“No turning back” Psycho‐oncology in the time of <scp>COVID</scp>‐19: Insights from a survey of <scp>UK</scp> professionals

Abstract

The COVID-19 pandemic has had a profound impact on every aspect of UK life in 2020. Health care systems have been radically reshaped at all levels to prepare for and manage coronavirus admissions whilst simultaneously trying to limit wider infection. As a consequence, cancer services have experienced major disruptions across every element of routine pathways; screening programmes have been suspended, treatments halted and face to face consultations severely restricted.1-3 In addition, many cancer patients have also been advised to socially isolate at a time of increased psychological distress and need. In response to the pandemic, The British Psychosocial Oncology Society (BPOS) reached out to the society membership and wider community to gain first hand perspectives on the impact of COVID-19 on psycho-oncology activity. Views were sought from professionals working across the field from clinical and third sector services and academic settings. We wanted to build a picture of how services, teams and individuals are adapting under the strains of the pandemic. Importantly, we sought to understand the challenges being faced as well as the positive responses and opportunities arising from the crisis. A cross-sectional qualitative survey. The survey was administered via QUALTRICS between May 19, 2020 and June 2, 2020 (during which time many lockdown measures were in place across the UK). The survey included brief demographic items and nine COVID-19 focused questions with free text response boxes (Figure 1). We aimed to recruit UK based professionals working in the field of psychosocial oncology including health professionals (from nursing, allied health, clinical/medical oncology, clinical psychology, psychiatry), third sector/charity organisations and academia. The survey invitation was disseminated via BPOS membership (N = 114) and wider networks (email and social media platforms). The information sheet included details on data anonymity and procedures for stopping participation or withdrawing data. Participants gave informed consent before continuing to survey items. Ethical approval was gained from Leeds Beckett University Psychology Department ethics committee on 19th May 2020 (REC reference 71 829). Demographic information was analysed descriptively with frequencies and proportional data reported using SPSS Version 26. Data from the open questions were subject to thematic analysis.4 Data were reviewed by all authors, and notes created about possible codes. Formal coding of data from each question was completed by two researchers; any discrepancies were discussed. Codes were extracted and drawn into sub-themes and themes. These were organised around strengths, weaknesses, opportunities and threats (SWOT) framework5 to facilitate interpretation. Strengths and weaknesses focus on exploring events that have already happened; opportunities and threats look to the future. The survey was completed by 94 participants (see Table 1) based in a range of settings; clinical, n = 47 (50%), academic, n = 33 (35%), third sector n = 10 (11%), other n = 4 (4%). Key findings are described separately below for psycho-oncology services and research activity. Table 2 provides a summary of results within the SWOT framework. Patients have had treatment plans altered, e.g. chemo or radiotherapy instead of surgery, treatments have been delayed (particularly surgery), new diagnoses are reduced significantly in number All psychological care has moved to either telephone or video calls which has a particular impact for newly referred patients as this has led to longer waiting times and the usual care provided is not effective as normal. Using telephone/video calls to complete assessments is particularly difficult as there is no existing relationship so makes it harder to form a therapeutic alliance the effective removal of face-face contact from every interaction will have unmapped and unknown effects - affect moderation, trust, decision-making, adherence - may make things better or worse - but I am worried it will be accepted as equivalent for expediency at time of heightened anxiety and risk of psycho-social morbidity, there will be less people at all of the levels needed to provide support, advice and care In relation to the care of cancer patients with COVID-19, unique challenges were raised with the psychological burden of treatment options being withdrawn or restricted. Professionals are managing significant pressures around the “increased emotional content of work” created from working remotely, supporting colleagues and being “disconnected” in some cases from clinical teams. I worry that when things return to normal we will have an avalanche of demand the focus on safety, capacity and treatment is obviously primary, but sucks out all the air and everything on wellbeing, QOL and personalised care won't get another look for a long time Speed of service change - I do think we will think more creatively about service delivery and be faster at implementing this going forward I think remote working for many patients is helpful. We can often get referrals for patients who live a considerable distance from the hospital, therefore being able to work remotely is a real advantage. Ability to work remotely will be useful with some patients, particularly those in palliative care with whom we traditionally wouldn't have completed home visits once they were unable to come in to see us. Permission by NHS Trust to work from home is welcome, especially for cancer counsellors who work part-time and otherwise spend a disproportionate time commuting, and cost I think with engaging/leading on staff support we have shown the range of skills psycho-oncology clinicians have within the hospital Significant new networks of professional contacts evolving quickly in joint enterprises; hopefully will be beneficial in future At an organisational level, the pandemic has had a major impact on psycho-oncology research delivery as many studies/trials have been stopped or suspended and the clinical research workforce has been directed to prioritise COVID-19 research. Where feasible, research studies have been adapted to take account of the barriers the pandemic has presented, whilst viewed negatively by some, it has also led to new research questions being explored. Team working remotely from home, access to some IT systems not possible, new challenges in maintaining morale and motivation and managing stress/expectations for colleagues juggling work-life-carer responsibilities Many research grant calls have been pulled or postponed (particularly from Charities). So it feels that sustaining the workforce is challenging moving forward, staff are very anxious about this Universities facing massive financial strain- not currently clear what the implications will be for jobs and research resources in coming months/years Ethics and other governance processes have been able to move incredibly swiftly I think there is great trust in the research community that people can be left to get on with their work and deliver it effectively and responsibly The tech-saviness of more people so research can be conducted with a wider spread of participants In some instances, the pandemic has created an environment which increases the relevance of certain research areas (eg, remote patient monitoring) which could facilitate opportunities and future impact. Respondents also described the formation of new research questions and collaborations with clinical colleagues which may foster future research developments. The shift to virtual conferences and research meetings is creating the potential for wider participation and engagement across academic communities. Survey respondents shared important insights on the impact of COVID-19 on psycho-oncology activity. We recognise our findings are limited by the sample size and under-representation from some professional groups. However the feedback clearly highlights the key issues that have been faced in preceding months as well as future concerns and opportunities. It is apparent that psycho-oncology professionals across the field have dealt with significant challenges during the pandemic. With the full magnitude of the impact of COVID-19 yet to be realised in cancer care, more hurdles are undoubtedly on the horizon. Importantly, the pandemic has in many instances created a platform on which the skills and knowledge base of many psycho-oncology specialists have been showcased. Services, teams and individuals have also adapted creatively and flexibly. Technology has been embraced in many practice and research contexts and is supporting new ways of working. However, there is much to learn about how effective and sustainable these approaches will be in the longer term for both professionals and those living with a beyond a cancer diagnosis. A period of reflection is now needed to allow professionals across all areas to take stock of progress and achievements and consider how best to face future challenges. There is scope to harness opportunities to shape psycho-oncology care and for practitioners and researchers to work together productively. It is vital that BPOS and other cancer focussed professional organisations and societies within the UK and globally work collaboratively to maintain the profile of psycho-oncology, mitigate challenges and make the most of opportunities for the benefit of patients and those who care for them. A number of professional organisations in the UK have responded by generating coronavirus focussed guidance and information.6-10 With the response to COVID-19 constantly evolving, further studies are warranted to understand the practical value of these guidance materials and determine the longer-term impact of the pandemic on psycho-oncology in the coming months and years. This study was designed and conducted by members of the British Psychosocial Oncology Society Executive Committee. We thank Leeds Beckett University Psychology Department ethics committee for reviewing the proposal. We would also like to acknowledge the support provided by wider colleagues, particularly the United Kingdom Oncology Nursing Society and the British Psychological Society Faculty for Oncology and Palliative Care who circulated the survey invite. We are extremely grateful for time survey respondents took to share their experiences and opinions. The data that support the findings of this study are available from the corresponding author upon reasonable request.

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