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

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.

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.

Experience of living with an enterocutaneous fistula.

AIMS AND OBJECTIVES: The purpose of this study was to describe patients' experiences of living with an enterocutaneous fistula. BACKGROUND: An enterocutaneous fistula is a complex and serious illness that usually occurs as a complication from surgery or spontaneously as a result of an underlying disease. The illness is demanding both physically and mentally and causes substantial medical and nursing problems for the afflicted individual. DESIGN: A descriptive design with a qualitative approach. METHODS: In-depth interviews were performed with nine participants who had experiences of living with an enterocutaneous fistula. The analysis was conducted using descriptive phenomenology according to Giorgi. RESULTS: The essence of this study was that living with an enterocutaneous fistula is about handling an illness that causes several limitations in daily life and the following five themes emerged from the data: restrictions in daily life, approaches to illness, emotions, dependence and need of support. A constant fear of leakage from the fistula appliance, being dependent on intravenous fluids and being dependent on health care professionals caused isolation and social restriction. CONCLUSIONS: The participants had many strategies for handling their illness. By being well trained, engaged and having a positive and understanding approach, health care professionals can encourage hope, motivation and self-care. This can lead to decreased dependence and help the patient to better handle their illness. RELEVANCE TO CLINICAL PRACTICE: The competence of health care professionals is essential in the care of patients with an enterocutaneous fistula.