Concerns of gynaecological cancer patients during the COVID-19 pandemic and the role of cancer charities in supporting them: an investigation of patient-charity interactions.


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Pratyusha Saha1, Jameela Sheikh1, Meghnaa Hebbar1, Sudha Sundar1, Anne Lanceley2
1University of Birmingham, 2University College London (UCL)

Abstract

Background

Cancer charities are key providers of information and interaction with patients and carers during the COVID-19 pandemic. This study aimed to investigate patient/carers – charity interactions to identify patients’ key concerns and the evolving nature of information and support provision by cancer charities.

Method

Quantitative and qualitative data of patient/carer – charity interactions across four gynaecological cancer charities were collected between March-May 2019 (pre-pandemic) and March-May 2020 (during pandemic). Interactions were quantified as the number of posts in charity-specific forums and social media channels. Thematic analysis of online forum posts and semi-structured interviews of charity staff investigated patient and charity staff-focused perspectives, respectively. 

Results

Quantitative data highlighted the use of in-person and digital forms of communication by charities for information and support provision. The charities observed more interactions on digital platforms in 2020, such as through webinars. Qualitative analysis of patient-focused forum posts (n=873) and charity staff interviews (n=8) revealed marked alignment across three key themes. The first theme identified concerns about patients’ tailored access to health services due to changes in healthcare and public policies affecting disease management. The second theme identified the psychological impact of the COVID-19; changes in treatment plans led to anxiety about the effectiveness of treatment, and lockdowns led to widespread feelings of isolation among patients/carers. The third theme highlighted the complex effect of COVID-19 shielding guidance on women’s self-assessment of risk. The charities responded through multiple methods, including patient-facing webinars, forum and website posts and social media interactions.

Conclusion

Cancer patients experienced significant concerns around the risk and impact of changed treatment plans, which must be addressed by healthcare systems. Cancer charities were vital in providing support, often acting as the first port of call for cancer patients anxious not to burden health systems. They adapted their communications using social media, website/forum posts and webinars. Healthcare providers working in concert with cancer charities can use these approaches to address information and support needs proactively.

Impact statement

Our study highlights gynaecological cancer patients' concerns during the COVID-19 pandemic that must be addressed by healthcare systems, while illustrating the crucial role of cancer charities in supporting patients proactively.