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.

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.

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

 

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.

 

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.