Dr Anne Arber

Background Rare diseases where prognosis is poor provide limited scope for patient and public involvement (PPI). One such disease is mesothelioma, a cancer of the lung pleura or of the peritoneum caused by exposure to asbestos, where PPI is poorly documented. We undertook to explore how PPI could be facilitated in mesothelioma research. Methods An online survey with mesothelioma researchers (n = 23) assessed the perceived benefits and challenges of PPI in mesothelioma. Six online workshops and thirteen in-depth interviews with patients and the public explored their views on how PPI could be increased in mesothelioma and their motivations to become PPI representatives in the future. The survey data were analysed using descriptive statistics and the interviews, using Thematic Analysis. Results In the survey, 26% (n = 6) of the researchers did not include PPI in their research, while 74% (n = 17) did, finding it most beneficial at the stages of applying for funding and dissemination. The main perceived benefits of PPI were clarifying the research question and outcome measures, making research more credible and relevant to patients’ needs, and increasing its impact. The main perceived challenges to PPI were the general poor prognosis in mesothelioma, and funding timescales which hindered timely recruitment of PPI representatives. The analysis of the interviews with the patients and public revealed three main themes: “Motivations to become a PPI representative in the future”, “Understanding the nature of PPI during the project”, and “Perceived challenges to PPI in mesothelioma”. Altruism and the need for hope were the main reasons to wish to become involved in PPI in the future. For many participants, the project proved to be a journey of understanding the nature of PPI, a concept that was not easy to grasp from the start. The participants perceived certain barriers to PPI such as high symptom burden in mesothelioma, the abstract concept of PPI, and the use of scientific language. Conclusions The present research provides a detailed picture of the benefits and challenges of PPI in mesothelioma. We recommend long-term engagement with mesothelioma support groups so that researchers achieve meaningful and sustainable PPI in mesothelioma research.

Most nurses in China have not been trained to take care of end-of-life patients appropriately due to lack of educational resources and insufficient training. A palliative care program was launched by the Jiangsu Nursing Association (JNA training program) and to identify gaps in palliative care training. The main aim of this study was to evaluate the training effects of the JNA training program on nurses' knowledge and attitudes to palliative care. A cross-sectional study was conducted with 10 048 registered nurses in all regions of Jiangsu. All participants completed an online questionnaire using the Chinese version of The Palliative Care Quiz for Nursing (PCQN-C) and the Frommelt Attitude Toward Care of the Dying scale (FATCOD-B-C). A propensity score matched analysis was performed between the nurses who had attended the JNA training program and whose who hadn't. The average score of PCQN-C among all nurses was 8.79, while the mean score of the FATCOD-B-C was 103.62. Those participants who attended the JNA training program had significantly better scores than those who did not. Propensity score matching analysis showed that the palliative care training program failed to improve nurses' knowledge in psychosocial and spiritual care or their attitudes towards the necessity of family support although there was positive impact on other aspects of palliative care. Knowledge of palliative care among Chinese nurses remains low. Training programs may improve general knowledge and attitudes to palliative care. However, important aspects of knowledge such as communication skills, family support, and psychosocial aspects of care, are missing. These gaps should be filled in future palliative care training programs targeting nurses with oriental culture background.

This study aimed to investigate the mental health status of nurses from low‐risk areas of novel coronavirus (COVID‐19) pandemic, its potential impact factors, and the main stressors under the normalized prevention and control in China. A mobile phone app‐based survey was conducted among registered nurses in Jiangsu province via a region‐stratified sampling method. The questionnaire consisted of items on the demographic characteristics of the nursing staff and their Depression, Anxiety, Stress Scale‐21 (DASS‐21) along with questions for self‐assessment of stressors that are associated with COVID‐19. STROBE guideline was used. Among 1803 nurses who were working in the low‐risk areas in Jiangsu, 22.0%, 29.8%, and 16.1% of them reported moderate to extreme levels of depression, anxiety, and stress, respectively. Having 11–15 years of working experience and being a fixed‐term contract nurse were associated with experiencing worse mental health outcomes while supporting‐Wuhan working experience and having mental health preparation course training were independent factors that had beneficial impact on their psychological well‐being afterward. In terms of source of pressure, a key finding of this study is that the main stressor among these nurses was the lack of patient’s understanding and cooperation (71.2%) which calls for better psychosocial communication between nurses and patients. The present findings would provide information for other regions at low risk of COVID‐19 and may aid the provision of support and interventions for the benefit of the psychological well‐being of nurses who are exposed to life‐threatening occupational risks and are more vulnerable to the pandemic than others.

Objective To assess perspectives and experiences of healthcare professionals and other relevant stakeholders regarding psychosocial support and palliative care in mesothelioma patients and their relatives, to identify gaps and to explore potential improvements in current healthcare. Methods Individual, semi-structured interviews were conducted with healthcare professionals and other relevant stakeholders. Interviews were transcribed verbatim and analysed thematically using ATLAS.ti. Results In total, 16 respondents participated in an interview (69% women; mean age: 51.8 years (SD 12.41; range 28-75)). Four key themes were identified: (1) availability of tailored psychosocial and palliative care, (2) timely integration and organisation of psychosocial support and palliative care, (3) differences in provided support and care between healthcare professionals and hospitals and (4) training of healthcare professionals and stakeholders on psychosocial problems. Conclusion Our study showed that psychosocial support and palliative care for patients with mesothelioma could be improved. A more fluent transition between primary and secondary cancer care and early integration of psychosocial support and palliative care is advised. Lastly, more attention is needed for psychosocial and palliative care in the basic medical training of healthcare professionals.

Objective Mesothelioma is a rare cancer with a poor prognosis caused by exposure to asbestos. Psychosocial support and care for mesothelioma patients and their carers is limited and not tailored to their specific needs. The aim of this study was to explore patients' and carers' needs and experiences regarding psychosocial support and their coping mechanisms dealing with psychosocial problems. Methods A qualitative study was performed using semi-structured interviews with both mesothelioma patients and their carers. Participants were recruited through two specialised hospitals and two patient organisations. All interviews were transcribed verbatim and thematically analysed. Results Ten patients (70% male, mean age 67.7) and five carers (20% male, mean age 65) participated in the study. The main themes identified for patients were active coping, limited needs and limited knowledge and awareness about psychosocial support. The main themes for carers were passive coping and 'it's all about the patient'. Conclusion Mesothelioma patients do not seem to have high needs for psychosocial support, whereas carers do. However, knowledge about and awareness of psychosocial support is low among mesothelioma patients. The findings from this study should be used to adjust guidelines for psychosocial support in mesothelioma patients and their carers.

Although disgust is recognized as a common and prominent emotion in healthcare, little is known about how healthcare professionals understand, experience and conceptualize disgust. The aim of the study was to gain an in-depth understanding of how nursing and midwifery students experience, understand and cope with disgust in their clinical work. Interviews were transcribed verbatim and analysed using interpretative phenomenological analysis (IPA). Six participants (all women: two nursing students, four midwifery students) from a university in the South of England were interviewed. Four superordinate themes with eight subthemes were identified. Overall, findings suggest that participants experience both moral and physical disgust; however, they find it difficult to talk about and use other terms to describe their experience. Findings are discussed through the lens of social identity theory, to understand the relevance of professional identity and how this might further maintain the disgust taboo. The strategies participants have developed in order to cope with disgust are explored and understood within the current healthcare climate. Future research should focus on ways of addressing the experience of disgust by healthcare professionals in order to improve the quality of care provided, especially in the climate of the COVID-19 crisis.