Experiences and needs of people with haematological cancers during the COVID‐19 pandemic: A qualitative study

Abstract

Objective Haematological cancer patients are particularly vulnerable to the effects of COVID‐19. In addition to being immunocompromised, pandemic‐related travel restrictions have impacted access to treatments and overseas stem cell donations for patients requiring transplantation. Given this vulnerability, people with haematological cancers are at risk of experiencing heightened distress during the pandemic. This study aimed to explore haematological cancer patients' experiences and needs. Methods Twenty‐four Australian haematological cancer patients completed semi‐structured interviews exploring their concerns and worries during the pandemic, impact of pandemic on management of disease, access to information and support, lifestyle changes, and attitudes towards emerging models of healthcare during the pandemic. Interview transcripts were thematically analysed. Results Four themes reflecting the experiences of haematological cancer patients during the pandemic were identified: ‘Fears about contracting COVID‐19' (behaviour changes to protect health, impact on daily routine and habits, annoyance at dismissive attitude of others toward COVID‐19); ‘Reduced sense of connection and support’ (reduced social support and access to external support services); ‘New challenges’ (increased financial hardship, worsened health), and; ‘Underlying system and communication issues' (access to trusted information, satisfaction/dissatisfaction with care, navigating telehealth). Participants expressed a need for improved access to support services and trusted information. Conclusions The findings emphasise the additional challenges experienced by haematological cancer patients during the COVID‐19 pandemic and their impact on daily life. Results point to the importance of validation of increased distress during periods of uncertainty; reinforcing recommendations about high‐quality sources of information; and facilitating access to support services when face‐to‐face care is limited.

The psychosocial and emotional experiences of cancer patients during the COVID-19 pandemic: A systematic review

“…Studies used many different outcome measures in their cross-sectional designs ( Table 1 ). Six studies employed a qualitative methodology [23] , [24] , [25] , [26] , [27] , [28] and four study used mixed methods [29] , [30] , [31] , [32] .…”

“…The guidelines on working from home and social distancing introduced across most of the world meant that many patients experienced a higher level of anxiety about going or returning to work [26] . Although financial hardship hit many of the population, cancer patients are known to have a higher financial burden pre-pandemic [ 28 ; 31 ; 38 ; 45 ; 59 ; 65 ].…”

“…Fear was also expressed as a response to the perceived ability of participants with cancer to respond physically or otherwise to a COVID-19 infection [ 26 ; 28 ; 51 ; 57 ; 71 ], to feel able to continue [ 69 ; 72 ] or curtail their treatment in some way [ 23 ; 45 ].…”

Haematological patients' perception of home transfusions: Effect of the COVID‐19 pandemic

“…A recent interview study of Australian haemato‐oncology patients conducted during the COVID‐19 pandemic has defined several aspects of patients' needs during the pandemic. Along with the fear of contracting COVID‐19, patients emphasized a reduced sense of social connections and external support, feelings of loneliness, and difficulties in communicating with healthcare systems and providers [17]. Other studies have shown that half of the cancer patients were affected by loneliness during the pandemic [18, 19].…”

The experiences of 33 national COVID-19 dashboard teams during the first year of the pandemic in the World Health Organization European Region: A qualitative study

“…While these provide some insight into the process, scientific methods to describe their development remains needed, offering critical historical intelligence for the future. Several systematic approaches to capture pandemic experiences have already been published, offering important insights from the perspective of healthcare providers, 39 – 41 patients 42 , 43 and the general public. 44 – 46 Second, the anecdotal evidence and our previous COVID-19 dashboard research signal a gap in cross-country collaboration in the development process.…”