key: cord-0809187-jqcqkmav authors: Drury, Dr Amanda; Eicher, Professor Manuela; Dowling, Dr Maura title: Experiences of Cancer Care in COVID-19: Phase 1 Results of a Longitudinal Qualitative Study date: 2021-05-27 journal: Int J Nurs Stud Adv DOI: 10.1016/j.ijnsa.2021.100030 sha: c6a1486b2abd0db6e909b0ed5238b70bf6277221 doc_id: 809187 cord_uid: jqcqkmav BACKGROUND: Healthcare services have responded to the challenges of service delivery during COVID-19 with telehealth and hybrid models of care. However, there is limited understanding of the experiences of care among people affected by cancer and how their experiences may change and evolve against the shifting landscape of COVID-19 incidence, mortality, vaccination and refinements in service delivery. OBJECTIVES: This study explores the experiences of cancer care among people affected by cancer in Ireland during the COVID-19 pandemic. This paper presents the results of the initial cross-sectional semi-structured interviews and the longitudinal qualitative research design which will be employed in this study. DESIGN: A longitudinal descriptive qualitative study. SETTING: Ireland PARTICIPANTS: People living with and after cancer or caring for someone with cancer during the COVID-19 pandemic. METHODS: Participants were recruited to the study via social media advertisements and consented to participate in up to three semi-structured interviews between January and July 2021. Initial semi-structured interviews were conducted with 16 participants in January 2021. Participants completed measures of resilience (2-item Connor‐Davidson Resilience Scale) and distress (The National Comprehensive Cancer Network Distress Thermometer). Interviews were recorded, transcribed and analyzed thematically. RESULTS: Participants reported low levels of distress and moderate to high levels of resilience on average. Three themes were generated from analysis of the first phase of cross-sectional interviews. Participants described a counterbalance of being cautious of infection and keeping safe through prevention and shielding strategies. Although hospitals felt safe and were working efficiently, some participants felt COVID-19 had compromised person-centredness and empathy in care. While participants valued the restrictions being taken to minimize infection risk, substitution of face-to-face appointments with telehealth services and attending essential face-to-face appointments alone restricted participants' access to professional and social support. Despite this, many participants felt public health measures to reduce transmission of COVID-19 had created a sense of not missing out, feeling safe and reduced difficult social interactions requiring explanation of their diagnosis. CONCLUSIONS: There is an opportunity to learn from the experiences of healthcare delivery from the perspectives of people affected by cancer during the COVID-19 pandemic. The results highlight the complexities and dualities of living with, after or caring for someone with cancer during the COVID-19 pandemic. Opportunities for longitudinal qualitative research to explore the evolving experiences, concerns and persistent and emerging unmet information and clinical needs within the rapidly changing socio-political, socio-cultural and healthcare contexts of the COVID-19 pandemic are highlighted. The COVID-19 pandemic has posed severe challenges to healthcare systems since it was declared an international public health emergency by the World Health Organization in January 2020. To reduce the spread of COVID-19, protect those vulnerable to the risks of COVID-19, and ensure adequate allocation of human resources to manage COVID-19, non-urgent cancer appointments were partially postponed and transitioned to telephone/telemedicine appointments where possible in the initial months of the pandemic (Nekhlyudov et al., 2020 , Weinkove et al., 2020 . People with cancer are considered particularly vulnerable to severe COVID-19 complications (Liang et al., 2020 . The reallocation of healthcare resources in response to COVID-19 have impacted health service delivery for chronic illnesses, including oncology and haematology services . One study of haematology activity in a tertiary hospital in the UK between January and April 2020 highlighted reductions in 1) the number of patients referred for specialist haematology review (-57%); 2) the number of patients diagnosed with haematological malignancies (-54%); and 3) patients with haematological malignancies treated with chemotherapy (-24%) . Early reports of cancer patients' experiences of COVID-19 have highlighted a higher perceived risk of infection, fear of infection and more severe complications compared to healthy controls (Casanova et al., 2020) . Delays in diagnostic, treatment and survivorship care pathways invariably create additional distress for people affected by cancer. A prospective cross-sectional study from an Italian cancer centre in April 2020 suggested that more than one-third of lymphoma patients self-report anxiety (36%), depression (31%) and post-traumatic stress disorder (36%) (Romito et al., 2020) . One year on from the declaration of the COVID-19 pandemic, there is emerging evidence suggesting variable trajectories of physical and mental health, resilience and life satisfaction outcomes within the general population (Losada-Baltar et al., 2021 , Sutin et al., 2021 . Studies of the experiences and needs of people affected by cancer during the COVID-19 pandemic have been predominantly cross-sectional (Casanova et al., 2020 , Chaix et al., 2020 , Romito et al., 2020 . However, cross-sectional studies do not provide an adequate understanding of the impact of rapid changes in national policies to suppress transmission of . Longitudinal approaches provide a unique opportunity to understand the perceptions of people affected by cancer with regard to perceived threats of COVID-19 during peaks and troughs in national incidence rates, the rollout of vaccinations, and changes in care arising from transitioning models of healthcare delivery to sustain delivery of healthcare services for chronic illnesses. Longitudinal qualitative research permits exploration of experiences of change and stability over time (Calman et al., 2013 , Saldana, 2003 . A longitudinal qualitative approach offers an unprecedented opportunity to understand trajectories of distress, resilience and experiences of care among people affected by cancer over a six-month period during the COVID-19 pandemic. A longitudinal qualitative approach will provide insights into the socio-demographic, health systems, public health, political and socio-cultural factors, which may influence levels and trajectories of resilience, distress and unmet needs among people affected by cancer during COVID-19. Furthermore, the longitudinal approach may provide additional insight into the experiences of transitions in cancer care during the COVID-19 pandemic, including the transition from treatment to follow-up care. Learning from participants' experiences and processes of adaptations to cancer service delivery and the consequences of changes in cancer care during COVID-19 may further support the development and implementation of sustainable and acceptable models of care for people affected by cancer at all points in the cancer continuum. This longitudinal qualitative study includes three phases and aims to describe the evolution of experiences of cancer care in Ireland during COVID-19 from the perspectives of people living with and beyond cancer. This study will be conducted over a six-month period in Ireland, which will capture information against the changing political and socio-cultural context of COVID-19 in Ireland, including periods of high and low COVID-19 incidence and mortality, changing public health measures to control the transmission of COVID-19, and the rollout of the COVID-19 vaccination programme. This study will: 1. Explore cancer patients' and survivors' experiences of cancer care over a 6-month study period during the COVID-19 pandemic. Understand cancer patients' and survivors' satisfaction with cancer care over a 6-month period during the COVID-19 pandemic. Explore issues influencing cancer patients' and survivors' levels and trajectories of distress and resilience over a 6-month period during the COVID-19 pandemic. This paper presents the cross-sectional results of the first phase of interviews. This paper presents the longitudinal qualitative research design adopted for this study and will discuss the directions for data collection and data analysis in subsequent phases of the longitudinal analysis. Finally, we discuss the opportunities of a pragmatic longitudinal approach to data collection and analysis of subsequent phases, designed to build upon and enhance knowledge and understanding of cancer patients' and survivors' experiences of cancer care in Ireland during the COVID-19 pandemic, with a particular focus on the impact of changes in the socio-political and socio-cultural landscape of COVID-19. This longitudinal descriptive qualitative study invited people living with and beyond melanoma, breast, prostate, lung and colon cancer and their caregivers to participate in up to three semistructured interviews to understand and describe their care experiences during COVID-19 (Saldana, 2003 , Sandelowski, 2000 , Sandelowski, 2010 . The target population represents the five most common incident cancers in Ireland (National Cancer Registry Ireland, 2020). All participants are adults, aged 18 years or older, receiving systemic anti-cancer treatment or undergoing active surveillance during the COVID-19 pandemic, and able to provide informed consent to participate in telephone interviews. Recruitment to the initial phase of this study was completed in January 2021. Participants were invited to participate via advertisement on social media platforms. Potential participants were invited to submit an expression of interest to participate in the study. Twenty-two people expressed interest in participating and were emailed a letter of invitation, participant information leaflet and consent form. Two of those who expressed interest did not meet the study inclusion criteria, three did not respond further, and one withdrew before their scheduled interview. Participants who returned a signed consent form were subsequently contacted by phone to arrange a telephone interview at a mutually convenient time. This study received ethical approval from the National University of Ireland Galway Research Ethics Committee (Ref: R20.Jun.04). Sixteen participants consented to participate in up to three semi-structured telephone interviews at T1, T2 and T3, and participated in their first interview between January and February 2021. Interviews were guided by a semi-structured interview schedule exploring participants' perceptions of changes in the continuity of care, perceived risks/benefits of new methods of care delivery, information needs, and worries about cancer relating to COVID-19 (Table 1 ). An analysis of online narratives regarding COVID-19 in cancer forums provided a framework for this study and informed the development of the T1 interview schedule (Colomer-Lahiguera et al., 2021) . The items addressed in the T1 interview schedule will form the basis for interviews at each timepoint to ensure consistency in the study. However, interview schedules utilized at T2 and T3 will include additional items, which will: 1) explore participants' perspectives on the influence of contextual and environmental factors on their distress, resilience and experiences of cancer, 2) interrogate results of previous phases in greater depth, 3) evaluate the evolution of individual concerns and needs over the course of the study period. During each interview, participants are invited to complete a brief questionnaire to evaluate their distress, resilience and demographic characteristics. The National Comprehensive Cancer Network Distress Thermometer (NCCN-DT) (Roth et al., 1998 ) is a validated self-report screening tool to measure psychosocial distress in cancer settings (Donovan et al., 2014 , National Comprehensive Cancer Network, 2014 . The NCCN-DT consists of a one item visual analogue scale (0, "no distress" to 10, "extreme distress") which ask participants to "Please circle the number [0-10] that best describes how much distress you have been experiencing in the past week including today." The 2-item Connor-Davidson Resilience Scale (CD-RISC2) (Vaishnavi et al., 2007) evaluates participants' resilience via two items: 1) "able to adapt to change" and 2) "tend to bounce back after illness or hardship") and has been validated based on the complete CD-RISC survey. Both surveys items have 5-point Likert scale response (0, "not at all true" to 4, "true nearly all of the time"). An overall CD-RISC2 score is calculated from the sum of both items, which has a possible range of 0-8; higher scores reflect higher levels of resilience. All interviews at T1 were conducted by a single researcher, an oncology nurse experienced in qualitative research methods and cancer care (MD). This approach serves to enhance relationships and build trust between participants and the researcher, promoting participant retention and enhanced credibility of study findings (Lincoln and Guba, 1985) . Fifteen interviews were undertaken by telephone and one by Microsoft teams. Interview times ranged from 12-48 minutes. Interviews were recorded and transcribed verbatim to assist with data analysis. Field notes were recorded immediately after each interview to support data analysis and researcher reflexivity. Member checking is operationalized within this study through participants' validation of transcripts and reviewing the summarised results of the thematic analysis at each timepoint (Calman et al., 2013) . After T1 interviews, all participants received a copy of their interview transcript and were provided with an opportunity to amend or clarify their responses prior to data analysis. At T1, one participant requested that her fears related to COVID be emphasized in the analysis. One participant requested minor changes to her transcript to ensure that she or her family members could not be identified. To enhance the depth of analysis and validation of the study findings, participants will receive a summary of the thematic analysis of interviews conducted at the previous timepoint. Methodological rigour in this study was ensured using strategies to address the credibility, dependability, transferability and confirmability of the research (Table 2 ) (Lincoln and Guba, 1985) . Table 2 Application of Qualitative Rigour (Lincoln and Guba, 1985) Criterion Application Credibility Research team members experienced in and trained in qualitative research. The use of reflexive journaling and debriefing with the research team promote critical evaluation and reflection on data collection and analysis. Prolonged engagement between the researcher and research participants, building trust and enhancing engagement with interviewees. Recording and verbatim transcription of interviews. Transparent reporting of study protocol enables assessment of the research process and future replications of the study. Member checking of interview transcripts and cross-sectional results at each timepoint to support validation of transcripts and study results, promoting more in-depth discussion of cross-sectional findings at subsequent timepoints. Systematic audit trail maintained in NVivo using coding, memo and annotation functions to detail decisions relating to analysis. Ecological validation is facilitated at each timepoint, with a description of the social, political and epidemiological contexts of COVID-19 in the Irish context at each of the interview timepoints. Use of participant quotations to illustrate and support analysis and interpretation of the data. Relating findings of the study to existing literature and meta-analysis of results from concurrent cross-sectional studies conducted in Europe and North America. Use of reflexive journaling to explore the influence of the researcher at each step of the research process. Rigorous review of the interview transcripts and analysis according to the Braun and Clarke (2006) Thematic Analysis Framework. Systematic audit trail maintained in NVivo using coding, memo and annotation functions to detail decisions relating to analysis. Analysis of qualitative data generated within this study is guided by the Braun and Clarke Thematic Analysis Framework (Braun and Clarke, 2006) and managed in NVIVO 12. Aligning with the recommendations of Calman et al. (2013) , qualitative data are analyzed cross-sectionally at each timepoint to generate a summary of the cross-sectional thematic analysis, which will form the basis for member checking, and inform the interview guide at T2 and T3. Within this study, time and change are contextual, and against the shifting landscape of COVID-19, are subject to changes in response to shifting political, socio-cultural and healthcare priorities (Saldana, 2003) . Consequently, context is a core component of longitudinal data analysis within this study. Longitudinal qualitative data will be analyzed within-and between-cases at T2 and T3 (Table 1 ). Longitudinal within-case analysis will capture changes over time with respect to participants' trajectories of distress, resilience, and healthcare needs and experiences. Participants' responses to NCCN-DT and CD-RISC items at T1, T2 and T3 will be analyzed descriptively to identify sub-groups experiencing high or low distress or resilience at each timepoint and subgroups who report trajectories of increasing, decreasing or static (high or low) distress and resilience between T1 and T3 (longitudinal). NCCN-DT and CD-RISC data will provide context for longitudinal sub-group analysis of qualitative data to explore the issues discussed by participants which may influence trajectories of distress or resilience longitudinally during COVID-19 (trajectory analysis) (Grossoehme and Lipstein, 2016) . Trajectory analysis will also be informed by transitions in the landscape of COVID-19 and social and healthcare policies and mandates over the course of the study to elicit factors which may influence participants' experiences of cancer care and levels of distress and resilience over time. To facilitate longitudinal analysis, time-ordered sequential matrices will be generated to facilitate trajectory analysis exploring the evolution of themes over the timeframe of the study and to support analysis of changes within the context of COVID-19 and participants' distress and resilience over time (Grossoehme and Lipstein, 2016) . As this represents an exploratory study of an emerging phenomenon, the qualitative data from T1 interviews were coded inductively, and the results of thematic analysis of the data are presented in this paper. Subsequent interviews will be analyzed cross-sectionally at each timepoint, and codes will be reviewed, organized and reorganized into themes and subthemes. The coding framework developed at T1 will provide a framework for cross-sectional analysis at T2 and T3. Where new codes are identified at subsequent timepoints, they will be assigned new codes and assimilated into analysis at each timepoint. In the final stages of analysis, data will be reanalyzed deductively, cognizant of themes identified in the longitudinal analysis, to ensure they represent participants' contributions. Themes that are insufficiently supported by the data will be discarded, and each theme will be defined, named and written up. Sixteen participants were recruited to this study and interviewed in January 2021 (T1). All consented to be interviewed again at T2 and T3. One participant was male. The majority of participants had a diagnosis of breast cancer (n=12); the remaining participants had a diagnosis of colorectal cancer (n=3), and one person was caring for their father who had a diagnosis of lung cancer (n=1). The majority of participants were diagnosed between six and twelve months prior to the commencement of T1 interviews (n=10), and nine reported they were in remission from cancer at the time of T1 interviews (Table 3) . T1 interviews commenced on January 18 th , 2021. At the time of T1 interviews, Ireland had the highest rate of COVID-19 infections internationally and had entered its third lockdown since March 2020. Acute hospitals across Ireland were in surge capacity, and mortality rates were the highest since the pandemic began. A new, more transmissible strain of COVID-19 (VUI-202012/01) accounted for approximately 60% of incident cases at the time of T1 interviews. The nation's mood had shifted to fear; anecdotal reports from cancer services highlighted increasing demand for psychosocial cancer support (Greally, 2021) . During the T1 data collection period, daily mortality reached the highest point in Ireland since the pandemic began (February 2 nd , 2021; n=101), and the government announced further travel restrictions, including curtailment of overseas travel. Against the backdrop of increasing incidence and mortality, the rollout of the COVID-19 vaccination commenced in late December 2020. By the time of the final T1 interview on February 17 th , 2021, over 85s living in the community were beginning to receive their first vaccination. By this time, the number of people with COVID-19 in intensive care units was also declining. However, Irish news media was beginning to describe concerns about the longer-term impacts of successive lockdowns, including the potential 'cancer tsunami' which would result from delays in people seeking care for potential signs and symptoms of cancer. This paper presents the results of the thematic analysis of T1 interviews. Three themes were generated from T1 interviews describing the experiences of COVID-19 and cancer care from the perspective of people living with and affected by cancer. On average, CD-RISC2 scores indicated moderate to high levels of resilience within this sample ( ̅ = 6.5; SD=1.6, range 2-8) ( Table 4 ). Fourteen participants stated that they were able to adapt to change and bounce back after illness or hardship, very often or nearly all the time (88%). However, one participant with metastatic breast cancer reported she was rarely able to adapt to change and bounce back after illness or hardship and also reported the highest distress score on the NCCN-DT. Distress scores within the sample were low on average ( ̅ ) =3.4; SD=2.2, range 1-9). Four participants reported moderate levels of distress, eight reported low levels of distress, and three participants reported no distress. (5) *…+ they *children+ wanted to go out and play with the kids out the back, as time went on it was hard to keep them in. We were trying our best to keep them away from other people. We were told you know that was important. But that was the biggest challenge as opposed to anything else. (3) There Despite implementing shielding measures, for some participants, admission to hospital or attendance at hospital appointments was unavoidable. Several participants described anxiety and distress at the prospect of attending these appointments and being admitted to hospital. I probably was a bit more concerned when I was in hospital after the surgery as well just you know even within the ward. None of the patients were wearing masks and you know there was a lady in the bed, you know in the next bed to me who had a cough you know, not COVID but just, you know, things like that. I think you know would make you a bit more on edge, which if it was another year you probably wouldn't think anything of it. But again, you know it's only smaller things like that. (14) Those who attended hospital appointments spoke positively of safety measures taken by hospitals to protect patients, including pre-appointment COVID questionnaires, use of personal and protective equipment, and visibility of cleaning and disinfection in public areas. One participant suggested fears about COVID-19 in hospitals was the uncertainty about how compliant other patients were with personal protective equipment and public health guidelines to minimise the spread of COVID-19. However, many suggested that a benefit of the restrictions imposed by COVID-19 was that few patients were attending the hospital, reducing delays during appointments. Some participants alluded to their awareness of others who experienced cancellations and delays in treatment and their concerns about access to systemic treatment and delays for surgery. However, no participant reported experiencing treatment delays or altered treatment regimens as a result of the pandemic. Several participants also acknowledged how the variety of peer support and cancer support services that would be available under normal circumstances were no longer accessible to them. Some of those who had received cancer treatment before the pandemic contrasted the opportunities to speak with other patients and have family members present with them during appointments, with the isolation and loneliness of appointments where they attended alone or were distanced from other patients. While family members were acknowledged as a critical source of support, the shrinking network of support meant that family members assumed a disproportionate burden for support and care of the person with cancer, both due to reduced formal supports and isolation from wider family and social networks. . And they shut down kind of petty much completely other than you know phone support. But they offer a whole range of other services, and I wasn't able to avail of any of those and they also have services for children and partners as well. None of that was available. (11) We did as much as we could and fair play to my mother, God love her, like, she did a mighty job trying to kind of, I'd leave; you know, medicines, or whatever, at the door, and she would kind of, she would be up at night with him you know when he was sick. So she has done amazingly, the poor woman. Theme 3: Not Missing Out Despite the challenges described by participants, many described a sense that they were not missing out due to COVID-19, as everyone had to live within the same restrictions. Many felt that COVID-19 had introduced a new-found perspective on life, whereby they appreciated the opportunity to foster closeness with their families. Despite the isolation associated with cocooning, several participants suggested that staying at home removed social confrontations prompted by their appearance, which placed pressure on them to explain their diagnosis. This gave participants a sense of control over the disclosure of their diagnosis, which otherwise would have been visible to the public. The T1 interview findings reveal that irrespective of being on treatment or in follow-up, all participants were fearful of contracting COVID-19 and took measures to stay safe. They valued the restrictions being taken in their treatment centres and appreciated that follow-up had to shift away from clinic visits. However, for some, the lack of face-face consultations affected support systems and opportunities to ask questions. Moreover, two participants strongly believed that COVID-19 was being used as an excuse by healthcare professionals to minimize interactions with patients and avoid intimacy and relationship building. Not being allowed to have a family member with them during treatment was a source of isolation for participants having treatment. The loss of wider support services in the community was also isolating for many. However, a sense of 'not missing out' was strongly expressed across the interviews with everyone else also staying at home and restricted in their movements. Finally, not having to face the public and explain their cancer diagnosis brought relief to some. This study presents a snapshot of the perceptions and experiences of people with cancer about their care and support during a period of high incidence, high mortality and national lockdowns in Ireland in 2021. Participants' narratives of their perceptions of COVID-19 reflect their recognition of increased risks of severe COVID-19 complications among people with cancer (Casanova et al., 2020 , Liang et al., 2020 . Participants' discussion of their perceived risks and fears related to COVID-19 were punctuated by discussions of strategies to reduce the risk of contracting COVID-19 and reflect the findings of quantitative studies of people affected by cancer conducted during the initial wave of COVID-19 in Europe (Casanova et al., 2020 , Chaix et al., 2020 , Romito et al., 2020 . Congruence in the results of studies conducted at sequential points during the COVID-19 pandemic may reflect parallels in the socio-political and socio-cultural contexts and widespread public apprehension and uncertainty within successive waves of the pandemic. Nevertheless, despite participants' concerns regarding COVID-19, the majority reported high levels of resilience, while more than two-thirds of participants reported no or low levels of distress. This study adds to the existing evidence regarding the impact of COVID-19-related curtailments in cancer services (Romito et al., 2020 . While restrictions in cancer services may contribute to distress among people with cancer, it is difficult to determine whether distress is a consequence of perceived risks of COVID-19, shortcomings in access to supportive care services, or a combination of both (Romito et al., 2020 . This study suggests that the strategies implemented by healthcare organizations to reduce risks of transmission were welcomed by cancer patients and contributed to feelings of safety when attending clinical settings when required. However, many described counter-concerns about restrictions in access to professional and peer support and a perception that COVID-19 was a scapegoat for shortcomings in cancer-related care, particularly related to communication and person-centred care. Prior to the pandemic, eHealth interventions, including telemedicine, videoconferencing and telephone support were identified as an emerging innovation with the capacity to address emerging demands for healthcare associated with ageing, multimorbidity and workforce shortages (European Commission, 2012 , van Gemert-Pijnen et al., 2012 . Indeed, eHealth interventions appear to enhance access to care and support improved outcomes among people affected by cancer. However, there is limited evidence regarding the clinical effectiveness of eHealth interventions (Haase et al., 2020) . In studies of cancer patients' satisfaction with telemedicine appointments in the first months of the pandemic, on average, patients were satisfied with healthcare (Layfield et al., 2020 , Palandri et al., 2021 . However, less than one-third of haematology patients indicated they would be willing to continue telemedicine appointments for routine care beyond the pandemic (Palandri et al., 2021) . The results of this study add to this evidence, suggesting telemedicine may not provide sufficient access to professional and peer support for people with cancer. However, the onset of the pandemic provides a unique opportunity to learn from the rapid implementation of telemedicine services, which can inform the design and adaptation of models of care in the longerterm which are responsive to the needs of people affected by cancer and which facilitate access to high-quality cancer care beyond the pandemic. Longitudinal qualitative research approaches present a unique opportunity to explore the evolving experiences, concerns and persistent and emerging unmet information and clinical needs of people affected by cancer during the COVID-19 crisis, including changing attitudes and perceptions of care. A longitudinal approach provides opportunities to obtain insights into long-term sources of distress and unmet need which persist as the pandemic progresses, and potentially beyond the pandemic as healthcare services adopt new approaches to healthcare delivery in the aftermath of COVID-19. Integration of quantitative measures of distress and resilience within this study will permit a more in-depth analysis of issues that may affect participants' trajectories of distress and resilience during the period of this study. In addition, the longitudinal approach adopted in this study will permit contextualized approaches to thematic data analysis, considering the influence of socio-political and socio-cultural factors, including stabilizing incidence and mortality rates; rollout of vaccinations to people vulnerable to complications of COVID-19; and refinements in service delivery models in response to emerging evidence, risk and preferences of people affected by cancer. While longitudinal qualitative methods offer an opportunity to understand trajectories of distress, resilience and experiences of care among people living with cancer, it is not without limitations. Recruitment, retention and sustained engagement are core considerations in the design of longitudinal qualitative research studies (Calman et al., 2013) . While six months may be considered a short timeframe for a longitudinal qualitative study, the timing of data collection was selected to minimize the duration of commitment required from participants and capture anticipated developments in the COVID-19 context in Ireland, including periods of high and low incidence and mortality and the vaccination rollout trajectory. To support retention and engagement of participants over the six-month period of data collection, participants will receive 1) a copy of their transcripts four weeks after each interview, and 2) a summary of the thematic analysis of interviews between seven and ten weeks after their interview. Sharing the thematic analysis with participants at this time will allow each person between two and four weeks to read and consider the results of the previous round of interviews before they participate in their next interview. This strategy supports participants' sustained engagement according to their preferences and the development and validation of thematic findings. Furthermore, the sharing of cross-sectional findings will facilitate a more in-depth exploration and critique of common themes at subsequent interviews, as participants will be given time to review and reflect on findings from previous timepoints. Reflective notes kept at the time of the first interview were also useful to maintain a record of key aspects of discussion within individual interviews which will be explored in subsequent interviews. A significant limitation of this study is the representation of women (n=15) and people living with and after breast cancer (n=12) within the sample, and the under-representation of caregivers (n=1). As a result, the findings of this study may not be representative of the experiences and needs of people living with or after or caring for people with other forms of cancer. While this study aimed to sample a heterogeneous sample of people living with and after cancer and caring for people with cancer, the sampling strategy is limited by the online approach to recruitment and constraints of self-selection. Furthermore, while this study will collect quantitative data regarding participants' resilience and distress, this data will be used to characterize the sample and provide context for cross-sectional and longitudinal analysis of qualitative data. Due to the small sample size, the results of descriptive statistical analysis are not generalizable. The cross-sectional results of the first phase of this longitudinal qualitative research study provide insight into the complexities of living with or after cancer during the COVID-19 pandemic. This study highlights opportunities for the use of longitudinal qualitative research to explore the evolving experiences, concerns and persistent and emerging unmet information and clinical needs within the rapidly changing socio-political and socio-cultural context of the COVID-19 pandemic. The findings highlight the duality of experiences within and between people living with cancer; a counterbalance of positive and negative impacts of the COVID-19 pandemic; of feeling afraid and feeling safe; of new-found efficiencies in services with shortcomings in access to holistic care and support. Telephone and telemedicine services have been implemented rapidly to ensure the safety and protection of people with cancer against COVID-19; however, findings from the initial phase of this study suggest that such models may not adequately address the complex supportive care needs of people living with and beyond cancer. There is an unprecedented opportunity to learn from the experiences of healthcare delivery from the perspectives of people affected by cancer during the COVID-19 pandemic. This knowledge has the potential to inform the design and adaptation of systems of care in the longer-term which can facilitate access to and quality of care beyond the pandemic. AD, ME and MD report no conflict of interest. The authors alone are responsible for the content and writing of this paper. The datasets generated during and/or analyzed during the current study are not publicly available due to data protection and privacy concerns. 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The authors would also like to acknowledge the support of the European Oncology Nursing Society (EONS) and the EONS Research Working Group members for initial feedback on the study design.