Experiences of Patients and Relatives with COVID-19 related Delay or Change in Cancer Care: Presenter(s): Ilyse Kenis, KU Leuven, Belgium. (April 2023)

• Record Type: Journal Article
• Authors: Theys, Sofie; Daem, Michiel; Decoene, Elsie; Demolder, Veerle; Duprez, Veerle; Quaghebeur, Marijke; Pape, Eva; Verhaeghe, Sofie; Foulon, Veerle; Van Hecke, Ann
• Is Part Of: Patient education and counseling. Volume 109(2023)Supplement
• Page Start: 84
• Publication Date: 2023-04
• Subjects: Patient education -- Periodicals; Health counseling -- Periodicals; Health education -- Periodicals; Counseling -- Periodicals; Patient Education -- Periodicals; Éducation des patients -- Périodiques; Counseling -- Périodiques; Éducation sanitaire -- Périodiques; 615.5071
• DOI: 10.1016/j.pec.2022.10.198
• Languages: English
• ISSNs: 0738-3991

Abstract

Abstract : Background: Quantitative studies on distress and anxiety among oncological patients during the COVID-19 pandemic do not provide in-depth insight in how delay or changes in cancer care impact patients' well-being. Moreover, these studies do not take into account the perspective of relatives. Therefore, a qualitative study was set up to investigate how patients and their relatives experienced change or delay in cancer due to COVID-19. Methods: Semi-structured interviews were conducted with 42 oncological patients who were confronted with a change or delay in care initiated by their healthcare professional (HCP), or who changed or postponed their care on their own initiative. Also, 11 relatives of these patients were interviewed. Participants were recruited from 11 hospitals across Flanders (Belgium) during the first wave of the pandemic (July – October 2020). An inductive qualitative data analysis based on the principles of grounded theory was performed. Findings: In general, it was difficult for patients to deal with the change or delay of care, both when this was decided by the hospital and by themselves. In combination with the general impact of COVID-19 on their daily life, this caused additional anxiety and distress. Increased levels of distress were also present among relatives. The interviews showed that exploring the meaning of change or delay of care for patients and their relatives and discussing what would help them, might prevent or releave distress. In addition, the interviews demonstrated the importance of the involvement of relatives in situations of emergency. Discussion: The Findings: of our study show that COVID-19 and the associated delay or changes in cancer care had a major impact on the wellbeing of patients and their relatives. A patient- and family-oriented approach is crucial in all decisions regarding (changed or delayed) care and should not get lost in times of emergency.