Engaging with Breast Cancer Services: Experiences of Patients During the COVID-19 Pandemic

Background

The COVID-19 pandemic caused significant disruptions to cancer care, yet little is known about how individuals diagnosed with breast cancer navigated the challenges across diagnosis, treatment, and survivorship. This study used a Constructivist Grounded Theory approach to explore the barriers and facilitators to accessing care among 15 women in the United Kingdom diagnosed with breast cancer during the pandemic.

Methods

Data were gathered through remote open-ended interviews with participants recruited from the online patient forums provided by Breast Cancer Now. The responses gathered from the interviews were analysed inductively through an iterative approach. The processes of peer debriefing, initial and focused coding, constant comparison and memo writing facilitated category development. The researcher maintained a reflexive stance throughout the study acknowledging that the conceptual model is a co-construction of knowledge shared between the researcher and participants.

Findings

The women in this study navigating breast cancer care during the COVID-19 pandemic experienced heightened psychological distress, driven by fear of infection, uncertainty about prognosis and disrupted care pathways. Social isolation resulting from visitor restrictions and lockdowns reduced access to informal support, heightening emotional vulnerability. Modified care pathways, companion restrictions at medical appointments and fragmented survivorship care further intensified distress and undermined confidence in healthcare continuity. Pandemic safety measures and public health messaging limited engagement with cancer services and reduced perceived support during treatment. Protective factors included sustained social connection, with some women benefiting from digital resources or online support networks, although such resources were not equally available. Personal resilience approaches were demonstrated by the women throughout the cancer continuum, with participants expressing the need to self-advocate, self-manage and emotionally cope in the face of restricted institutional and social support. The core experience for many women was navigating breast cancer care during the COVID-19 pandemic with a profound sense of being ‘on their own’. The conceptual model illustrates how people with breast cancer navigated care during the pandemic across the cancer continuum influenced by individual, interpersonal, cultural, structural and organisational factors.

Conclusion

Effective breast cancer care during crises must extend beyond clinical treatment to include and protect psychosocial support, person-centred service delivery, and transparent communication.