The competence of health care professionals is essential in the care of patients with an enterocutaneous fistula.

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.

Introduction: Enterocutaneous fistula is a rare and complex condition with high morbidity.The condition causes multiple health problems, and it is both physically and psychologically demanding for the affected person and their families. Infection, fistula wound care challenges, electrolyte and fluid imbalance, and malnutrition render the individual in need of long periods of in-hospital care and homecare. This also places great demands on healthcare professionals and knowledge among healthcare professionals can be lacking. The patients have different needs and person-centred care is one way to promote individualised care based on the patient's specific needs. Research about how enterocutaneous fistula affects the individual and their families is scarce, and healthcare professionals often have little experience providing care for these patients. There is also a lack of population-based studies on enterocutaneous fistula.The annual incidence of enterocutaneous fistula was 1.87 per 100.000 persons. Cumulative enterocutaneous fistula related in-hospital care, until closure or end of follow-up, was median 4 (range 0-61) weeks. Thirty-seven per cent of the patients needed parenteral supplementation and 80% needed help with fistula wound care. Home-based healthcare, i.e., fistula wound care, resources for parenteral feeding and access to 24-hour emergency wound care at home, was provided to 42.2% of the patients. Estimated overall mortality at one, three, and five years was 33.7%, 42.1%, and 47.6%, respectively. Mortality was dominated by patients who did not have spontaneous closure of the enterocutaneous fistula or undergo reconstructive surgery.Conclusions: Enterocutaneous fistula is a serious condition with a high overall mortality and the patients need a lot of healthcare resources. The condition restricts the patient's and family's daily life and leads to social isolation and psychological distress. By promoting person-centred care and patient participation, the healthcare professionals can strengthen autonomy in daily life and improve the patient's ability to cope with the situation. Regular team meetings of the multidisciplinary team, careful planning before discharge and providing person-centred care can facilitate the care process for everyone involved.

Background Enterocutaneous fistula is a rare but complex and serious condition that is both physically and psychologically demanding for the person affected. Infection, fistula dressing problems, electrolyte and fluid imbalance and malnutrition render the individual in need of long periods of in-hospital care and homecare. This place great demands on patients, families, and healthcare professionals. More research is needed to bridge the gap between hospital and home-based healthcare services. Aim To explore healthcare professionals’ experiences of providing care for patients with enterocutaneous fistula in hospital and in homecare. Material and methods A qualitative descriptive study design based on five focus group interviews involving 20 healthcare professionals. Data was analysed using content analysis. Results Three categories with seven corresponding subcategories were developed; 1) Providing care for patients with enterocutaneous fistula in the hospital and at home was complex and time and resource consuming. Participants were struggling with practical issues and lacked disease-specific knowledge and skills; 2) Caring requires an integrated approach but it was challenging to work interprofessionally and cope with barriers in collaboration between providers; 3) Building long lasting relationships with patients and their families was fundamental to the caring process. Participants needed to hide their own feelings related to smell and appearance of the fistula as well as frustration when the fistula dressing did not hold without leaking. The healthcare professionals expressed that the involvement of the patient and their close family was important when proving care, likewise, to have a great understanding of the patients’ suffering. Discussion The care of patients with enterocutaneous fistula is complex and means engagement for long periods, both in hospital and in home-based healthcare. Regular team meetings of the multidisciplinary team, careful planning before discharge and providing person-centred care can facilitate the care process.