A guide to positive communication with intersex patients

A guide developed by McGill University researchers aims to improve the experience of intersex people in the healthcare system by informing professionals on how to communicate effectively with them.The guide, "Towards Affirmative Health Communication Regarding Intersex People in Canada," the first of its kind in the country, offers tools for healthcare providers to better connect with intersex people and their families."There is a real need for them to regain trust in the healthcare system, caregivers and so on. The relationship wasn't healthy until recently. There has been improvement, but there is still a lot of room for improvement," explained the project's lead researcher, Yann Joly, professor in the Department of Human Genetics at McGill University.Healthcare professionals are not trained to interact with intersex people, says Joly, who is also the director of the university's Centre for Genomics and Policy.“It’s really a little-known subject; only certain categories of specialists are somewhat familiar with it because they see intersex people more often. But even these specialists have often learned on the job, as they say, through experience, rather than through reading, etc., or formal training,” said Joly.Yet, more than 1% of the population could be intersex, the professor points out.Joly explains that the term “intersex” doesn’t refer to a single condition, but rather “a generic term that designates a range of variations in physical sex characteristics.”“We have physical sex characteristics that don’t quite correspond to what we would expect for someone of the male or female sex. There can be differences or combinations of sex characteristics.” “It affects, for example, the reproductive organs, the external and internal genitalia, the hormones we produce, etc.,” explained Joly.To create the guide, the researchers consulted with the intersex community in Canada, collaborating with organizations such as Intersex Canada and Egale.Joly's team also spoke with healthcare professionals, who often had good intentions but lacked the resources to deal with situations involving intersex people.“It’s really meant to be a useful clinical tool for healthcare professionals,” the professor stated, adding that the guide is written in simple language and is designed to be short read. Positive communicationProfessor Joly asserts that in Canada, there are “far fewer” forced surgeries for intersex people than before.“But there are still, for example, far too many situations where parents who learn they have an intersex newborn feel poorly supported by the system, don’t find the healthcare professionals’ response adequate, and don’t find the care experience adequate,” he explained.“The problem is that, afterward, when you have a bad experience like that, you tend to avoid care. We know that this can marginalize communities, and that’s what we want to avoid.”The guide therefore emphasizes the importance of supportive and positive communication from healthcare professionals, Joly stated. He explained that parents often learn that their child is intersex prenatally or at birth, times when they can feel especially vulnerable.“It’s important at that moment, when the communication is made, that parents feel supported and that the news is delivered to them in an encouraging way, not one that frightens them or suggests inappropriate options, such as surgery when it’s not necessary,” explained Joly.The professor indicated that some conditions require surgery for significant and urgent health issues.“Of course, in those cases, we will do it. But in other cases, we do encourage parents to wait, to give the child the chance to make their own choices as they grow up, for example,” he clarified.“And then there’s also a whole language to use that makes intersex people and their family members feel respected, that their preferences and the specificities of intersexuality are taken into consideration,” said Joly.Notably, intersex people may also learn they are intersex later in life. For example, a person seeking help to understand why they are infertile might learn they have variations that cause their infertility.This article has been translated from its original French.

A guide to positive communication with intersex patients

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