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Talking about the unmentionable

Incontinence is a taboo health issue in ethnic communities, reveals report. By Annie May.

Incontinence can affect people of all ages from all backgrounds, yet it still remains a taboo subject, with individuals finding it difficult to raise the issue with all health professionals.

Embarrassment, shame and the perception that it is a normal part of ageing continue to result in high levels of under-reporting of incontinence. But is this stigma and lack of understanding worse for particular groups in Australia?

Understanding of incontinence causes and treatments is low across all ethnic groups, found a recent Victorian report, Awareness of Incontinence in Ethic Communities, which looked at 10 particular groups.

As part of the study, focus group discussions were held with 218 participants, representing the Melbourne ethnic communities Arabic, Chinese, Italian, Greek, Macedonian, Polish, Russian, Spanish, Turkish and Vietnamese.

Of the groups, half - Russian, Turkish, Polish and Italian - reported that they did not know of the causes of incontinence. The most common explanations shared across the group for causes were it is due to ageing, due to the birthing process or due to weak muscles.

Others reported they thought it to be a kidney problem (Greek and Turkish), or caused by eating the wrong foods in pregnancy (Vietnamese), according to the report.

There was also a low level of knowledge of incontinence treatments, with participants in around half the groups (Greek, Russian, Macedonian, Turkish, Polish and Vietnamese) reporting they did not know of treatments, said the report, which was undertaken by the Victorian Continence Resource Centre (VCRC), in partnership with the Ethnic Communities Council of Victoria and Monash University School of Nursing and Midwifery.

"Around one-third of groups mentioned exercise as a treatment although many were unsure of which type of exercise - some referring to a 'breathing exercise' rather than specific pelvic floor muscle exercises," the report said.

Has has been found with the broader community, many participants in the study viewed incontinence as impacting negatively on an individual's quality of life. People commonly reported they would limit participation in social activities because of incontinence.

Negative impacts associated with incontinence were most concerning for Muslim men and women who reported that incontinence potentially limited their religious practice, in particular carrying out prayer rituals due to being 'unclean' and therefore in their belief, not fit for prayer.

Said one participant, an older Turkish man: "Methods of praying would be affected... in my religion one has to be cleansed and be clean and concentrate... in terms of concentrating the problem of incontinence would be quite difficult... you would have to cleanse yourself again and again."

A need for repeated washing before praying was reported among Macedonian, Turkish and Arabic participants.

Communication and language barriers were perceived to limit people's access to information and support services. In some languages, there was either no term to describe 'incontinence' or the terms used were negative. To address this, the report recommended that a common glossary of incontinence-related terms be developed and translated into different languages.

"Incontinence is a health issue that can affect people of all cultural backgrounds," said VCRC spokesperson, Susan McCarthy, continence nurse advisor.

"Incontinence is not an inevitable part of ageing. It can be treated and in most cases cured. It's important that information and education is accessible to all people in the community, including those from different ethnic communities.

"Strategies that would improve communication about the prevention, treatment and management of incontinence would go a long way to improving knowledge and understanding of incontinence in ethnic communities."

The VCRC is urging community, health and aged care staff working with people from different ethnic communities to raise the issue of incontinence discreetly and provide information and education in the person's preferred language.

It says the report highlights that the provision of information about incontinence has not been adequate to ethnic communities.

"The way forward is to ensure knowledge and language is not a barrier for individuals to make informed decisions. Education and information about how to prevent incontinence and its management options must be provided in formats that people with low English proficiency can access and understand," the report concludes.

Awareness of incontinence in ethnic communities

People from culturally and linguistically diverse backgrounds face additional barriers in accessing services and information about incontinence.
* Language and communication barriers limit making informed choices
* Knowledge about incontinence (causes and treatments) is low - many people do not know about incontinence or the knowledge they have is not useful knowledge
* A common belief exists that incontinence is an inevitable part of ageing - is unavoidable in old age and nothing can be done about it
* Fluid restriction is a common strategy to manage incontinence - however, most are unaware of the consequences
* Traditional medicines or remedies are not consistently practiced in ethnic communities
* Understanding of which exercise is good for this problem is limited - some suggest a 'breathing exercise' rather than pelvic floor muscle exercises
* Many people limit participation in social activities as a result of incontinence
* Muslim men and women may restrict religious practice due to incontinence
* Incontinence information should be provided in people's preferred language
* Some prefer to see a doctor who speaks their language
* Some women may only discuss the issue with other women but never with males including husbands, sons or male interpreters.

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