Finding Support to Cope with Heart Failure (HF)

Women living with HF needed support from others to help navigate the challenging ups and downs of their personal and medical journey. Family, friends and health professionals were important sources of emotional and practical support for women with HF. Women reported that family – mothers, sisters and husbands, for instance, who attended appointments and provided advocacy and encouragement, were huge supports during their HF journey. Friends also played important roles by visiting the women in hospital and providing advice and suggestions to ensure they received optimal care. Many of the women commented that HF does not just affect them but can also cause stress for their parents, children and spouses who feared that they could lose their loved one. 

Health care providers from the medical team played essential supportive roles through the connections they made with these women, the information they provided, and their compassion and kindness. In several cases, women told us that their medical team went above and beyond their usual duties to ensure that their patients received good care. Several women spoke about the importance of not just physical care but mental health care as well. Although challenging for some, those that were able to access psychological services found it very beneficial, while those who had no access to this type of support expressed frustration and disappointment with the care system. [See our page on Mental Health & Emotional Support].

Many women that we spoke with came to rely on other women with HF and patient support groups as they found comfort in connecting with someone who truly understood. While some women were wary of searching for support on the internet, several women found online groups hugely helpful.

 

Family and Friend Supports

Family were identified as important sources of support. Specifically, mothers and sisters were named as key sources of support for women with HF. They helped to navigate and coordinate care, take notes, advocate for care, and some even moved in to help look after their loved ones.

After several trips to the ER and being dismissed, Deb's mom stepped in to advocate for her.

Transcript

Eventually my mom heard via the grape vine that I was ill. So, she came by the house. Of course, by then I told them I’m never coming back as long as I lived. And she said to me ‘Oh no Deb – you are getting in the car’. Now […]

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Maya expresses her gratitude for her mother's advocacy efforts which has helped her learn how to manage her own care.

Transcript

So I think having my mother who number one advocated for me since birth and is a healthcare professional, has been lifesaving for me. She’s known how to advocate. She’s known how to navigate. She’s taken rigorous notes throughout all my care. She has notebooks of everything. So, I think […]

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Lise describes how her sisters' medical expertise lead to her being taken seriously.

Transcript

And my sister said right away ‘can you show me the results?’. And I had completely forgotten. It had only been the day before, but I had completely forgotten about those results. And then she looked at them and she’s a doctor. And she looked at them and right away […]

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Spouses and partners had to learn about HF and about the impact it had on their wives and partners. According to our participants, they typically stepped in to take over tasks or responsibilities the women could no longer do and provided much-needed support and advocacy as well. Women in this study told us that HF had an impact on their entire family, causing disruption in roles and creating fears and stress about the future.

Deb expresses her appreciation for her husband who has learned more about heart failure over time.

Transcript

We’ve been married over – we’ve been together over 30 – probably close to 35 years now. Married for 23 years and he is a gem. He’s wonderful, but he really had to grow to understand. He had to see for himself what my limits were. And were good. Were […]

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Jenny appreciated the support her fiancé provided but knew how difficult it was for him.

Transcript

He was amazing. I know he didn’t like to tell me how he was feeling about it. Even though I tried to get him to. I understand why he didn’t want to put that on me. Because I know he’s one to wear his heart on his sleeve, but he […]

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Finally, friends provided important sources of support, particularly for single women.

Kim talks about how having a friend sit with you in the hospital can make a big difference.

Transcript

My best friend she drove up from Cambridge to feed the dogs and get my clothing because I was wearing the same underwear for like 4 days. Yeah I didn’t shower. I wasn’t able to shower or bathe. Yuck. So ya it was … and she sat with me for […]

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Naomi gives thanks for her friends who continued to treat her as normal despite her illness.

Transcript

Like some of the friends that I’m so incredibly thankful for, were the ones that would still tell me about their day, even when I was like in the hospital – like my life is sucking and they would still tell me about their day. I’m like ‘thank you’. I […]

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Healthcare Provider Supports

Sensitive and thoughtful care from a woman’s medical team helped to transform difficult experiences into ones that made them feel valued and lifted their spirits. Women spoke of doctors and nurses who provided passes to leave the hospital or celebrated holidays and events with them while admitted to hospitals, helping them to cope and feel supported.

Susan2 recalls how nurses went above and beyond to help her celebrate her 5th wedding anniversary.

Transcript

My fifth anniversary was spent in September in hospital. And it was the nurses at that point were taking really personal ownership of me, as a daughter, and they asked if I would like to go out for my anniversary and I thought ‘what do you mean?’. So, they explained […]

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Actions by the medical staff made Amanda's hospital stay enjoyable and memorable.

Transcript

And we decorated my rooms for Christmas and New Years. Oh goodness what else? I also spent Valentines Day in the hospital too, so we’d decorate my room for Valentines Day that kind of stuff was as well. So, they made me – patient experience the most that it could […]

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Finding Emotional Supports

Many of the women with HF that we spoke to described how difficult it was to cope emotionally with their health journey. Those who were able to speak to psychologists or counsellors expressed how beneficial their services were to their overall mental health and ability to cope. Jenny says having a psychologist to speak to was “– amazing. I was so sad when I got discharged … she helped a lot”. Others wanted emotional and mental health support but were never offered it or could not afford to pay out of pocket for the care. Lillian asked her cardiologist, “I said so like, ‘Is there any support? Is there a support group? Is there whatever?’ Her doctor said no and advised that she seek help from other sources on her own. “I was kind of flabbergasted that there’s nothing.” Some women described their family members needing support, with spouses and children worrying that their mother or wife would die. For more detailed discussion of this topic see our page on Mental Health & Emotional Support.

 

Other Patients

Meeting other women or patients who are living with HF was seen by many of the women that we spoke to as extremely important source of support and resulted in women not feeling alone. Some women spoke about how much meeting peers with HF helped their mental health. Meeting others with HF occurred within the hospital, online through Facebook groups and other online platforms.

Jenny feels her life was changed after meeting someone with a story like hers.

Transcript

And then, through talking to me, doctor recommended Heartlife and it probably, like the doctor saved my life – they saved my mental health. It was so nice to talk to people that understood. I met my best friend – I guess my best friend now – my best ‘heart […]

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Joanne is thankful for the opportunity to speak to another patient about a device.

Transcript

When they had mentioned I would need a defibrillator – a pacemaker defibrillator – her husband also had one put in, I think a year before so at least I had someone that would that talked to me and spoke to me about it. I knew of – its not […]

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Naomi stresses the importance of online support and meeting other heart failure patients.

Transcript

I would say connect with someone, reach out to your doctor and see like – ‘can you provide some sort of mentorship something. Connect me with someone’. But like Heartlife, other Facebook groups all of those are very important. Like I made two super good friends that I would talk […]

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Last updated: 2024-08