Experiences and Fundamental Care Needs in Patients With Small Intestinal Neuroendocrine Tumours—An Interview Study in a Surgical Context

Abstract

ABSTRACTAimsThe study aimed to describe patients' fundamental care needs and their experiences of nursing care, throughout surgical treatment of small intestinal neuroendocrine tumours.DesignA qualitative descriptive study was performed.MethodsPatients' interviews (n = 19) were conducted in Sweden from May 2021 to January 2022 and analysed using directed qualitative content analysis guided by the Fundamentals of Care framework.ResultsThe results are presented in three descriptive categories chronologically throughout the care chain. In the preoperative phase of care, the category was ‘Feeling safe but lonely and frightened, and struggling with existential thoughts’; experiences in the postoperative phase of care resulted in the category ‘Feeling cared for but suffering from physical symptoms and feelings of loneliness’; and the category in the discharge phase was ‘Lacking self‐care information and feeling worried about the future’.ConclusionThere were deficiencies in the delivery of fundamental care for patients with a rare tumour diagnosis throughout surgical treatment. Nursing care is mostly task focused and fragmented, and there is a lack of psychosocial and relational care across the care chain. Registered nurses and nursing managers need to take responsibility for their leadership in nursing care to fulfil patients' fundamental care needs. The Fundamentals of Care framework could be used for work improvements to include all aspects of nursing care.Implications for the Profession and/or Patient Care High‐quality nursing care is needed throughout the care chain, including self‐care after discharge, for patients with this rare tumour diagnosis. A higher awareness of patients' experiences and the importance of psychosocial support is warranted. Registered nurses and nursing managers must revise and improve routines to support patients' psychosocial needs. Registered nurses need to take responsibility for their leadership in nursing care to fulfil patients' fundamental care needs. ImpactWhat problem did the study address? This study highlights patients' fundamental care needs and experiences of nursing care throughout surgical treatment of small intestinal neuroendocrine tumours.What were the main findings? There are deficiencies in fulfilling patients' fundamental care needs across the care chain and in all dimensions of the Fundamental of Care framework throughout surgical treatment of small intestinal neuroendocrine tumours. Patients struggled with loneliness and existential thoughts, as well as worries about the future. Patients experienced a lack of information about plans for the day, self‐care, and follow‐ups.Where and on whom will the research have an impact? For clinicians to develop an understanding of, and improve, fundamental care needs for patients with small intestinal neuroendocrine tumours in a surgical context. For registered nurses to understand the importance of their leadership and nursing responsibility to fulfil fundamental care needs.Reporting MethodThe consolidated criteria for reporting qualitative research (COREQ): a 32‐item checklist for interviews and focus groups.Patient ContributionThe patients shared their experiences during the interviews, which has contributed to a deeper knowledge and understanding of the phenomena under study.