RESUMEN
BACKGROUND: Patients and their caregivers are expected to take joint responsibility for reporting symptoms and seeking medical assistance, for example, by calling oncology emergency telephones or other helplines during a cancer trajectory. RESEARCH OBJECTIVE: The aim was to explore the meaning of responsibility as it appeared in patients' or caregivers' experiences of calling an oncological emergency telephone. DESIGN, PARTICIPANTS AND CONTEXT: Inspired by qualitative description and qualitative content analysis, a secondary analysis of data from interviews with 12 participants calling the oncological emergency telephone at a Danish university hospital was performed. ETHICAL CONSIDERATIONS: The project observes demands for safekeeping data and all regulations concerning research ethics in agreement with the Nordic Nurses Federation and the Danish Health Act. FINDINGS: Two main themes emerged: (1) to act responsibly as a patient or caregiver was to 'be watchful and alert', 'report symptoms the right way' and 'do crosschecking' and (2) to deal with the burden of responsibility was to 'feel safe when dealing with the burden of responsibility' and 'be relieved from the burden of responsibility'. DISCUSSION: Too much responsibility and a potential imbalance between healthcare professionals' expectations and callers' knowledge and capacity to act may place additional burdens on the callers, which may be eased by person-centred care. CONCLUSION: The meaning of responsibility appeared in the participants' capacity to act, where they observed, assessed and reported symptoms and controlled prescribed treatments as well as shared or handed over the responsibility to the healthcare providers. Thus, the analysis provided essential knowledge for healthcare professionals on how patients and caregivers handle this responsibility when faced with a cancer disease that is treated on an outpatient basis.
