Katie Palmer1, Dr Kelly-Ann Bowles1, Professor Rebecca Lane3, A/Professor Julia Morphet1,2
1Monash University, 2Monash Health, 3Victoria University
Heart failure (HF) is a debilitating, life-long disease with a heavy personal cost, significantly impacting quality of life. As medicine advances and management of HF changes, it is important that the experience of those living with HF is known, to aid health professional understanding, to help to provide value based healthcare. The aim of this study is to describe the experience of people living with HF and their loved ones from their own perspective.
Eighteen people (12 with a diagnosis of HF and six family members) were interviewed about their experiences of living with heart failure. The responses were analysed from a realist thematic viewpoint, to report a refined account of the participants’ lived experiences and realities.
Participants reported their lived experience of HF through several emotional heartaches that developed throughout their disease journey. These heartaches included shock, uncertainty, fear, shame, guilt, and frustration, and were often interwoven together. Disease terminology, poor communication and low health literacy were all found to amplify the heartaches. Interactions within the participant’s community, their decision making and engagement in healthcare were all strongly influenced by these heartaches.
The heartaches that come from living with HF have a significant impact on many areas of the individual’s life. Health professionals need to be aware of these heartaches when engaging individuals with HF in healthcare services and alter their approach accordingly. To provide valuable, meaningful healthcare experiences, the use of the correct terminology is essential, as is improving HF health literacy to reduce some of these heartaches.
Katie Palmer is a physiotherapist with a decade of experience working across the continuum of care, specialising in cardiorespiratory physiotherapy, particularly community rehabilitation in the cardiac field. She is currently completing her PhD with Monash University, investigating engagement in Chronic Heart Failure and strategies to improve both referral and uptake.