“Being in good hands”: Next of kin’s perceptions of continuity of care in patients with heart failure

Abstract Background Heart failure (HF) is a chronic condition with a variety of diverse symptoms. Patients with HF are usually elderly with multimorbidity, which are both multifaceted and challenging. Being a next of kin to patients with HF is described as a complex task consisting of managing care and treatment, monitoring illness and being an emotional support, while also being able to navigate the healthcare system especially in long-term contact. However, few studies have investigated next of kin's perceptions of continuity of care in connection with HF. The present study aimed to describe continuity of care as perceived by the next of kin who care for patients with HF. Methods This study used a qualitative descriptive design. Semi-structured interviews were conducted with the next of kin (n=15) of patients with HF to obtain their perceptions of continuity of care. A phenomenographic analysis method was used to capture the participants' perceptions of the phenomenon. Results The analysis reveals that the next of kin perceive that support from healthcare professionals was strongly associated with experiences of continuity of care. Four categories reveal the next of kin's perceptions of continuity of care: Want to be involved without being in charge; A desire to be in control without acting as the driving force in the care situation; A need for sustainability without being overlooked; and Focusing on making life meaningful while being preoccupied with caregiving activities. Conclusions Next of kin perceive continuity of care to entail well-functioning, long-term and reliable contact with healthcare providers that support them in reducing unnecessary medical and nursing hindrances. They have a variety of needs for continuity and support in connection with their caregiving activities so they can continue to live a meaningful life under the prevailing circumstances. In order to strengthen the next of kin's contact with healthcare providers, it is important to consider the need for continuity of care in relation to patients with HF. Keywords Continuity of care, Heart failure, Next of kin, Phenomenography, Qualitative research