Managing, making sense of and finding meaning in advanced illness: a qualitative exploration of the coping and wellbeing experiences of patients with lung cancer

Coping plays an essential role in maintaining the wellbeing of patients with cancer. A number of different coping responses and strategies have been identified in the literature. The value and relevance of meaning based coping theory has also been emphasised, including Antonovosky’s (1979) Sense of Coherence (SoC) theory. Ten patients with advanced lung cancer were interviewed up to three times. A total of twenty in depth interviews were carried out, fully transcribed and data were analysed following a methodology of Interpretative Phenomenological Analysis. Three broad domains were identified to categorise the core life concerns of participants; making sense of and managing one’s illness; maintaining daily life and relationships and confronting the future. Within these domains multiple coping themes are identified, which to varying degrees help to maintain patient wellbeing and quality of life. This paper considers the relevance of SoC theory for understanding the coping experiences of patients with advanced cancer, and identifies resources and factors likely to support patient coping, with implications for health and social care services

Symptom management, nutrition and hydration at end-of-life: a qualitative exploration of patients', carers' and health professionals' experiences and further research questions

Background Symptom management is an essential aspect of palliative and end-of-life care, but evidence suggests that patients’ symptoms may not always be relieved, causing significant harm to patients and magnifying their relatives’ distress. A growing body of evidence focuses on symptom management at the end-of-life, but research funding for palliative care remains disproportionately low. It is therefore crucial that research funding is targeted at areas of importance to patients and relatives. The Palliative and end-of-life care Priority Setting Partnership (PeolcPSP) undertook a UK-wide free-text survey to establish research priorities within palliative and end-of-life care and disseminated its results in 2015. Much of the data were related more broadly to personal perceptions and experiences rather than specific research questions. The aim of this article is to report on a supplementary analysis exploring the experiences and questions of PeolcPSP survey respondents regarding symptoms, hydration and nutrition. Methods The PeolcPSP data (n=1403) were coded by a team of qualitative researchers in a supplementary analysis. There were 190 responses that related to symptoms, nutrition and hydration. The data were analysed thematically using Braun and Clarke’s approach. Results Five themes were identified: pain, breathlessness, agitation, nutrition and hydration. The majority of responses related to symptoms that were sub-optimally managed, in particular pain. Nutrition and hydration were of significant concern, particularly for carers. Overall, respondents consistently asked about the most effective, evidence-based methods for managing symptoms and suggested areas where further research is necessary. Conclusions This study highlights the perceptions and experiences of patients, families and professionals within palliative care, highlighting the need for improved care, communication and further research to establish which treatments are most effective within a palliative care population. This is essential to reduce harm and distress for patients and families

'I didn't really understand it, I just thought it'd help': exploring the motivations, understandings and experiences of patients with advanced lung cancer participating in a non-placebo clinical IMP trial

BACKGROUND: Few studies have explored in depth the experiences of patients with advanced cancer who are participating in clinical investigational medicinal product trials. However, integrated qualitative studies in such trials are needed to enable a broader evaluation of patient experiences in the trial, with important ethical and practical implications for the design and conduct of similar trials and treatment regimes in the future. METHODS: Ten participants were recruited from the control and intervention arms of FRAGMATIC: a non-placebo trial for patients with advanced lung cancer. Participants were interviewed at up to three time points during their time in the trial. Interviews were analysed using Interpretive Phenomenological Analysis. RESULTS: Patients were motivated to join the trial out of hope of medical benefit and altruism. Understanding of randomisation was mixed and in some cases poor, as was appreciation of trial purpose and equipoise. The trial was acceptable to and evaluated positively by most participants; participants receiving the intervention focused on the potential treatment benefits they hoped they would receive, whilst participants in the control arm found alternative reasons, such as altruism, personal fulfilment and positive attention, to commit to and perceive benefits from the trial. However, whilst experiences were generally very positive, poor understanding, limited engagement with trial information and focus on treatment benefits amongst some participants give cause for concern. CONCLUSIONS: By exploring longitudinally the psychological, emotional and cognitive domains of trial participation, we consider potential harms and benefits of participation in non-placebo trials amongst patients with advanced lung cancer and identify several implications for future research with and care for patients with advanced cancer. TRIAL REGISTRATION: ISRCTN80812769. Registered on 8 July 2005

Cryptococcosis: a proteomic investigation of an emerging fungal disease

Fungal infections are increasing in frequency throughout the world. The development of new diagnostic and treatment strategies has not kept pace with this increase. The result is a high incidence of infection recurrence and high mortality rates. The pathogenic yeasts Cryptococcus neoformans and Cryptococcus gattii provide an excellent system for determining the spectrum of fungal growth and infection, from environmental saprotrophic growth, to self-limiting infection and through to severe primary infection. Cryptococcus cells obtained from pulmonary infection, and infected rat lung tissue, represented technically challenging sample types that required significant protocol development prior to comparative analysis. This subjected the obtained data to a number of experimental caveats. Despite the significant impediments to experimentation, the advances made in protocol development by this study allowed for the first in vivo analysis of intracellular Cryptococcus protein expression. This result provided proof of concept for global "–omics" analysis of Cryptococcus from an in vivo sample. In addition, qualitative data were obtained that offered insights into fungal pathogenesis at the protein level and highlighted a number of Cryptococcus proteins that could be exploited as drug targets. Furthermore, the identification of host lung proteins and systemic cytokines of biological relevance to pulmonary cryptococcosis provides proof of the ability of comparative proteomics to elucidate future drug targets, biomarkers and diagnostic markers from in vivo mammalian infection models. The studies’ most significant achievement has been the advances made in protocol development. It is hoped that these advances will lead to further, potentially quantitative, analysis of fungal pathogens under in vivo conditions, along with continued development of novel therapeutic and diagnostic options for pathogenic fungi

The genome sequence of a hoverfly, <i>Epistrophe eligans</i> (Harris, 1780)

We present a genome assembly from an individual female Epistrophe eligans (the Spring Epistrophe; Arthropoda; Insecta; Diptera; Syrphidae). The genome sequence is 405.9 megabases in span. Most of the assembly is scaffolded into 5 chromosomal pseudomolecules, including the X sex chromosome. The mitochondrial genome has also been assembled and is 16.93 kilobases in length

Freinet Pedagogy: Enduring Impact Over an Individual Career

This article presents an individual perspective on the impact of Freinet Pedagogy across the career of one English language teacher and teacher educator. With special attention to language instruction, I will highlight a number perennially important Freinet dimensions that gradually came to my attention over the years. My admiration for Freinet Pedagogy first arose in relation to two very hands-on techniques: free writing and classroom printing. Later, my interest took a more theoretical turn, through recognition of illuminating consistencies between Freinet Pedagogy and two other more recent developments: broadly, van Lier’s (2004) influential ecological perspective on language learning may be taken as a backdrop against which to highlight the coherence of Freinet Pedagogy both with the flexibly system-based style of planning now advocated by such authorities as Reason (2008), and with the present-day connectionist psychological approach to opportunities for language teaching and learning that has been metaphorically represented in back-to-the-well terms (Sivell &amp; Sivell, 2012)

Genetic screening for gynecological cancer: where are we heading?

The landscape of cancer genetics in gynecological oncology is rapidly changing. The traditional family history-based approach has limitations and misses >50% mutation carriers. This is now being replaced by population-based approaches. The need for changing the clinical paradigm from family history-based to population-based BRCA1/BRCA2 testing in Ashkenazi Jews is supported by data that demonstrate population-based BRCA1/BRCA2 testing does not cause psychological harm and is cost effective. This article covers various genetic testing strategies for gynecological cancers, including population-based approaches, panel and direct-to-consumer testing as well as the need for innovative approaches to genetic counseling. Advances in genetic testing technology and computational analytics have facilitated an integrated systems medicine approach, providing increasing potential for population-based genetic testing, risk stratification, and cancer prevention. Genomic information along-with biological/computational tools will be used to deliver predictive, preventive, personalized and participatory (P4) and precision medicine in the future

Palliative care research centre's move into social media: constructing a framework for ethical research, a consensus paper

Background Social media (SM) have altered the way we live and, for many, the way we die. The information available on even the rarest conditions is vast. Free from restrictions of mobility, time and distance, SM provides a space for people to share experiences of illness, death and dying, and potentially benefit from the emotional and practical support of others n similar positions. The communications that take place in these spaces also create large amounts of ‘data’ which, for any research centre, cannot be ignored. However, for a palliative care research centre the use of this ‘data’ comes with specific ethical dilemmas. Methods This paper details the process that we, as a research, went through in constructing a set of ethical guidelines by which to work. This involved conducting two consensus days; one with researchers from within the centre, and one with the inclusion of external researchers with a specific interest in SM. Results The primary themes that emerged from the consensus meetings includes; SM as a public or private space; the status of open and closed groups; the use of historical data; recruiting participants and obtaining informed consent and problems of anonymity associated with dissemination. Conclusions These are the themes that this paper will focus on prior to setting out the guidelines that we subsequently constructed

The genome sequence of a hoverfly, <i>Merodon equestris</i> (Fabricius, 1794)

We present a genome assembly from an individual female Merodon equestris (hoverfly; Arthropoda; Insecta; Diptera; Syrphidae). The genome sequence is 873.0 megabases in span. Most of the assembly is scaffolded into 6 chromosomal pseudomolecules. The mitochondrial genome has also been assembled and is 15.95 kilobases in length