The absolutely worst moment in Warren Tasker's caregiver journey as a spouse of a breast cancer patient was waiting for the results of a brain scan.
"My partner had a very aggressive form of breast cancer. They said they'd seen something on the latest MRI of her brain, which would have meant the cancer had spread. Fortunately, it turned out to be nothing, but I can tell you that day shook me to my very foundations," Tasker said.
"With cancer, it's just so scary. You have no control over it. You have no control over anything."
Throughout the year-long treatment-his partner, Gwen Borowski, recovered and has been cancer-free for 10 years-Tasker recalls most of all feeling alone.
"I saw a lot of partners of breast cancer patients also struggling, and there wasn't anything out there for support."
That's why he agreed to be involved with the development of an online psychosocial supportive intervention called MaTT (Male Spouse Transition Toolkit), which was developed by University of Alberta researchers to give caregiver spouses of breast cancer patients tools they need to cope.
And the need is so great for MaTT that, after garnering positive results from a recent feasibility study examining usability, the University of Alberta has made the toolkit publicly available at malespousetoolkit.ca.
"While we didn't acquire statistically significant results on quality of life improvements of MaTT, all the other indicators were so strong that the foundation asked us to make it available rather than wait to conduct more research," said lead investigator Wendy Duggleby, professor and research chair in aging and quality of life in the Faculty of Nursing.
"It was important to research feasibility in order to ensure spouses and partners would use the tool."
The initial study showed the vast majority of participants found it easy to use, and additional feedback will be used to modify the program.
"We were especially pleased to find that 79 per cent of participants would recommend the use of MaTT to other caregivers."
Currently, MaTT includes six sections with information and activities to be completed online by spouses (recommended over four weeks): about me, common changes to expect, frequently asked questions, resources, a calendar and important health information.
"The latter two components will be removed as the study participants didn't find them useful and we will expand the 'what are my partner needs' section," Duggleby said. "Qualitative data showed spouses found the activities, such as positive self-talk, were very beneficial."
Overall, spouses benefited from MaTT's activities related to the male caregivers' roles and how to address the needs of their partner, as well as information about what to expect in their changing roles and relationships.
"The biggest help of MaTT, for me, is to not feel alone," Tasker said. "There really is nothing out there for caregivers and partners. I had no information. No pamphlets. There was nothing online about what I was going through. I always said to my partner, 'You are the one going through cancer,' but there is a tremendous amount of stress on the caregiver.
"I felt alone most of the time. And bored. There's a lot of waiting around for appointments. My partner's positivity and her strength kept me going. But the disease calls on you to be selfless. It sucks the life right out of you. I'd get to work and barely get through the day, I was just so tired. It's an emotional and spiritual drain."
He added that if MaTT had existed at the time, he would have felt far less alone.
"Having a place to go to share feelings and exchange experiences, and to find more resources, would have helped immensely-so Gwen and I didn't feel like it was us against the world."
Though MaTT is a private intervention, it contains a mechanism that allows participants to voluntarily share their information.
"MaTT eases the burden and provides comfort by bringing a sense of community to you," Tasker said.
Duggleby first identified a gap in support for caregivers of breast cancer patients more than seven years ago.
"An oncology nurse told me how much distress these husbands were experiencing, and how there was nothing to help them."
So Duggleby joined forces with Kelly Struthers-Montford, a PhD candidate in the Department of Sociology, and Cheryl Nekolaichuk, a professor in the Division of Palliative Care Medicine, among others, at the Cross Cancer Institute and Alberta Health Services to develop an intervention that would be developed with caregiver input.
"Our hope is that the tool will be widely used, and perhaps serve as inspiration for other supports for caregivers of breast cancer patients," Duggleby said.
The study, published in Oncology Nursing Forum, was funded by the Canadian Breast Cancer Foundation, Alberta/Northwest Territories.