Psychosocial impact of COVID-19 on cancer patients, survivors, and carers in Australia: a real-time assessment of cancer support services

• Published in: Supportive care in cancer 2021-09, Vol.29 (9), p.5463-5473
• Main Authors: Edge, Rhiannon, Mazariego, Carolyn, Li, Zhicheng, Canfell, Karen, Miller, Annie, Koczwara, Bogda, Shaw, Joanne, Taylor, Natalie
• Format: Article
• Language: English
• Subjects: Analysis; Cancer; Cancer patients; Care and treatment; Caregivers; Content analysis; Coronaviruses; COVID-19; Disease susceptibility; Epidemics; Measuring instruments; Medical advice systems; Medicine; Medicine & Public Health; Nursing; Nursing Research; Oncology; Oncology, Experimental; Original; Original Article; Pain Medicine; Pandemics; Patient-centered care; Patients; Psychological aspects; Rehabilitation Medicine; Social aspects; Social networks; Stress (Psychology); Survivor
• ISSN: 0941-4355; 1433-7339
• DOI: 10.1007/s00520-021-06101-3

Purpose This study aimed to explore the psychosocial impacts of the coronavirus disease (COVID-19) pandemic on cancer patients, survivors, and carers in Australia. Methods Using real-time insights from two Cancer Council NSW services—131120 Information and Support Line and Online Community (CCOC) forums—we assessed service demand trends, distress levels (using the distress thermometer), and content from 131120 calls and online posts between 01 December 2019 and 31 May 2020. Emergent themes were identified through an inductive conventional content analysis with 131120 call notes, followed by a deductive directed content analysis on CCOC posts. Results In total, 688 COVID-19-related 131120 calls ( n = 496) and online posts ( n = 192) were analysed. Service demand peaked in March 2020 and self-reported distress peaked in May 2020 at an average of 8/10 [Mean = 7.5; SD = 0.9]. Five themes emerged from the qualitative analysis: psychological distress and fear of virus susceptibility, practical issues, cancer service disruptions, information needs, and carer Issues. Conclusions The psychosocial impacts of COVID-19 on people affected by cancer are multifaceted and likely to have long-lasting consequences. Our findings drove the development of six recommendations across three domains of support, information, and access. Cancer patients, survivors, and carers already face stressful challenges dealing with a cancer diagnosis or survivorship. The added complexity of restrictions and uncertainty associated with the pandemic may compound this. It is important that healthcare providers are equipped to provide patient-centred care during and after this crisis. Our recommendations provide points of consideration to ensure care is tailored and patient oriented.