Exploring the impact of COVID-19 on the psychological well-being of oncology healthcare professionals.

AIMS: To explore how psychological well-being is maintained by healthcare professionals (HCPs) employed in a cancer setting during the COVID-19 pandemic. DESIGN: A qualitative design using diaries and interviews to collect data was used to gain insights into how HCPs managed their well-being during the pandemic. METHODS: Interpretative Phenomenological Analysis (IPA) was used to analyse diaries and interviews completed by 66 HCPs during the second pandemic lockdown period (December 2020-April 2021). A total of 102 HCPs were recruited, drawn from five groups: nursing staff, radiographers, medical staff, allied health professionals (AHPs) (non-radiographers) and support staff. RESULTS: The majority of participants adjusted to the challenges of the pandemic using positive coping strategies, although difficult days required the mobilization of additional resources. Emotion management was regulated through peer relationships, professional roles and the workplace, sustained through communities of practice involving knowledge exchange, shared goals and social interactions. Maintaining high-quality patient care was a source of job satisfaction, providing a route through which positive emotions could be channelled; however, it was juxtaposed with threats to well-being from busy workloads and variable organizational responsiveness. Work routines provided a platform for well-being, underpinned by the sharing of problems and solutions within peer networks. CONCLUSION: This study has highlighted the dynamic nature of well-being amongst HCPs during the pandemic. Well-being interventions should build on the preferred coping strategies of HCPs, focusing on the way individuals coalesce in groups to learn from and support one another. IMPACT: HCPs may experience different psychological responses when exposed to a pandemic situation. This study identifies the strategies used by HCPs to maintain positive psychological well-being within professional roles, whilst adjusting to emerging well-being threats. Key components of HCP's well-being are addressed, which are relevant to clinical practice and the broader healthcare workforce. PATIENT OR PUBLIC CONTRIBUTION: Research team members included public representatives who contributed to the development, methods, data collection and analysis of the study. They supported the development of the Research Assistant by providing mock interview skills training.

Peer Mentors for People with Advanced Cancer: Lessons Learnt from Recruiting and Training Peer Mentors for a Feasibility Randomized Controlled Trial.

Peer mentors may offer distinctive forms of support to people with advanced cancer. Whilst peer mentor programmes are known, little is understood about recruiting and training peer mentors to support those with advanced cancer. The purpose of this study is to determine the feasibility of recruiting and training peer mentors for a novel peer mentor intervention to promote well-being in people with advanced cancer. Feasibility study testing proactive introduction to a trained peer mentor for 12 weeks in the context of a randomized controlled two-arm trial and nested qualitative process evaluation was used. Peer mentors have/had cancer, recruited via an open call. Two-day training included a new bespoke module on coping with cancer. Descriptive recruitment and training data were captured, supplemented by qualitative interviews, analysed thematically. Forty-eight people expressed interest, mostly female (69%), with breast cancer (32%), and recruited via social media (49%). Twelve people completed training, with attrition often due to availability or mentors' own health; many had advanced cancer themselves. They wanted to 'give something back', but also formed supportive bonds with fellow mentors. It is feasible to recruit and train people with lived experience of cancer to be peer mentors, but those with particular characteristics may predominate. Broad social media based recruitment may have merit in widening the pool of potential peer mentors.

Peer support to maintain psychological wellbeing in people with advanced cancer: findings from a feasibility study for a randomised controlled trial.

BACKGROUND: Advanced cancer affects people's lives, often causing stress, anxiety and depression. Peer mentor interventions are used to address psychosocial concerns, but their outcomes and effect are not known. Our objective was to determine the feasibility of delivering and investigating a novel peer mentor intervention to promote and maintain psychological wellbeing in people with advanced cancer. METHODS: A mixed methods design incorporating a two-armed controlled trial (random allocation ratio 1:1) of a proactive peer mentor intervention plus usual care, vs. usual care alone, and a qualitative process evaluation. Peer mentors were recruited, trained, and matched with people with advanced cancer. Quantitative data assessed quality of life, coping styles, depression, social support and use of healthcare and other supports. Qualitative interviews probed experiences of the study and intervention. RESULTS: Peer mentor training and numbers (n = 12) met feasibility targets. Patient participants (n = 12, from 181 eligible who received an information pack) were not recruited to feasibility targets. Those who entered the study demonstrated that intervention delivery and data collection were feasible. Outcome data must be treated with extreme caution due to small numbers, but indicate that the intervention may have a positive effect on quality of life. CONCLUSIONS: Peer mentor interventions are worthy of further study and researchers can learn from these feasibility data in planning participant recruitment and data collection strategies. Pragmatic trials, where the effectiveness of an intervention is tested in real-world routine practice, may be most appropriate. Peer mentor interventions may have merit in enabling survivors with advanced cancer cope with their disease. TRIAL REGISTRATION: The trial was prospectively registered 13.6.2016: ISRCTN10276684 .

A revised model for coping with advanced cancer. Mapping concepts from a longitudinal qualitative study of patients and carers coping with advanced cancer onto Folkman and Greer's theoretical model of appraisal and coping.

OBJECTIVE: To explore whether the Folkman and Greer theoretical model of appraisal and coping reflects the processes used by people living with advanced cancer. METHODS: Interview data from a longitudinal qualitative study with people with advanced (stage 3 or 4) cancer (n = 26) were mapped onto the concepts of the Folkman and Greer theoretical model. Qualitative interviews conducted in home settings, 4-12 weeks apart (n = 45) examined coping strategies, why people thought they were effective, and in what circumstances. Interviews were coded and analysed using techniques of constant comparison. RESULTS: Mapping coping strategies clearly onto the problem- or emotion-focused elements of the model proved problematic. Fluctuating symptoms, deterioration over time, and uncertain timescales in advanced cancer produce multiple events simultaneously or in quick succession. This demands not only coping with a single event but also frequent repositioning, often to an earlier point in the coping process. In addition, there is substantial ongoing potential for some degree of distress rather than purely "positive emotion" as the final stage in the process is death with several points of permanent loss of capability in the interim. CONCLUSIONS: The Folkman and Greer theoretical model is helpful in deconstructing the discrete "problem-focused" or "emotion-focused" coping mechanisms participants describe, but its formulation as a linear process with a single, positive, outcome is insufficiently flexible to capture the evolution of coping for people with advanced cancer.

Being in safe hands: Patients' perceptions of how cancer services may support psychological well-being.

AIMS: To explore how cancer services may positively promote and support patients' well-being throughout treatment. Specifically to identify components of care that are important to patients and meet their needs. BACKGROUND: Patients commonly experience stress and uncertainty during their cancer journey which can have a negative impact on their psychological health and quality of life. Comparatively, little is known about how patients may experience positive well-being during their treatment experience. DESIGN: Qualitative study using semi-structured interviews. METHODS: Interviews were conducted between 2014 - 2015 with a purposive sample of 30 individuals who were at the beginning, middle or end of treatment for lung, colorectal and head and neck cancer. The majority were outpatients and receiving radiotherapy, chemotherapy or a combination of these. The recordings were analysed using thematic analysis. RESULTS: Patients may obtain a range of positive health benefits derived from contact with staff, patients and public. Positive emotional gains were based on "being in safe hands" and part of the collective effort to eradicate cancer. This appeared to assist patients achieve favourable treatment responses, however, a range of factors encouraged and hindered them to express concerns. CONCLUSION: Interactions with staff, patients and the hospital environment supported well-being in those receiving cancer treatment. Findings demonstrate additional areas for research including the development of interventions to facilitate peer support and the implementation of communication strategies that promote well-being.

The construction of help during radiotherapy: Redefining informal care.

OBJECTIVES: This study will explore how help is constructed during and following radiotherapy for patients with cancer. METHODS: Grounded theory methods were used in the study to explore the way in which family members and friends constructed a role for themselves in relation to patients receiving radiotherapy. A total of 22 helpers were interviewed. Patients were being treated for a range of cancers including breast, prostate, colorectal, and head and neck. RESULTS: Respondents in this study consistently defined themselves as "helpers" rather than "carers." While radiotherapy as a treatment modality was mostly seen as noninvasive, the cancer diagnosis cast a long shadow over the lives of helpers and patients creating a separation in longstanding relationships. Helpers experienced this separation as "otherness." Help became an important vehicle for bridging this separation. Individuals developed different ways of knowing about the patient as the basis for providing help. Two different types of help were identified in this study: the behind the scenes, largely invisible work that helpers undertook to help the patient without their knowledge and the explicit visible help that was much more commonly negotiated and discussed between helpers and patients. CONCLUSIONS: The study provides the basis for a greater understanding on the part of professionals into the impact of diagnosis and radiotherapy treatment on family and friends. In doing so, the study identifies opportunities for the experience of helpers to be recognised and supported by professionals.

A study of childhood cancer survivors' engagement with long-term follow-up care: 'To attend or not to attend, that is the question'.

PURPOSE: In the UK, there are over 40,000 childhood cancer survivors (CCS); this figure grows approximately 1300 annually. Two-thirds are at risk of developing serious disabling or life-threatening conditions due to adverse late effects of the cancer or treatment received in childhood. Life-long, follow-up care for the surveillance and management of late effects is recommended. This study explored CCS' views and experiences of long-term follow-up (LTFU) care within a cancer centre. METHODS: Paper questionnaires (n = 113) and qualitative interviews (n = 13). RESULTS: The majority (n = 83, 80%) of CCS reported being satisfied with their LTFU care and felt that it was important to attend long-term survivorship follow-up (n = 97, 86%). However, some were not well informed about their cancer treatment history, purpose for attending the clinic or the potential for late effects. Barriers associated with LTFU included; provision of information, lack of interpersonal relationships, practical and logistic challenges. CONCLUSIONS: Barriers identified can be addressed through strategies including provision of verbal and written information and care plans to increase CCS' knowledge of their cancer history, risk of late effects and the purpose of LTFU care, both at transition and throughout their survivorship journey; patient-centred services that enhance patient choice and flexibility of access to multiple specialities; and use of risk stratified pathways to encourage supported self-management based on cancer type, co-morbidity, and level of professional involvement required. Improving regular provision of information at critical time-points, and exploring a flexible, patient-centred delivery of LFTU care based on risk, could increase attendance and self-management in CCS.

Coping Well with Advanced Cancer: A Serial Qualitative Interview Study with Patients and Family Carers.

OBJECTIVES: To understand successful strategies used by people to cope well when living with advanced cancer; to explore how professionals can support effective coping strategies; to understand how to support development of effective coping strategies for patients and family carers. DESIGN: Qualitative serial (4-12 week intervals) interview study with people with advanced cancer and their informal carers followed by focus groups. The iterative design had a novel focus on positive coping strategies. Interview analysis focused on patients and carers as individuals and pairs, exploring multiple dimensions of their coping experiences. Focus group analysis explored strategies for intervention development. PARTICIPANTS: 26 people with advanced (stage 3-4) breast, prostate, lung or colorectal cancer, or in receipt of palliative care, and 24 paired nominated informal/family carers. SETTING: Participants recruited through outpatient clinics at two tertiary cancer centres in Merseyside and Manchester, UK, between June 2012 and July 2013. RESULTS: 45 patient and 41 carer interviews were conducted plus 4 focus groups (16 participants). People with advanced cancer and their informal/family carers develop coping strategies which enable effective management of psychological wellbeing. People draw from pre-diagnosis coping strategies, but these develop through responding to the experience of living with advanced cancer. Strategies include being realistic, indulgence, support, and learning from others, which enabled participants to regain a sense of wellbeing after emotional challenge. Learning from peers emerged as particularly important in promoting psychological wellbeing through the development of effective 'everyday', non-clinical coping strategies. CONCLUSIONS: Our findings challenge current models of providing psychological support for those with advanced cancer which focus on professional intervention. It is important to recognise, enable and support peoples' own resources and coping strategies. Peer support may have potential, and could be a patient-centred, cost effective way of managing the needs of a growing population of those living with advanced cancer.

Searching for the new normal: exploring the role of language and metaphors in becoming a cancer survivor.

PURPOSE: This qualitative exploratory study was grounded in local patient and service user experiences and was designed to investigate how the language and metaphors of cancer influence personal and social adjustment after completion of a course of treatment. METHODS: The study employed a focus group design, in which eighteen people, recruited through regional networks and support groups, participated. Meetings elicited participants' stories and focused discussion on key words and common phrases in the cancer lexicon. Data from transcribed focus group recordings were analysed thematically and organised into descriptive categories concerned with the interpretations of common terms and how these influenced the management of identity and emotions. RESULTS: The thematic categories emphasised the importance of language in the way participants managed their illness and sought to control their feelings and their interactions with others. Interpretation of findings revealed a strong central idea linking participants' accounts, which was that language, metaphor and euphemism are central to adjustment and the forging of an altered identity as a survivor of cancer diagnosis and treatment. CONCLUSIONS: The findings are consistent with what is already known about the language and metaphors of cancer, with language being an important mechanism for managing uncertainty. From participants' accounts it also appears that there may be subtle but important differences in professional and lay understandings of cancer language and metaphor. This suggests a need for oncology nurses to elaborate their broad understanding of communication skills and move toward a more detailed understanding of the language used during interactions with patients.

Patients' experiences of living beyond colorectal cancer: a qualitative study.

PURPOSE OF THE RESEARCH: This paper is a report of a study of the experiences of individuals with colorectal cancer in the period following their cancer treatment and the physical, psychological and social aspects associated with adjusting to everyday life. METHODS AND SAMPLE: Qualitative interviews using a phenomenological approach were conducted with a purposive sample of 13 individuals who had completed active curative treatment for colorectal cancer. RESULTS: Study findings suggest that colorectal cancer survivors employ a broad range of techniques and approaches to manage adjustment to everyday life such as goal-setting, managing informal networks and adopting strategies for physical and emotional recovery. Personal interests were used to create a sense of meaning and through the cultivation of altruistic and utilitarian outlooks on life, positive emotional gains were obtained. CONCLUSIONS: Colorectal cancer survivors employ personal strategies for managing life in the survivorship period following cancer treatment. The study findings demonstrate additional areas for exploration such as the effect of altruism on adjustment and the relationship to other groups of cancer survivors.

Protocol for a longitudinal qualitative interview study: maintaining psychological well-being in advanced cancer--what can we learn from patients' and carers' own coping strategies?

INTRODUCTION: People with advanced cancer and their carers experience stress and uncertainty which affects the quality of life and physical and mental health. This study aims to understand how patients and carers recover or maintain psychological well-being by exploring the strategies employed to self-manage stress and uncertainty. METHODS AND ANALYSIS: A longitudinal qualitative interview approach with 30 patients with advanced cancer and 30 associated family or informal carers allows the exploration of contexts, mechanisms and outcomes at an individual level. Two interviews, 4-12 weeks apart, will not only enable the exploration of individuals' evolving coping strategies in response to changing contexts but also how patients' and carers' strategies inter-relate. Patient and Carer focus groups will then consider how the findings may be used in developing an intervention. Recruiting through two major tertiary cancer centres in the North West and using deliberately broad and inclusive criteria will enable the sample to capture demographic and experiential breadth. ETHICS AND DISSEMINATION: The research team will draw on their considerable experience to ensure that the study is sensitive to a patient and carer group, which may be considered vulnerable but still values being able to contribute its views. Public and patient involvement (PPI) is integral to the design and is evidenced by: a research advisory group incorporating patient and carers, prestudy consultations with the PPI group at one of the study sites and a user as the named applicant. The study team will use multiple methods to disseminate the findings to clinical, policy and academic audiences. A key element will be engaging health professionals in patient and carer ideas for promoting self-management of psychological well-being. The study has ethical approval from the North West Research Ethics Committee and the appropriate NHS governance clearance. REGISTRATION: National Institute for Health Research (NIHR) Clinical Studies Portfolio, UK Clinical Research Network (UKCRN) Study number 11725.