Samenvatting

BACKGROUND: Acute admission to an intensive care unit (ICU) can negatively affect quality of life for patients and their relatives. Relatives play an important caregiving role after the patient's admission. More knowledge and understanding of their needs are necessary as the patient transitions home. AIM: This study aims to explore relatives' experiences of acutely admitted ICU patients' transition from the ICU to a general ward and then home. STUDY DESIGN: A qualitative study with a phenomenological approach was conducted. Interviews were in-depth and featured open-ended questions. The interviews took place after the patients transitioned from ICU to home and were conducted online by videoconference. Data were analysed using Colaizzi's seven-step method. RESULTS: Twelve relatives of acutely admitted ICU patients were interviewed. Five main themes emerged: (1) mixed feelings, (2) sense of not being involved, (3) limited information provision, (4) lack of acknowledgement as a caregiver, and (5) an uncertain future perspective. Relatives experience major uncertainties during transitions and prefer to be actively involved in care and care decisions. CONCLUSIONS: This study indicates that relatives of ICU patients experience a lack of guidance during the transitions from the ICU to a general ward and to home, or a follow-up facility. More focus is needed on the themes of mixed feelings, the sense of not being involved, limited information provision, lack of acknowledgement as a caregiver, and an uncertain future perspective. This increased focus might improve the guidance during these transitions. RELEVANCE TO CLINICAL PRACTICE: The insights from this study may help to improve the care of patients and their relatives during the transitions.