RESUMO
BACKGROUND: Besides survival, improvement in quality of life (QoL) is a major aim of left ventricular assist device (LVAD) implantation. QoL assessment tools in current use are effective in the gathering of standardized metrics but are limited in their ability to elucidate everyday lived patient experiences that also affect overall patient wellbeing. OBJECTIVE: To describe and understand the lived experiences of patients undergoing long-term circulatory support with LVAD. METHODS: A phenomenological approach was used. Purposive sampling of consecutive willing inpatients and outpatients living with an LVAD for longer than 6 months was conducted until theme saturation. There were a total of 21 patients interviewed and this was then recorded and transcribed. RESULTS: A total of eight themes emerged from the data. Overall, the patients' quality of life was affected by: (1) whether they had experienced improvements or setbacks in their recent health condition, (2) experiencing burdens from their device such as weight and handling, (3) limitations in their physical ability such as participating in sports, their inability to work; or reduced sleep, (4) reduced social interactions; (5) reduction in sexual activity and performance; (6) experiencing emotional and psychological problems and experiencing anxiety. Patients highlighted the value of obtaining (7) support from family and friends. The interviews also revealed that some patients experienced the feeling of (8) optimism and obtaining "a second chance" at life. CONCLUSIONS: LVAD patients have unique concerns and lived experiences. Some themes emerging from this interview series such as having to give up work, having reduced social contact, reduced sexual activity and emotional problems, family support structures demand careful attention during the pre-implantation counselling and post implantation ongoing care. These aspects also deserve more attention in quality of life studies among LVAD patients. Patients with recent improvements in health reported a more positive outlook. Overall the majority of patients reported feeling that they obtained a second chance at life.
