The heartache of living with failure: The experience of people with chronic heart failure

Background: Chronic heart failure (CHF) is a debilitating, life-long disease with a heavy personal cost, significantly impacting quality of life. It is a priority that health professionals understand the experiences and emotional impact of living with CHF, to aid the design and delivery of healthcare. The aim of this study is to describe the experience of people living with CHF and their loved ones, from their own perspective. Design: Twelve semistructured qualitative interviews were completed with 18 participants (12 with a CHF diagnosis and six family members). The responses were analysed descriptively from a realist thematic viewpoint, to report a refined account of the participants’ lived experiences and realities. Findings: Participants reported their lived experience through two developed themes: Heartache, and Living with failure. Heartache described the emotions and emotional response caused by their experience with CHF, including shock, fear, uncertainty, shame and guilt. Disease terminology was found to be infrequently used, and the participants' understanding of CHF was low, both of which could exacerbate their heartaches. Living with failure described the way the heartaches changed their daily life and decision making. Poor communication could make their experience more difficult and frustrating, negatively impacting engagement with healthcare professionals. Conclusion: The life of those with CHF is filled with experiences that cause a wealth of emotional heartaches. Living with failure impacts on decision making, daily life and engagement in healthcare. An effort to improve health literacy, a holistic approach to communication and a focus on the appropriate application or review of the terminology should be a priority for healthcare professionals in the future to better understand and engage with this population.