Involvement un-enabled? An ethnographic study of the challenges and potentials of involving relatives in the acute ambulatory clinical pathway

BACKGROUND: Involving a patient’s relatives is a complex endeavour, especially in emergency departments (EDs). Generally, relatives are recognized as vital partners in health care, but in-depth knowledge on how these family involvement processes take place in the everyday practices of EDs is sparse. The aim of this study is to explore the practice of involving relatives in the acute ambulatory clinical pathway in the ED, as seen from the perspectives of patients and relatives. METHODS: The study was conducted as ethnographic fieldwork in an ED at a Danish Regional Hospital. Two months of participant-observation were carried out focusing on 43 patients. Of these, 18 patients and/or relatives were selected for telephone interviews after 1 week, and of these 11 were selected for in-depth interviews 3 weeks later. RESULTS: Unpredictability is a basic condition of any ED. For the patients and relatives, who are unfamiliar with the routines in the ED, unpredictability translates to a sense of temporal and existential unpredictability, reinforced by a sense of not knowing when the examinations will be completed or if/when they will be sent home. Relatives’ involvement in the ED is affected by this sense of unpredictability and by the existing relations between patients and their relatives prior to entering the ED. The stay in the ED is only one ‘stop’ in the complete acute ambulatory clinical pathway but relatives’ involvement also concerns the time before and after the stay in the ED. Practices of involving relatives leave (some) relatives invisible in the clinical pathway. As a consequence, they are often not addressed, which un-enables their involvement. CONCLUSION: Involvement of relatives presupposes recognizing the relatives as participants if they are to be involved in the patient’s clinical pathway in the ED. As a start, it is advisable that the medical staff ask the patients on arrival who has accompanied them in the ED, and if and in what way they want their companions involved in the ED. There is a need for a more integrated and contextualized understanding of relatives’ involvement, as it takes place along an extended acute ambulatory clinical pathway. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12913-020-05923-x.