Mental Health – a Recurring Theme

 

Emotional Reaction to Heart Failure (HF)

In our interviews with women, mental health services and supports were consistently described as the biggest gaps in care. Despite strong emotional reactions to the initial diagnosis of HF or talk of heart transplant, mental health services and supports were not always offered. Women were often shocked, fearful and felt lost following a diagnosis of HF. A few women continued to deal with post-traumatic stress disorder (PTSD) that still had an impact on their lives years after diagnosis. They spoke about ongoing anxiety and depression as they  and their families dealt with constant uncertainties and profound life changes because of their HF.

The word ‘shock’ was used by several women to describe hearing or reading their diagnosis. Tara described her experience as “a total shock” and Louise also went “through the shock of being disabled. My career was gone. It was all kinds of stuff” and hearing “you’ve got heart failure – kind of blew me up.” Sharon1 said “I was shocked”, the first time she ended up in hospital due to heart problems.

The need for emotional and mental health support at the point of diagnosis was identified by several women. Ginette says “the beginning of the incident is the most important part of the journey… I needed help six years ago… I didn’t get it.” Barbara found it “very depressing” at first, as her whole life changed in a short time. Ronda said “in the beginning, I was a big negative. I was a little depressed.”

Louise, Ginette, and Lise all describe feeling ‘lost’ when you are diagnosed with heart failure. Ginette said “… sometimes I am so confused and so lost but I try like the rest of the world to get up every morning and do my best with what I got because what else am I supposed to do, just give up and die, you know?”

Other women spoke about their fears of death and what life will look like as time moves on. Pam asked “Am I going to die?”, giving voice to worries that many women have. Susan1 describes how “the fear was starting to sink in”, knowing that her condition was getting worse over time.

 

Professional Mental Health Support Needed as Part of HF Care

Those women who received professional mental health support said it was very helpful in times of crisis and also helped them develop self-care and coping skills. However, mental health and psychological services were not always offered, nor were they a routine part of HF care. Many women had to seek out and pay for their supports privately or go without. Funded and available psychological counselling was only a routine part of transplant care teams, who reportedly provide free counselling for life.

Lynda was fortunate to be a part of a heart failure program that offered psychiatric care including medication if needed. Later, she became part of the transplant program which offers access to counselling support for the rest of her life. Naomi found her counsellor very helpful in adjusting to life with heart failure.

 

No Mental Health Help Offered

Some women were not offered any mental health or psychological support, leaving them on their own to cope with devastating life changes. Lillian could not believe that there was no mental health or emotional support offered as part of her cardiac care.

 

Affects Entire Family

Family members, particularly children and spouses, may also need support when their mother or wife is diagnosed with heart failure. Several women spoke about the amount of stress and fear that their HF placed on their parents, children, spouses and siblings who feared that they might lose their loved one.