Putting life on hold: A longitudinal phenomenological-hermeneutic study of living with [or close to someone with] an enterocutaneous fistula before and after reconstructive surgery

Aims and Objectives Illuminate meanings of living with [or close to someone with] an enterocutaneous fistula before and after reconstructive surgery. Background Enterocutaneous fistula is a serious condition affecting the well-being and social life of both patients and families, sometimes for several years. Design A longitudinal qualitative design. Methods Patients and families (n = 14) were followed with dyadic interviews at three occasions, conducted 2017-2020. The interviews were analysed with a phenomenological-hermeneutic approach. COREQ guidelines were followed. Result Living with an enterocutaneous fistula was explained as life being put on hold, while living in a bubble for an uncertain time. This bubble meant facing an unpredictable and restricted life where the dyads were forced to take control over the situation despite being vulnerable inside, striving to resume normality. The patients dealt with never-ending symptoms such as leakage from the fistula, pain and fatigue, while the family supported with practical matters and just being close. Dependency on intravenous fluids resulted in social isolation, which caused mode swings and depressiveness. In this situation, healthcare professionals often became a substitute for other interactions, but the lack of understanding about the dyads' situation, affected their trust in the healthcare. Despite all, they still had belief in the future, the patients having higher expectations than the family. Conclusions Living with an enterocutaneous fistula meant a daily life struggling with many limitations. This implies that the transition was associated with difficulties and the dyads strived to accept their situation. Relevance to Clinical Practice The findings indicate that these patients must be cared for with a multidisciplinary approach. A person-centred health plan could impact on the dyads' feeling of control and thereby making them less dependent on healthcare. Every patient should have their own contact nurse and be offered psychological support. No Patient or Public Contribution Not applicable due to the current method.