The impact of continuous lenalidomide maintenance treatment on people living with multiple myeloma-a single-centre, qualitative service evaluation study.

PURPOSE: Continuous lenalidomide maintenance treatment after autologous stem cell transplantation delivers improvement in progression free and overall survival among newly diagnosed multiple myeloma patients and has been the standard of care in the UK since March 2021. However, there is scant information about its impact on patients' day-to-day lives. This service evaluation aimed to qualitatively assess patients receiving lenalidomide treatment at a cancer centre in London, in order that the service might better align with needs and expectations of patients. METHODS: We conducted 20 semi-structured interviews among myeloma patients who were on continuous lenalidomide maintenance treatment at a specialist cancer centre in London. Members of the clinical team identified potentially eligible participants to take part, and convenience sampling was used to select 10 male and 10 female patients, median age of 58 (range, 45-71). The median treatment duration was 11 months (range, 1-60 months). Participants were qualitatively interviewed following the same semi-structured interview guide, which was designed to explore patient experience and insights of lenalidomide. Reflexive thematic analysis was used for data analysis. RESULTS: Four overarching themes were as follows: (i) lenalidomide: understanding its role and rationale; (ii) reframing the loss of a treatment-free period to a return to normal life; (iii) the reality of being on lenalidomide: balancing hopes with hurdles; (iv) gratitude and grievances: exploring mixed perceptions of care and communication. Results will be used to enhance clinical services by tailoring communication to better meet patients' preferences when making treatment decisions. CONCLUSION: This study highlights that most patients feel gratitude for being offered continuous lenalidomide and perceive it as alleviating some fears concerning relapse. It reveals variations in side effects in different age groups; younger patients reported no/negligible side effects, whilst several older patients with comorbidities described significant symptom burden, occasionally leading to treatment discontinuation which caused distress at the perceived loss of prolonged remission. Future research should prioritise understanding the unique needs of younger patients living with multiple myeloma.

Frontline Health Care Workers' Mental Health and Well-Being During the First Year of the COVID-19 Pandemic: Analysis of Interviews and Social Media Data.

BACKGROUND: The COVID-19 pandemic has shed light on fractures in health care systems worldwide and continues to have a significant impact, particularly in relation to the health care workforce. Frontline staff have been exposed to unprecedented strain, and delivering care during the pandemic has affected their safety, mental health, and well-being. OBJECTIVE: This study aimed to explore the experiences of health care workers (HCWs) delivering care in the United Kingdom during the COVID-19 pandemic to understand their well-being needs, experiences, and strategies used to maintain well-being (at individual and organizational levels). METHODS: We analyzed 94 telephone interviews with HCWs and 2000 tweets about HCWs' mental health during the first year of the COVID-19 pandemic. RESULTS: The results were grouped under 6 themes: redeployment, clinical work, and sense of duty; well-being support and HCW's coping strategies; negative mental health effects; organizational support; social network and support; and public and government support. CONCLUSIONS: These findings demonstrate the need for open conversations, where staff's well-being needs and the strategies they adopted can be shared and encouraged, rather than implementing top-down psychological interventions alone. At the macro level, the findings also highlighted the impact on HCW's well-being of public and government support as well as the need to ensure protection through personal protective equipment, testing, and vaccines for frontline workers.

The role of partner support for health behaviours in people living with and beyond cancer: A qualitative study.

OBJECTIVE: This study aimed to qualitatively explore how partner support for health behaviours is perceived, received, and utilised in people living with and beyond cancer (LWBC). METHODS: Semi-structured audio interviews were conducted with 24 participants, 15 men and nine women, living with and beyond breast, prostate, and colorectal cancer. Inductive and deductive Thematic Analysis was used to analyse the data. RESULTS: Three key themes with six subthemes were identified relating to partner support for health behaviours: (1) Interdependence (Reciprocity, Overt Control, Influence & Motivation) (2) Concordance (Shared Attitudes & Health Beliefs, Shared Health Behaviour) and (3) Communal Coping (Communal Orientation towards Health and Decision Making, Co-operative Action in Health Behaviour). CONCLUSIONS: Partner support plays a unique and significant role in the health behaviours of people LWBC. Partners play a collaborative role in managing health and facilitating health behaviours, while the high level of concordance in couples may represent a potential barrier to change via the reinforcement of maladaptive health beliefs and behaviours. IMPLICATIONS FOR CANCER SURVIVORS: Overall, findings demonstrate that partners should be considered and included where possible when designing future behaviour change interventions for people LWBC.

Exploring the perceived impact of social support on the health behaviours of people living with and beyond cancer during the COVID-19 pandemic: a qualitative study.

PURPOSE: Social support facilitated healthy behaviours in people living with and beyond cancer (LWBC) before the COVID-19 pandemic. Little is known about how social support impacted their health behaviours during the pandemic when social restrictions were imposed. The aim of this study was to qualitatively explore how social support was perceived to impact the health behaviours of people LWBC during the COVID-19 pandemic. METHODS: Semi-structured interviews were conducted via telephone with 24 adults living with and beyond breast, prostate and colorectal cancer. Inductive and deductive framework analysis was used to analyse the data. RESULTS: Five themes developed. These were (1) Companionship and accountability as motivators for physical activity, (2) Social influences on alcohol consumption, (3) Instrumental support in food practices, (4) Informational support as important for behaviour change and (5) Validation of health behaviours from immediate social networks. CONCLUSION: This study described how companionship, social influence, instrumental support, informational support and validation were perceived to impact the health behaviours of people LWBC during the COVID-19 pandemic. Interventions for people LWBC could recommend co-participation in exercise with friends and family; promote the formation of collaborative implementation intentions with family to reduce alcohol consumption; and encourage supportive communication between partners about health behaviours. These interventions would be useful during pandemics and at other times. Government policies to help support clinically extremely vulnerable groups of people LWBC during pandemics should focus on providing access to healthier foods.

The impact of COVID-19 on autologous stem cell transplantation in multiple myeloma: A single-centre, qualitative evaluation study.

Autologous stem cell transplantation (ASCT) is standard of care in biologically fit, newly diagnosed multiple myeloma (MM) patients, offering better therapeutic outcomes and improved quality of life (QoL). However, with the UK's 1st national lockdown on 23/03/2020, several guidelines recommended deferring ASCT due to risks of infection, with resource limitations forcing some units to suspend ASCT entirely. Such changes to patients' treatment plans inevitably altered their lived experience during these uncertain times with expected impact on QoL. We conducted a qualitative study using semi-structured interviews to gain insight into MM patients' understanding of their disease, initial therapy and ASCT, and their response to therapy changes. A clinical snapshot of how COVID-19 affected the MM ASCT service in a single UK institution is also provided, including changes to chemotherapy treatment plans, timing, and prioritisation of ASCT. Framework analysis identified 6 overarching themes: (1) beliefs about ASCT, (2) perceptions of information provided about MM and ASCT, (3) high levels of fear and anxiety due to COVID-19, (4) feelings about ASCT disruption or delay due to COVID-19, (5) perceptions of care, and (6) importance of social support. Example subthemes were beliefs that ASCT would provide a long-remission/best chance of normality including freedom from chemotherapy and associated side-effects, disappointment, and devastation at COVID-related treatment delays (despite high anxiety about infection) and exceptionally high levels of trust in the transplant team. Such insights will help us adjust our service and counselling approaches to be more in tune with patients' priorities and expectations.

Missing the human connection: A rapid appraisal of healthcare workers' perceptions and experiences of providing palliative care during the COVID-19 pandemic.

BACKGROUND: During infectious epidemics, healthcare workers are required to deliver traditional care while facing new pressures. Time and resource restrictions, a focus on saving lives and new safety measures can lead to traditional aspects of care delivery being neglected. AIM: Identify barriers to delivering end-of-life care, describe attempts to deliver care during the COVID-19 pandemic, and understand the impact this had on staff. DESIGN: A rapid appraisal was conducted incorporating a rapid review of policies from the United Kingdom, semi-structured telephone interviews with healthcare workers, and a review of mass print media news stories and social media posts describing healthcare worker's experiences of delivering care during the pandemic. Data were coded and analysed using framework analysis. SETTING/PARTICIPANTS: From a larger ongoing study, 22 interviews which mentioned death or caring for patients at end-of-life, eight government and National Health Service policies affecting end-of-life care delivery, eight international news media stories and 3440 publicly available social media posts were identified. The social media analysis centred around 274 original tweets with the highest reach, engagement and relevance. Incorporating multiple workstreams provided a broad perspective of end-of-life care during the COVID-19 pandemic in the United Kingdom. RESULTS: Three themes were developed: (1) restrictions to traditional care, (2) striving for new forms of care and (3) establishing identity and resilience. CONCLUSIONS: The COVID-19 pandemic prohibited the delivery of traditional care as practical barriers restricted human connections. Staff prioritised communication and comfort orientated tasks to re-establish compassion at end-of-life and displayed resilience by adjusting their goals.

The impact of the COVID-19 pandemic on mental health and quality of life in people living with and beyond breast, prostate and colorectal cancer - a qualitative study.

BACKGROUND: Individuals living with and beyond cancer are at heightened risk of adverse psychological and social outcomes and experiences. In March 2020, the COVID-19 global pandemic presented a unique set of social circumstances with the potential to exacerbate the challenges faced by this population. The purpose of this study was to investigate the experiences of people living with and beyond cancer during the first year of the COVID-19 pandemic and assess the impact on psychological and social aspects of their lives. METHODS: From a pool of participants from a larger health behaviours study thirty participants were purposively sampled for characteristics including: diagnostic group (breast, prostate and colorectal cancers), gender, time since diagnosis and age. Semi-structured interviews were conducted via telephone to discuss their experience of living through the pandemic. A thematic analysis was conducted using a needs-based approach to detail the fundamental needs expressed by this population in relation to their mental health and quality of life during the pandemic. RESULTS: Three fundamental needs underpinned the experiences expressed by participants: the need to feel safe; particularly in relation to risk of contracting COVID-19 and their ongoing cancer monitoring; the need to feel connected; to the people, places, activities and practices of everyday life; and the need to make the most out of life; specifically in context of having already endured cancer and cancer treatment. Participant experiences are described in relation to how they impacted each of these three needs. CONCLUSIONS: People living with and beyond cancer have past and ongoing experiences that make them vulnerable to adverse psychosocial reactions and outcomes. Support for this population needs to provide greater clarity of risk, clearer guidelines specific to their personal circumstances, and regular updates on scheduling of important follow up care and monitoring.

The feasibility and acceptability of an app-based intervention with brief behavioural support (APPROACH) to promote brisk walking in people diagnosed with breast, prostate and colorectal cancer in the UK.

INTRODUCTION: Increased moderate to vigorous physical activity (MVPA) can improve clinical and psychosocial outcomes for people living with and beyond cancer (LWBC). This study aimed to assess the feasibility and acceptability of trial procedures in a pilot randomised controlled trial (RCT) of a theory-driven app-based intervention with behavioural support focused on promoting brisk walking (a form of MVPA) in people LWBC (APPROACH). METHODS: Participants diagnosed with breast, prostate or colorectal cancer were recruited from a single UK hospital site. Assessments at baseline and 3 months included online questionnaires, device-measured brisk walking (activPAL accelerometer) and self-reported weight and height. Participants were randomised to intervention or control (care as usual). The intervention comprised a non-cancer-specific app to promote brisk walking (National Health Service 'Active 10') augmented with print information about habit formation, a walking planner and two behavioural support telephone calls. Feasibility and acceptability of trial procedures were explored. Initial estimates for physical activity informed a power calculation for a phase III RCT. A preliminary health economics analysis was conducted. RESULTS: Of those medically eligible, 369/577 (64%) were willing to answer further eligibility questions and 90/148 (61%) of those eligible were enrolled. Feasibility outcomes, including retention (97%), assessment completion rates (>86%) and app download rates in the intervention group (96%), suggest that the trial procedures are acceptable and that the intervention is feasible. The phase III RCT will require 472 participants to be randomised. As expected, the preliminary health economic analyses indicate a high level of uncertainty around the cost-effectiveness of the intervention. CONCLUSIONS: This pilot study demonstrates that a large trial of the brisk walking intervention with behavioural support is both feasible and acceptable to people LWBC. The results support progression onto a confirmatory phase III trial to determine the efficacy and cost-effectiveness of the intervention.

Why women are dying from unsafe abortion: narratives of Ghanaian abortion providers.

In Ghana, despite the availability of safe, legally permissible abortion services, high rates of morbidity and mortality from unsafe abortion persist. Through interviews with Ghanaian physicians on the front lines of abortion provision, we begin to describe major barriers to widespread safe abortion. Their stories illustrate the life-threatening impact that stigma, financial restraints, and confusion regarding abortion law have on the women of Ghana who seek abortion. They posit that the vast majority of serious abortion complications arise in the setting of clandestine or self-induced second trimester attempts, suggesting that training greater numbers of physicians to perform second trimester abortion is prerequisite to reducing maternal mortality. They also recognized that an adequate supply of abortion providers alone is a necessary but insufficient step toward reducing death from unsafe abortion. Rather, improved accessibility and cultural acceptability of abortion are integral to the actual utilization of safe services. Their insights suggest that any comprehensive plan aimed at reducing maternal mortality must consider avenues that address the multiple dimensions which influence the practice and utilization of safe abortion, especially in the second trimester.

The impact of the COVID-19 pandemic on the health behaviours of people living with and beyond breast, prostate, and colorectal cancer-a qualitative study.

PURPOSE: Positive health behaviours (sufficient exercise, healthy diet, limiting alcohol, and not smoking) can improve multiple outcomes after a cancer diagnosis. Observational studies suggest that health behaviours were negatively impacted for some but not all individuals living with and beyond cancer. The aim of this study was to qualitatively explore the impact of the pandemic on health behaviours of people in this population. METHODS: Thirty participants were purposively sampled for characteristics including diagnostic group (breast, prostate, and colorectal cancers), gender, time since diagnosis, and age. Semi-structured interviews were conducted to discuss the impact of the pandemic on health behaviours. Thematic analysis and a secondary Ideal Types analysis were conducted. RESULTS: Five themes covered changes in food, weight management, relationship to alcohol, and exercise. Five "types" were identified, representing orientations to health behaviours. The "gift of time" provided by the pandemic had an impact on health behaviours, with trends towards increases in drinking, eating unhealthy food, and exercising less. CONCLUSIONS: The COVID-19 pandemic impacted engagement in positive health behaviours among participants in this study. Strict restrictions and changes in routines resulted in individuals adjusting how they managed their diet, alcohol intake, and exercise behaviours. The typology identified within this study helps to define how different orientation to health behaviours could underpin the responses of individual people LWBC. IMPLICATIONS FOR CANCER SURVIVORS: Alongside providing an understanding of the experiences of people LWBC during the COVID-19 pandemic, the proposed typology suggests how, with further development, future health behaviour interventions in this group could be targeted based on individual orientations to health, rather than demographic or clinical variables.

Healthcare workers' perceptions and attitudes towards the UK's COVID-19 vaccination programme: a rapid qualitative appraisal.

OBJECTIVES: While there is research relating to perceptions of vaccines among healthcare workers (HCWs), the evidence base in relation to COVID-19 remains limited. The aim of this study was to explore HCWs' perceptions and attitudes towards vaccines and the COVID-19 vaccination programme in the UK, including their expectations and views on promoting vaccination to others. DESIGN: This study was designed as a rapid qualitative appraisal, integrating data from a review of UK policies and guidance on COVID-19 vaccination with data from in-depth semistructured telephone interviews with frontline HCWs in the UK. Data were analysed using framework analysis. PARTICIPANTS: Interviews were carried out with a purposive sample of HCWs from two large London-based hospital Trusts (n=24) and 24 government policies, and guidelines on the vaccination programme were reviewed. RESULTS: The level of uncertainty about the long-term safety of vaccines and efficacy against mutant strains made it difficult for HCWs to balance the benefits against the risks of vaccination. HCWs felt that government decisions on vaccine rollout had not been supported by evidence-based science, and this impacted their level of trust and confidence in the programme. The spread of misinformation online also impacted HCWs' attitudes towards vaccination, particularly among junior level and black, Asian and minority ethnic (BAME) HCWs. Most HCWs felt encouraged to promote vaccination to their patients, and the majority said they would advocate vaccination or engage in conversations about vaccination with others when relevant. CONCLUSION: In order to improve HCWs' trust and confidence in the UK's COVID-19 vaccination programme, there needs to be clarity about what is known and not known about the vaccines and transparency around the evidence-base supporting government decisions on vaccine rollout. Effort is also needed to dispel the spread of vaccine-related misinformation online and to address specific concerns, particularly among BAME and junior-level HCWs.