Why do some couples grow stronger when faced with a life-threatening illness, such as breast cancer, while others falter? That’s a question very much on the mind of York psychology Professor Karen Fergus these days as she tries to figure out how best to enhance couples’ coping abilities.
The twist is she’s reaching out to young couples through an innovative online program offering a professionally facilitated, couple-centred intervention that only existed in her imagination a few years earlier. Being the first of its kind, the program could set a clinical and scholarly precedent in delivering online support to distressed couples.
Fergus and her team were recently awarded a grant for the project, “A Multisite Randomized Controlled Trial of Couplelinks.ca: The First Online Intervention for Young Women with Breast Cancer and their Male Partners”, through the Canadian Breast Cancer Research Alliance/Canadian Breast Cancer Foundation Special Research Competition on Psychosocial Aspects of Breast Cancer. The degree of spousal support a woman gets has been shown to play a crucial role in her ability to cope.
Left: Karen Fergus
“We’re just finishing the pilot phase of the project,” says Fergus. “We think there is a benefit here but we can’t attribute it to the intervention at this stage.”
The pilot is recruiting 15 couples – it has 12 already – to test the possible benefits and feasibility of the program, and is funded by the Canadian Breast Cancer Foundation Ontario Region. The next phase, a randomized controlled trial which will start in the spring, should provide the answers she’s seeking. It will involve about 80 heterosexual couples in committed relationships from coast to coast, where the woman has been diagnosed with breast cancer at or before reaching the age of 40 within the last 36 months, and has fully or nearly completed treatment. Half of the couples will participate, while the other half will be assigned to a wait-list control group.
The reason for the focus on younger couples is they tend to experience more distress, face more life-altering challenges and endure a higher negative impact, than older couples with the same illness, says Fergus. Breast cancer can trigger premature menopause and loss of fertility, disrupting or changing plans for children.
Right: A series of screen stills where a couple demonstrates the "dos and don’ts" of communicating well. The video was shot and edited by York film students Jorge Manzano and Diana CaDavid.
There is relatively little in the way of resources for these couples and they are usually dealing with tight time constraints, making it difficult to commit to traditional forms of couple intervention.
“Relationships are thrown into flux during a crisis like cancer. Usual routines, patterns of communication and concepts of self and other in the relationship may change during the illness,” says Fergus. The question becomes “How can we help couples become more onside with each other – what we call dyadic coping. We’re trying to enhance their ability to cope as a collective. The more the couple is able to work together as a team, and the more able they are to face the disease with a unified front, the better able they are to adapt to the challenges of the illness.”
The study looks at what is considered optimal relationship functioning and then builds on it to give couples the tools they need to communicate effectively and to develop mutual empathy, understanding and listening skills, as well as awareness and responsiveness to each others’ needs. “The trick was taking what we know about optimal relationship functioning and how to foster it, and translating those principles into dyadic exercises that couples can do on their own with the guidance and support of a mental health professional,” Fergus says. Within that, Fergus is capitalizing on the technology to provide couples with a service that wouldn’t be as accessible otherwise.
Couplelinks is essentially an online workshop with six dyadic learning modules. A psycho-educational program, it seeks to strike a balance between flexibility, the couple can complete the exercises at their convenience, and structure, which is provided through regular online interaction with the facilitator. The idea is that the couples will complete one module a week over six weeks, although in reality it may take closer to eight weeks, says Fergus. For the first module, Celebrating Our Strengths, each partner enters 10 positive qualities about the other, then their strengths as a couple in general and specifically as they apply to breast cancer. The information is then transformed into a image of a tree signifying their individual and couple strengths and providing an opportunity for them to discuss what they value most about each other and the relationship, which on a day-to-day basis is often not explicit.
In the second module, Understanding Your Partner’s Inner World, each partner answers a series of questions about their own and their partner’s preferences and experiences, ranging from trivial – what is your partner’s favourite drink or opposite sex celebrity – to more serious topics regarding the cancer, like what each misses most about life before the illness. “Sometimes relationship schemata need to be revised in order to cope adaptively. This type of exercise can help partners better understand each other’s needs and experiences in this novel, stressful context so they don’t get thrown off course,” says Fergus. That can translate into a desire to take long walks together or a need to hold each other more.
Left: The Couplelinks Web site
Through these sorts of experiential exercises, the couples learn to understand each other better and increase emotional intimacy, mutuality and feelings of control, while decreasing distress, anxiety and depression. And, they learn how to move forward.
Within these modules they are given an opportunity to visualize and depict what the cancer represents to them, watch a video of a couple who has been through the ordeal demonstrating effective communication and listening "dos and don’ts", and construct a relationship line illustrating pivotal events or periods in their shared history. All of these exercises form the basis for discussion and mutual understanding, and offer hope for the future. The professional facilitator provides feedback, support, structure and a sense of safety, and answers questions online as they go.
“Basically, these are relationship enhancement exercises designed to strengthen the relationship bond," says Fergus. The main premise of the intervention is that resilient couple coping begins with a strong relationship. “We’re not suggesting that there is any issue with the relationship to begin with. But there are extraordinary demands being made of these couples both physically and emotionally, so the thrust of the intervention is to help couples meet these challenges as effectively as possible.”
Right: The weekly activities are broken down into time elements for the couples
Fergus, a clinical psychologist at Sunnybrook Odette Cancer Centre, hopes Couplelinks will become an accessible and cost-effective tool to help young couples, the less than 10 per cent of women who are diagnosed with breast cancer at age 40 or younger. “My team and I put a lot of thought into designing the site so that it appeals to both genders, not just women,” she says.
If it is successful, Couplelinks could be adapted to help couples facing any number of serious illnesses together, regardless of geographical location. They would just need an Internet connection and access to a computer to participate.
Internet-based support groups have already been shown to reduce social isolation, depression and trauma, while boosting feelings of empowerment and self-esteem. Couplelinks, online support for couples facing breast cancer, takes the concept into new territory.
For more information, contact Karen Fergus in York’s Faculty of Health at firstname.lastname@example.org.
By Sandra McLean, YFile writer