Identifying strategies to support gynaecological cancer patients and carers during COVID-19: Learning from patient-charity interactions

OBJECTIVES: Supporting cancer patients during COVID-19 has posed unique challenges for health care providers. We investigated patient and carer-charity interactions to explore the role of charities and identify concerns expressed by patients. The study aims to address these concerns and learn how health care providers can support patients.

METHODS: Digital interactions on forum posts and social media were collected from four gynaecological cancer charities from March-May 2019 (before COVID-19) and 2020 (during COVID-19). Thematic analysis of forum posts and semistructured charity staff interviews investigated patient and charity-focused perspectives.

RESULTS: Thematic analysis of forum posts and charity staff interviews (n = 8) revealed three consistent themes: (1) Health care changes and the effect on cancer management concerns; (2) psychological impact of lockdown isolation and anxiety of changed treatment; (3) the complexity of shielding guidance on self-risk assessment. Patients valued cancer charities' responses through digital and conventional methods (webinars, social media, forums, and websites).

CONCLUSION: Gynaecological cancer patients had concerns about the risk and impact of changed treatment plans, contacting charities as the first port of call when anxious not to burden health systems. Real-time analysis of charities' communications can be used to identify concerns and to proactively provide patient support, together with health care providers.