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

Abstract

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.

Healthcare professionals’ experiences of providing care for patients with enterocutaneous fistula in hospital and in homecare: A qualitative study

“…Overall, the healthcare professionals in our study acknowledged patients’ suffering and were aware of the negative impact that the ECF had on the daily life of both the patient and their family and tried to meet the needs and requests of the patient. This is in agreement with one of our previous qualitative longitudinal studies showing that patients with ECF and their family members faced an unpredictable and restricted life with social isolation and a lot of physical and psychological symptoms [ 7 ].…”

“…Living with ECF causes pouching problems, electrolyte and fluid imbalance, malnutrition and infections [ 5 ], which render the person dependent on healthcare [ 6 , 7 ]. Moreover, the condition is both physically and psychologically demanding for the individuals affected, which could lead to depressive symptoms and feelings of anxiety [ 6 – 8 ].…”

“…This complex situation means multidisciplinary teamwork is necessary [ 1 , 2 , 5 , 9 ]. However, a multidisciplinary team approach that provides care based on the needs and preferences of each patient irrespective of where the care is provided, can be challenging due to organisational barriers [ 7 ]. Nevertheless, there is a lack of studies reporting the experiences of providing care for patients with ECF and how to overlap those organisational challenges.…”

Exploration of critical care nurses' challenges in caring for enterocutaneous fistula as a complication for an open abdomen: A qualitative study

“…Patients with ECF become dependent on large doses of opioids and nonopioid analgesics. Parli et al 37 and Härle et al 38 both argued that opioid usage decreases gastric motility while somatostatin reduces gastric hormones 37,38 . Critical care nurses should provide emotional support by assisting the patients, ensuring comfort, and guiding them through their disease process 39 …”

“…Parli et al 37 and Härle et al 38 both argued that opioid usage decreases gastric motility while somatostatin reduces gastric hormones. 37,38 Critical care nurses should provide emotional support by assisting the patients, ensuring comfort, and guiding them through their disease process. 39 The CCNs stated the frustrations in patients with ECF frequently developing infections.…”