Finding Information & Cardiac Rehab

Women told us that they wanted information about their heart, their condition and what might have caused it, what risks they face in the future and how to live a healthy life, moving forward. Trusted information on these topics helped women cope with worries and fears and helped them take control of their recovery process. Cardiologists and family doctors were usually the primary source of initial diagnostic information; they often explained HF diagnosis to the women we spoke with and discussed potential causes and future treatment plans. However, some women found these discussions too brief and limited, making it difficult to get answers to their questions and to find relevant information. Many women turned to their own networks to look for information and support and searched the internet to locate information about heart failure and about support groups. [See our page on Finding Support]. Several women spoke about how cardiac rehabilitation programs in particular were very helpful, offering formal patient education. Other women became volunteers with cardiac support and research organizations as a way to get more information, but also to contribute knowledge and support for other women with heart disease.  

Having grown up with heart problems, Lori became a nurse to help other heart patients who were afraid and needed a bit more information to understand their condition. “They didn’t quite understand it and they just – they needed a little bit more to help them understand about their heart failure, about their heart issues. And so I wanted to become a nurse because of that and because of all the healthcare staff that looked after me.”

 

Searching for Answers

We spoke to women who wanted to understand the causes of their heart condition so that they could protect their children or themselves against future risks. Some wanted to understand things at a very detailed level so that they could advocate for care and treatment that best suited them. Jennifer wanted to know if she could pass on a genetic type of cardiomyopathy to her children so requested genetic testing:

“And I guess fortunately, he decided that all of my results and my background … made me not qualify on the BC genetic, I don’t know the, the factors that you need to be tested for genetic based cardiomyopathy. And I was kind of disappointed about that because I, you know, because I have a keen interest in these new treatments and then research. But it kind of means that I likely have I probably don’t have a genetic type of cardiomyopathy. So, I can’t luckily have provided that gene to my children, which was a big concern for me.”

 

Sources of Information

During our interviews, women shared how they have been resourceful in finding information, working through local doctors, hospitals, in addition to online information and support groups such as HeartLife.

 

Cardiac Rehabilitation Programs – Intervention and Information

About half of the women that we spoke to attended some form of formal cardiac rehabilitation program, offering information, intervention and some support. Some women were very strong advocates, like Lois, who felt a referral to cardiac rehab should be “automatic” if there is heart failure diagnosis. Women had favourable comments about what they learned and their improved abilities afterward. The cardiac rehabilitation programs often included heart education, diet, exercise, pacing and monitoring symptoms during activities, but did not always offer information or support services to manage anxiety and stress. Some women expressed concerns about the appropriateness and variability of content and access.

Lillian also spoke positively about her rehab experience but said “What I’ve heard from Canadian women with heart conditions is that cardiac rehab varies greatly from place to place. Here – you can have it for three months and then that’s it. It’s not based on evidence of what works – it’s based on how much resources they have available and supply and demand.” Her cardiac rehab program was time-limited and did not offer mental health support or dietary counselling with a registered dietician.

 

No One was Like Me

Several women commented on the fact that their cardiac programs did not seem tailored or responsive to the needs of younger women. Lois, Jennifer, Tara and Susan2 commented that most other participants in their rehab programs were much older. Susan2 said “no one was like me” and Tara said she felt ‘unseen’ and as though there was no support for the concerns of younger women.

 

Lack of Access to Rehab

Limited access to rehabilitation programs, particularly during the pandemic, was also raised by some of the women. Lois noted that she had to “really push” her physicians to refer her to cardiac rehab and once there, noticed there were only a few other women, or that they did not ‘stick around’ in the program. Others had trouble finding programs that would accept them.