer diagnosis can often be the loss of sex and intimacy between couples.
Now, an innovative study conducted by the University of Western Sydney looks at the lives of cancer carers and how they negotiate issues surrounding sexuality and intimacy in the context of caring for a partner with cancer.
The three-year Australian Research Council Linkage grant in conjunction with New South Wales Cancer Council is looking at the needs of cancer carers in an attempt to identify what types of support services are most effective.
The project has been conducted by Post Doctoral Research Fellow, Dr Emilee Gilbert, from the Gender, Culture and Health Research Unit in the School of Psychology. This sub-study consisted of a series of questionnaires which were completed by 131 cancer carers. In-depth interviews were also conducted with 20 carers.
Of the group surveyed, 80 per cent responded that the diagnosis of cancer had a detrimental impact on their sexual relationship with their partner.
Of the 43 male carers who responded, 86 per cent said that cancer had impacted on their sexuality. For women carers, the number was 76 per cent.
Dr Gilbert found that a lack of communication about sex and intimacy - both between the couple and with health care professionals was a major issue for carers.
"For some couples, the person with cancer was hesitant to discuss issues relating to sexuality and carers generally felt they did not want to put further stress on the partner with cancer by raising the topic," Dr Gilbert says.
"There was also a perception among some of the older couples in the study that sex was a taboo subject in the context of cancer."
With younger female participants in the study, issues such as whether to start a family, would their partner with cancer be around to help raise any children, or could they even get pregnant, were also raised as concerns
The study found the failure by health care professionals to discuss issues relating to intimacy and sexuality with a couple made it difficult for carers to feel they could legitimately discuss their feelings.
"Part of the unwillingness to raise the topics of sex and intimacy probably stems from not being given the license to talk about it. Those feelings left them feeling angry, upset and resentful of health care professionals," Dr Gilbert says.
"In many cases, because health professionals did not bring the subject up, carers did not feel they could bring it up. If it was discussed, it was only touched on or it was raised at an inappropriate time such as when the diagnosis was first given."
However, the study found that when the topic was raised by the health care professional and questions were asked and answered and the couple were not rushed, carers reported an excellent experience.
Dr Gilbert says the reason the subject of sex and intimacy was not raised more often by providers was because some may have felt it would be seen as either intrusive or disrespectful. There could also have been other issues such as gender, age and culture which may have been factors dissuading both sides from raising the issue, she says.
She also believes there is a need for support to be offered to people with cancer and their carers to facilitate communication about sexuality, and address sexual issues and concerns.
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