Abstract
BACKGROUND: Despite evidence that structured, multidisciplinary care for people with advanced heart failure (AHF) significantly enhances patients' quality of life, critical questions remain regarding how such care should be optimally designed. To improve the quality of life for people with AHF, healthcare professionals must deepen their understanding of what these patients genuinely need and how best to meet them in their illness trajectory. AIM: To describe patients' experience of living with advanced heart failure in Sweden. METHODS: Fifteen patients with AHF from a medium-sized hospital in Sweden were recruited for a qualitative interview study. Content analyses were conducted. RESULTS: Living with AHF was viewed as life changing. The overarching theme, To live in the present, describes the participants' overall experience of their life situation. Four categories and ten subcategories were identified. The four categories were: Symptoms affecting life, Making the most out of life given, Coping with emotions, and To be a part of health care. CONCLUSION: This study provides valuable insights in how patients with AHF experience their life and need care. The results highlight the need for health care to provide support to help patients cope with emotional, social, spiritual and practical everyday life situations to ease self-care.