Abstract
ObjectiveHaematological 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.MethodsTwenty‐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.ResultsFour 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.ConclusionsThe 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.
Highlights
| Participants and recruitmentAfter completion of the survey, participants were invited to participate in an interview to obtain a better understanding of their experiences and needs during the pandemic
This study found that haematological cancer patients experienced gaps in information during the COVID‐19 pandemic, which contributed to anxiety and fear
This is important given the rapid uptake of telehealth consultations, which may be less suited to culturally and linguistically diverse (CALD) patients and can exacerbate inequalities in cancer care.[6,34]
Summary
After completion of the survey, participants were invited to participate in an interview to obtain a better understanding of their experiences and needs during the pandemic. Purposive sampling techniques were used to select interview participants who (1) had received a haematological cancer diagnosis since 2004 and (2) had an appointment scheduled during the pandemic. Reflexive thematic analysis of the transcripts was guided by Braun and Clarke's six‐stage method.[20,22] All transcribed interviews were read and checked against the original recordings to ensure accuracy and familiarisation with the content (step one). After discrepancies were resolved through discussion and consensus was achieved, coding on remaining transcripts was performed by MM (step two), and codes were categorised ‘patient experiences’ and ‘system and communication issues’ (step three). These categories were refined into themes and formally defined (steps four and five) and subsequently summarised with extracts from the transcripts (step six)
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