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The Centre for Psychosocial Research in Cancer conducts world-leading research and service evaluations to support well-being and quality of life amongst those affected by cancer. This paper reflects on how we adapted our research management and study methods during the COVID-19 pandemic, and the implications for ongoing research practice. We use four case studies to consider the benefits and challenges of adapting to remote approaches to research and evaluation delivery: maintaining high ethical standards and data security in evaluation projects with remote approvals; recruiting for and running online discussion groups to inform intervention development; designing and delivering an in-person intervention via video conferencing; and adapting a longitudinal qualitative study to focus on newly emerging issues. We reflect on how we can maintain quality and rigour when conducting remote research and evaluation, and how this can affect our experience as researchers. We also consider possible implications of the uncertainty created by the COVID-19 pandemic for the funding and design of future research and evaluations.

Objectives: The overarching aim of this study is to explore, examine and identify the experience that young women with congenital heart disease face as they transition through adolescence into womanhood. Design: This is an empirical qualitative study conducted in the form of three focus groups. The study design and analysis adopted a feminist ontological positioning to elucidate the voice of women and offer an alternative perspective of cardiology health care. Data were analysed using the inductive thematic approach informed by the study aims. Participants: A group of seven female participants (mean age 26) based in the United Kingdom, each with varying degrees of congenital heart defects that required open heart surgery growing up, was included in the study. Results: Three key themes with antecedent concepts emerged: (a) the impact of womanhood and the potential influence of motherhood on the young women themselves transitioning through adolescence with CHD within medical and sociocultural contexts, (b) the challenges of being a woman and undergoing heart surgery during adolescence on the young women's health before, during and after surgery and (c) the effect of existing online/offline healthcare and social structures on women's health during transitioning through adolescence These themes were encompassed under an overarching theme of psychological complexities developed throughout the cardiac journey from diagnosis through to post‐surgery. Conclusion: This study built on the limited exploration of being a young woman and having CHD and confirmed that there are vulnerabilities and challenges in having CHD as a young woman transitioning through adolescence. This was a result of sex (biological characteristics) and gender factors (socially constructed roles). This leads to short‐ and long‐term implications on psychological well‐being. This research indicates that enhancements are needed in the provision of care and psychological support for young women with CHD. This will help to enable women to achieve a good quality of life in addition to increased life expectancy offered by medical advancements. Patient or Public Contribution: Active participant involvement was crucial to ensure the authentic female voice in the study. This study received support from young women with congenital heart disease. Young women contributed to the study design, recruitment of participants and analysis of results. Two of the women were also co‐authors of this paper. [ABSTRACT FROM AUTHOR]

Objective: The empty pelvis syndrome (EPS) is common after pelvic exenteration (PE), causing fluid collections, bowel obstruction, perineal sinuses, and fistulas. The best approach to fill the pelvis to mitigate this remains controversial, and the impact of EPS on health‐related quality of life (HrQoL) is unknown. This study is the first to begin to explore lived‐experiences of EPS complications. Methods: Unstructured EPS virtual focus group meetings were conducted with a convenience sample of patients who underwent PE, as an extension of a modified‐Delphi study. Interpretative phenomenological analysis was conducted on verbatim transcripts to generate group experiential themes. Results: Twelve patients (eight UK, one Dutch, and three Belgian) participated in four focus groups. Eight EPS complications were reported, (two pelvic collections, five chronic perineal sinuses, and one bowel obstruction). Group experiential themes were 'Out of Options', depicting patients forced to accept complications or limited survival; 'The New Normal', with EPS potentially delaying adaptation to post‐PE HrQoL; 'Information Influencing Adaptation,' emphasising the significance of patients understanding EPS to cope with its effects; and 'Symptoms,' reporting manifestations of EPS, the resultant physical limitations, and an intangible feeling that patients lost part of themselves. Conclusions: EPS may influence patient decision‐making, regret, adaptation, and information‐seeking. It can cause a variety of unpleasant symptoms and physical limitations, which may include phantom phenomenon. This work supports ongoing purposeful HrQoL research to better define these themes. [ABSTRACT FROM AUTHOR]

Objective: The COVID‐19 pandemic has had a complex and profound impact on the provision of palliative care globally. To support learning from palliative care providers and researchers worldwide, the Education Subcommittee of International Psycho‐Oncology Society (IPOS) Palliative Care Special Interest Group developed a webinar with presentations by and discussion with eight international palliative care leaders. Methods: Presentations were content rich; the speakers used both quantitative (e.g., sharing recent statistical findings) and qualitative (e.g., narrative storytelling, anecdotal experiences) approaches to portray the effect of COVID‐19 in their region. Subsequent to the webinar, the committee collectively identified five themes conveyed by the presenters through consensus. Results: The themes included: (1) altered accessibility to palliative care, with socio‐economic status impacting virtual health availability; (2) reduced opportunities to preserve dignity, as survival has been prioritized over preserving the humanity of patients and their loved ones; (3) complicated grief and bereavement arising from social distancing requirements; (4) greater awareness of the importance of sustaining health provider well‐being; and (5) the development of valuable innovations across nations, institutions, disciplines, and communities. Conclusions: Overall, the webinar facilitated valuable connection for global learning and identified opportunities for research and clinical interventions. In an ongoing crisis that has exacerbated isolation, we will need to continue to learn and lean on one another as a global community to navigate ongoing challenges of the COVID‐19 pandemic. [ABSTRACT FROM AUTHOR]