‘It feels it’s wasting whatever time I’ve got left’: A qualitative study of living with treatable but not curable cancer during the COVID-19 pandemic

Abstract

Background: People living with cancer that is treatable but not curable have complex needs, often managing health at home, supported by those close to them. Challenges are likely to be exacerbated during the COVID-19 pandemic and the risk-reducing measures introduced in response. The impact of COVID-19 on those living with incurable, life-threatening conditions is little understood. Aim: To investigate the experiences and identify the impact of the COVID-19 pandemic for people living with treatable not curable cancer and their informal carers. Design: Qualitative semi-structured phone interviews were conducted with 21 patients living with cancer that is treatable but not curable and 14 carers. Setting/ participants: Participants were part of a larger longitudinal qualitative study (ENABLE) on supported self-management for people living with cancer that is treatable but not curable. Results: The COVID-19 pandemic magnified uncertainty and anxiety and led to loss of opportunities to do things important to patients in the limited time they have left to live. Lack of face-to-face contact with loved ones had a significant impact on patients’ and carers’ emotional wellbeing. Carers experienced increased responsibilities but less access to formal and informal support and respite. While changes to treatment led to some concern about longer-term impact on health, most patients felt well-supported by healthcare teams. Conclusion: The study provides rich insights into the nature of challenges, uncertainty and lost opportunities resulting from the COVID-19 pandemic for patients and carers living with cancer that is treatable but not curable, which has wider resonance for people living with other life-limiting conditions.

Trapped in a double cage: How patients’ partners experience the diagnosis of advanced cancer in times of the COVID-19 pandemic: An interpretative phenomenological analysis

“…In line with the findings of Radcliffe et al 25 and Chia et al, 26 our data reveal that the COVID-19 pandemic magnified the vulnerability of the resources (ego-resiliency and the availability of a social support network) available to ensure a resilient process. 25 , 26 Nevertheless, as also confirmed by Radcliffe et al and by Chia et al, different coping mechanisms such as maintaining normality, 25 , 26 assuming responsibility 26 and managing 25 and mastering the situation are stimulated. Furthermore, as affirmed by Radcliffe et al, some carers discuss general positive aspects of the pandemic resulting in a resilient process being promoted overall and a new equilibrium being established.…”

“…Furthermore, as affirmed by Radcliffe et al, some carers discuss general positive aspects of the pandemic resulting in a resilient process being promoted overall and a new equilibrium being established. 25 However, we could not confirm some of the findings of Sia et al that are probably related to cultural habits, as there are, COVID-19 being less imminent as cancer or the downplaying of risks. 26 Nor could we confirm the finding of Radcliffe et al 25 and Sia et al, 26 stating that the carers exposed a sense of trust in authorities and healthcare providers.…”

“… 25 However, we could not confirm some of the findings of Sia et al that are probably related to cultural habits, as there are, COVID-19 being less imminent as cancer or the downplaying of risks. 26 Nor could we confirm the finding of Radcliffe et al 25 and Sia et al, 26 stating that the carers exposed a sense of trust in authorities and healthcare providers. Our findings emphasize the dynamic features of the resilience process as conceptualized by Bonanno et al 13 and as applied to cancer caregivers by Opsomer et al 10 , 14 Indeed, although important elements of resilience are strained, others are stimulated or flexibly adjusted to the new situation.…”

Perspectives of cancer patients during the COVID‐19 outbreak in Israel: The long‐term implications on support and well‐being in an exploratory qualitative study

“…Patients reported feelings of fear and frustration, increased anxiety, depressive symptoms, and feeling lonely (Hyland & Jim, 2020 ). In a recent qualitative study among incurable cancer patients and their caregivers, it was noticed that lack of face‐to‐face contact with close ones had a significant impact on patients' and caregivers' emotional well‐being (Radcliffe et al, 2021 ). A study of 658 women from Hubei Province with or recovering from breast cancer during the COVID‐19 pandemic found high rates of reported anxiety, symptoms of depression, and sleeping disorders (Juanjuan et al, 2020 ).…”

“…Despite the growing number of studies examining clinical and psychological aspects of the coronavirus, we still lack an in‐depth understanding of the pandemic's effects and implications for the mental and social state of vulnerable population groups, such as cancer patients. Indeed, the COVID‐19 pandemic resulted in uncertainty and lost opportunities that have broader implications for cancer patients and require further investigation (Radcliffe et al, 2021 ).…”