Children's and adolescents' perspectives on living with advanced cancer: A meta-synthesis of qualitative research.

PURPOSE: The quality of life (QOL) experiences of children and adolescents living with advanced cancer have been under-explored. Enhancing QOL for this population is a dominant goal of their healthcare yet, there has been little research identifying aspects that impact their QOL. The purpose of this meta-synthesis was to identify themes of QOL informed from the voices of children and adolescents living with advanced cancer. METHODS: This meta-synthesis utilized meta-ethnography to synthesize data from individual studies in order to develop new conceptual understanding of what is important to children and adolescents about their lives when living with advanced cancer. RESULTS: Our analysis identified themes of QOL relevant to children and adolescents with advanced cancer: (1) feeling supported and wanting to support others; (2) re-establishing normal; (3) suffering and emotional distress; (4) new perspectives; (5) maintaining autonomy; and (6) awareness of time. These themes differed from more traditional dimensions of QOL often applied to children and adolescents with cancer. CONCLUSION: This research is novel as its developed themes originated from the direct voices and expressed perspectives of children and adolescents living with advanced cancer. This is a significant initial step toward both understanding QOL in this specific context and the measurement of QOL for this population.

How children and adolescents understand the quality of their lives while living with advanced cancer that is difficult to cure is largely unknown and has not been extensively studied. A significant number of children and adolescents will live with advanced cancer however, it is not well-understood how children and adolescents define their quality of life (QOL) and which aspects of their lives feel meaningful to them while living with advanced cancer. This is important as their understanding and perspectives of their QOL might be very different from what their parents and healthcare professionals caring for them might identify as meaningful to their QOL. This research used the voices of children and adolescents with advanced cancer that were included in diverse research studies examining children and adolescents' experiences living with advanced cancer to develop themes of QOL for this group of young people. It was important to focus on their voices as we wanted to know directly from children and adolescents living with advanced cancer what feels meaningful and relevant to their lives. Our research identified aspects of QOL important to children and adolescents with advanced cancer that are different from how QOL is traditionally understood for children and adolescents with cancer. These findings can contribute to enhancing the healthcare of children and adolescents living with advanced cancer by suggesting that children and adolescents with advanced cancer have distinct QOL experiences and needs.

"A Most Equitable Drug": How the Clinical Studies of Convalescent Plasma as a Treatment for SARS-CoV-2 Might Usefully Inform Post-Pandemic Public Sector Approaches to Drug Development.

Interventional clinical studies of convalescent plasma to treat COVID-19 were predominantly funded and led by public sector actors, including blood services operators. We aimed to analyze the processes of clinical studies of convalescent plasma to understand alternatives to pharmaceutical industry biopharmaceutical research and development, particularly where public sector actors play a dominant role. We conducted a qualitative, critical case study of purposively sampled prominent and impactful clinical studies of convalescent plasma during 2020-2021.

Experience of Care Among Adults With Acute Leukemia Near the End of Life: A Scoping Review.

Background: Acute leukemia is a cancer of the blood and bone marrow with a high symptom burden and a high mortality rate in adults. The quality of end-of-life care among this patient population is deemed to be low based on health care administrative data, though the patient experience is not included in this evaluation. Objective: This scoping review aims at exploring and mapping the current research literature on the experience of care among adults with incurable acute leukemia near the end of life. Design: The JBI framework guided our scoping review, and the protocol was prospectively registered in the Open Science Forum. Results: A total of 5661 unique articles were screened for title and abstract, and 44 were selected for full text. After a manual search, five studies published in seven articles were selected for data extraction, including three qualitative and two quantitative studies. Two studies used family caregivers as patient proxies, two studies engaged patients directly, whereas one study obtained data from patients and family caregivers. Patient care in acute settings was reported in all studies, with most patients dying in acute care settings. Patients and family caregivers often valued an open and honest approach, with sufficient time for dialogue with their providers. Discussions about prognosis, palliative care, and hospice care were often late or incomplete. The medicalization of end-of-life care, including intensive care unit admissions and invasive medical procedures, were viewed as the norm by some providers, though perceived as distressing for both patients and their loved ones. Conclusions: Adults with acute leukemia face significant challenges in accessing high-quality end-of-life care brought about by the complex nature of their disease and its treatment. A systematic exploration of the end-of-life experience among these patients through direct patient engagement or by way of patient reporting proxies is needed.

A critical contribution in a time of crisis: Examining motivations and deterrents to COVID-19 convalescent plasma donation and future donation intentions among prospective Canadian donors.

OBJECTIVES: To understand motivations and deterrents to donate COVID-19 convalescent plasma for a clinical trial and determine whether they predict intention to donate source plasma. BACKGROUND: During the COVID-19 pandemic, Canadian Blood Services was involved in three nationally coordinated convalescent plasma clinical trials, requiring the recruitment of several thousand prospective convalescent plasma donors. Understanding the motivations and deterrents of donors in the unique context of a clinical trial and ongoing pandemic can inform recruitment for source plasma donation beyond a clinical trial. METHODS AND MATERIALS: We invited 2785 Canadians who had registered interest in donating COVID-19 convalescent plasma to participate in an online survey containing a 42-item scale on motivators of and deterrents to donation. Between April 26th and May 19th, 2021, 979 responded (35.1%). We included a final sample of 820 participants with sufficient data across all scales. Exploratory and confirmatory factor analysis determined the factor structure of the scale. Regression analysis assessed the extent to which the factors predicted intention to donate. RESULTS: Four factors were identified: 'helping relationally', 'deterrents to donation', 'social facilitators', and 'access to the donation centre', each with good internal consistency (α = 0.78-95). Higher scores on the helping relationally scale were associated with higher odds of intention to donate, whereas higher scores on the deterrents scale were associated with lower odds of intention to donate. CONCLUSION: Participants were motivated by an interest in helping people who are ill and contributing to research committed to finding treatments in a time of crisis. Outside the crisis context, blood service operators seeking to recruit source plasma donors should emphasise its lifesaving potential and the impact of donation on the community.