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

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. Supplementary Information The online version contains supplementary material available at 10.1007/s00520-021-06101-3.

Data analysis procedures were reviewed iteratively by the research team to prevent bias and selective inattention

Fittingness
Typicality of participants from 131120 was established by collecting demographic data from national minimum database.
The sampling resulted in a range of participants who represented both cancer patients and carers.
The study results fit the data from which they were generated as demonstrated by quotes appearing in the results section and in Table 3.

Auditability
Call transcripts from 131120 are stored at CCNSW. Online posts made to the CCOC are publicly available.
The researchers kept notes as to developing codes and themes to ensure accurate recall Descriptions of the strategies used to collect and analyse the data have been detailed in text Characteristics of participants from 131120 calls are described in Table 1 The strategies used to sample calls and online posts have been described in text Twenty percent of the data was collaboratively coded with the researcher's supervisors to ensure identification of the same codes and categories

Introduction
Problem formulation -Description and significance of the problem/phenomenon studied; review of relevant theory and empirical work; problem statement Page 4 Purpose or research question -Purpose of the study and specific objectives or questions Abstract and Page 4

Methods Pages 4-6
Researcher characteristics and reflexivity -Researchers' characteristics that may influence the research, including personal attributes, qualifications/experience, relationship with participants, assumptions, and/or presuppositions; potential or actual interaction between researchers' characteristics and the research questions, approach, methods, results, and/or transferability Supplementary  table 3 Context -Setting/site and salient contextual factors; rationale**

Methods Pages 4-6
Sampling strategy -How and why research participants, documents, or events were selected; criteria for deciding when no further sampling was necessary (e.g., sampling saturation); rationale**

Methods, 'Sampling' page 4
Ethical issues pertaining to human subjects -Documentation of approval by an appropriate ethics review board and participant consent, or explanation for lack thereof; other confidentiality and data security issues

Declarations page 13
Data collection methods -Types of data collected; details of data collection procedures including (as appropriate) start and stop dates of data collection and analysis, iterative process, triangulation of sources/methods, and modification of procedures in response to evolving study findings; rationale**

Methods Pages 4-6
Data collection instruments and technologies -Description of instruments (e.g., interview guides, questionnaires) and devices (e.g., audio recorders) used for data collection; if/how the instrument(s) changed over the course of the study

Methods Pages 4-6
Units of study -Number and relevant characteristics of participants, documents, or events included in the study; level of participation (could be reported in results) Results, page 6 Data processing -Methods for processing data prior to and during analysis, including transcription, data entry, data management and security, verification of data integrity, data coding, and anonymization/de-identification of excerpts Methods, 'data analysis' page 5 Data analysis -Process by which inferences, themes, etc., were identified and developed, including the researchers involved in data analysis; usually references a specific paradigm or approach; rationale** Methods, 'data analysis' page 5 Techniques to enhance trustworthiness -Techniques to enhance trustworthiness and credibility of data analysis (e.g., member checking, audit trail, triangulation); rationale**