Intimacy and sex: The unspoken casualties of cancer

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 Australian study 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 study, conducted by the University of Western Sydney, 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 Dr Emilee Gilbert from the Gender,
Culture and Health Research Unit in the School of Psychology. One part
of the study so far 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.

Most of thew cancer patients and their partner-carers have concerns
about loss of intimacy and sex which doctors are not aware of, the
researchers suggest.

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.

The study is paid for by an Australian Research Council Linkage grant in
conjunction with New South Wales Cancer Council.

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