Cancer patients and their caregivers are expected to take joint responsibility with regard to reporting symptoms and seeking medical assistance e.g. by calling oncology emergency telephones or other helplines during their cancer trajectory. This responsibility may pose additional burdens on patients and caregivers when they are at home with symptoms that can be potential life threatening. Furthermore, in this vulnerable situation, the ability to handle the responsibility is compromised, which may influence safeguarding fundamentals of care needs. Therefore, the objective of this study is to explore the meaning of responsibility as it appeared in patients or caregivers calls to an oncology emergency telephone.
Qualitative description and qualitative content analysis guided a secondary analysis and interpretation of data from interviews with 12 participants calling an oncology emergency telephone.
The analysis revealed two main themes. 1). To act responsibly as patient or caregivers was elaborated by: ‘Being watchful and alert’, ‘Reporting the symptoms’, and ‘Cross checking’. 2). To deal with the burden of responsibility was elaborated by the sub-themes: ‘Feeling safe in dealing with the burden of responsibility’, and ‘Being relieved from the burden of responsibility’.
Conclusion: The study provided essential knowledge on how patients and caregivers handle responsibility in their everyday living with a cancer disease, treated on an outpatient basis. The meaning of responsibility appeared in the informants’ capacity to act where they displayed responsibility to observe, assess and report symptoms and control prescribed treatment as well as to share or hand over the responsibility to the healthcare providers. Easing the burden of responsibility requires a person-centered approach that integrates physical, psychosocial and relational needs and bridge a potential imbalance between healthcare providers’ expectations and the patients’ or caregivers knowledge and capacity to act. For this to succeed, establishing a caring relationship between HCPs, patients and caregivers is essential.
Clinical trial identification
Legal entity responsible for the study
Has not received any funding.
All authors have declared no conflicts of interest.