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

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. To explore healthcare professionals' experiences of providing care for patients with enterocutaneous fistula in hospital and in homecare. A qualitative descriptive study design based on five focus group interviews involving 20 healthcare professionals. Data was analysed using content analysis. 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. 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.