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Behind the research: opening up conversations about sex and intimacy after cancer

Sex and intimacy after cancer treatment can be a challenge for many couples. A Sunnybrook research project aims to help couples overcome that challenge through facilitated discussions, and hopes to normalize sexual health conversations as part of cancer care.

The project, led by psychology PhD candidate Molly McCarthy and psychologist Dr. Karen Fergus is based on a previous study that interviewed people who had a colostomy after colorectal cancer as well as their partners. That study found that nearly all of the couples identified intimacy and sex as something that changed significantly as they adjusted to life after colostomy. A colostomy is a surgery that connects the colon to the abdominal wall to allow for the drainage of fecal matter. A colostomy bag sits outside the body to catch the waste.

The new project invites people who have had treatment for bladder or colorectal cancer and are living with a temporary or permanent ostomy and their partner to participate in a two-part online intervention. The intervention provides couples with the opportunity to have therapist-facilitated discussions about the sexual and intimacy changes they have experienced as a result of the cancer and ostomy.

Here, Dr. Fergus and Molly answer some questions about their research project and how they hope it helps patients and their families.

What led to your interest in research in this area?

Colorectal cancer is the third most diagnosed cancer in Canada. Treatment often involves a temporary or permanent ostomy – which is an external bag that catches patients’ urinary or fecal output. While research about sexual health has been conducted with respect to breast and prostate cancers, relatively little research has looked at the experience of colorectal and bladder cancer patients. While individuals can certainly go on to lead fulfilling lives with an ostomy, adjusting to the ostomy can be challenging and often involves changes to both patients’ and partners’ lifestyles in the recovery phase of the illness that most other cancer sites don’t experience. For these reasons, we felt that more research was needed with these individuals and their partners.

For our first project, we interviewed 11 couples about many aspects to living life as a couple following colostomy surgery. Ten out of 11 of the couples told us that they’d experienced significant changes to their sexual health and intimacy. They said they would have appreciated more information and conversations about this with their healthcare team. They wanted more support.

Hearing this, we wanted to take the project a step further and try to find ways to help couples adjust. We want to increase accessibility to psychological support targeting the sexual changes these couples face.

Through those initial discussions and your more recent work, what do you think contributes to these changes in sexual health and intimacy? 

We heard about body image changes, fear of leakages, lack of spontaneity, changes in physical sexual functioning, and worry about their partner seeing or geting near to the stoma. For the partner, there was fear of hurting their loved one.

What we also found was there was a lot going unsaid between the couples, and that silence was contributing to the relationship changes. During our initial interviews with couples, both patients and partners said they were hearing a lot of the issues and concerns from one another for the first time. They were learning a lot from each other during these conversations. This learning through conversation is what inspired the development of our intervention.

The new phase of research involves an online intervention. Why online?

The purpose of this research is to evaluate whether a two-session intervention that gives couples the chance to have facilitated conversations about the changes they have experienced in their sexual health and intimate relationship can help enhance their ability to cope and adjust to the changes.

Thanks to the ease and convenience of internet communication, it is quickly becoming a popular way to deliver health care services. We offer our two-part intervention via secure and private online videoconferencing so that the couples can participate from the comfort of their own home. By making use of online technology, this research has the ability to increase access of valuable services to colorectal and bladder cancer survivors across Ontario.

What do you hope this research means for patients and their families?

Unfortunately sex does not get a lot of attention in cancer care. We’ve heard from patients that they feel bad that they are concerned about sex when there’s so much else going on; they worry that it’s not appropriate to talk to their circle of care about their concerns. We want people to know: sex and intimacy changes after cancer treatment is a common concern and a normal, valid concern. It’s part of your overall health. And it’s something that you can and should get help for, if you need help.

We want to increase accessibility to this kind of support. While we won’t perhaps resolve all of the issues in our two sessions, we want to open up a conversation and get couples connected with other resources, if needed.

The sessions are facilitated conversations for mutual learning and to identifying their strengths as a couple that they can draw upon to help them cope. The focus is intimacy and sexual health – not penetrative sex. Cuddling. Being close to each other. Touching each other. We work with each couple’s goals. We encourage them to share their concerns, and open up the conversation. The motivation is on growing intimacy and closeness as a couple.

You have another portion of this project that involves healthcare providers. Can you explain that part?

We are also interviewing healthcare providers about sexual health and intimacy to find out if, how and when these conversations come up with their patients.

How can we normalize these conversations so people feel comfortable asking and getting help? Maybe better resources are needed or training for the healthcare team. So we are interested in hearing from healthcare providers as well so that we can identify any barriers that they face in initiating conversations about sexual health and intimacy with their patients.

This study is open to individuals who have an ostomy (temporary or permanent) after colorectal and/or bladder cancer and are at least 1-month post active treatment and are in a committed relationship. Couples must live in Ontario and have access to the internet in a private space (webcams can be provided).

Do you want to learn more about this study or participate as a patient or cancer care provider? Please email: molly.mccarthy@sunnybrook.ca

About the author

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Alexis Dobranowski

Alexis Dobranowski is a Communications Advisor at Sunnybrook.

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