A fast transition: A case study of patients' experiences during the diagnostic and surgical treatment phase of an accelerated brain cancer pathway.

BACKGROUND: Patients receiving a brain cancer diagnosis may face cognitive decline and a poor prognosis. In addition, they suffer from a high symptom burden in a complex cancer pathway. The aim of this study was to investigate the early hospital experiences of brain tumour patients during the diagnostic and surgical treatment phase. METHODS: A descriptive longitudinal single-case study design was used, and data were analysed via systematic text condensation. RESULTS: The patients' experiences of being diagnosed with and treated for brain cancer were interpreted in terms of the central theme: a fast transition into an unknown journey. This theme consisted of the following subthemes: emotionally overwhelmed, putting life on hold and an unfamiliar dependency. CONCLUSIONS: Patients diagnosed with brain cancer struggle with overwhelming emotions due to this sudden life-threatening diagnosis, their fear of brain surgery and their progressing dependence. Patients did not voice their feelings, fears or needs, so these may easily be overlooked and unmet. A proactive and continuous care approach throughout the diagnostic phase is needed to support these patients.

Frontline nurses' experiences of managing visitor restrictions during the COVID-19 pandemic in a Danish university hospital - Lessons learned.

BACKGROUND: Worldwide visitor restrictions forced nurses to separate patients from their relatives. However, the experience of implementing shifting restrictions from the frontline nurses' perspectives in a Danish context has yet to be assessed. AIM: The aim of this descriptive qualitative study was to explore frontline nurses' experiences of managing shifting visitor restrictions in a Danish somatic university hospital during the COVID-19 pandemic. METHODS: An online questionnaire, including open-ended questions, was developed. Data were analysed using descriptive statistics and content analysis. FINDINGS: 116 nurses from 29 departments participated; they were informed about restrictions primarily by their charge nurses and hospital intranet. Shifting visitor restrictions compelled the nurses to constantly adjust and negotiate their practices. When deciding to suggest deviating from the restrictions, they shared their decision-making with colleagues. Visitor restrictions left the hospital environment quieter, but they also created a lack of overview and predictability, an emotional burden, and a negative impact on the quality of care. CONCLUSION: Restricting relatives' access challenged the nurses' professional values, and it seems to have affirmed their appreciation of relatives' role as important partners in contemporary hospital-based health care.

Patients' experiences and care needs during the diagnostic phase of an integrated brain cancer pathway: A case study.

AIMS AND OBJECTIVES: To identify and describe patients' experiences and care needs throughout the diagnostic phase of an integrated brain cancer pathway. BACKGROUND: A malignant brain tumour is a devastating diagnosis, which may cause psychical symptoms and cognitive deficits. Studies have shown that the shock of the diagnosis, combined with the multiple symptoms, affects patients' ability to understand information and express needs of care and support. Unmet needs have been reported within this group of patients; however, the experiences and care needs of patients going through the diagnostic phase of a standardised integrated brain cancer pathway have not previously been explored. DESIGN: A case study design was used to provide detailed information of the complex needs of patients being diagnosed with a malignant brain tumour. METHODS: Research interviews and direct participant observation of four patients during hospital admission, brain surgery and discharge were conducted in a Danish university hospital. Systematic text condensation was used to analyse the data material. RESULTS: Four major themes were identified: information needs, balancing hope and reality while trying to perceive the unknown reality of brain cancer, not knowing what to expect and participants' perceptions of the relationship with the healthcare providers. The analysis revealed that participants were in risk of having unmet information needs and that contextual factors seemed to cause fragmented care that led to feelings of uncertainty and loss of control. CONCLUSIONS: Brain tumour patients have complex care needs and experience a particular state of vulnerability during the diagnostic phase. Through personal relationships based on trust with skilled healthcare providers, participants experienced an existential recognition and alleviation of emotional distress. RELEVANCE TO CLINICAL PRACTICE: Patients receiving a brain tumour diagnosis experience unmet care needs in several areas during their hospital stay. There is a need for interventions from healthcare providers.

Involvement of patients in the research process.

Healthcare research emphasises involvement of patients in the research process, recognizing that this can enhance the relevance, quality, and implementation of research. This article highlights the need for more systematic planning to successfully involve patients in research projects and provides guidance on key aspects that researchers should consider in the planning of involving patients in research. The article accentuates the importance of establishing clear frameworks and guidelines to promote transparency and facilitate implementation.

Developing and testing guidance to support researchers engaging patient partners in health-related research.

BACKGROUND: Although interest in Patient and Public Involvement in health-related research is growing, there seems to be a lack of guidance supporting researchers in deciding on methods and levels for Patient and Public Involvement in health-related research throughout the research process. Furthermore, the numerous definitions, methods, and frameworks make it challenging for researchers new to this field to decide on the most appropriate approach for their project. METHODS: This study aimed to develop and test guidance for researchers deciding on approaches, levels, and methods for engaging patient partners in health-related research. A group of 11 researchers in Patient and Public Involvement in health-related research participated in six workshops to develop the guidance. The feasibility and acceptability of the guidance were tested in a survey of 14 researchers using the System Usability Scale plus two elaborative questions. The guidance was also tested by five PhD students engaging patient partners in their projects. RESULTS: The guidance developed consisted of two resources: Resource I outlined five international approaches to Patient and Public Involvement in health-related research, and Resource II described the different levels and methods for engaging patient partners in research. The System Usability Scale score (at the 50th percentile) was 80, indicating excellent usability. Qualitative data showed that the two resources supported reflections regarding different approaches, levels, and methods. CONCLUSION: The researchers found the guidance to be supportive of their reflective thinking about engaging patient partners in their research. The testing provided knowledge about when and how to use the guidance but also raised questions about the usefulness of the guidance in communications with patients.

More and more patients are taking part in research as patient partners. However, researchers have little guidance on how to bring patient partners into research studies and at what levels. There are many ways to do this. It can be hard to choose the way most appropriate for a specific project, especially for newer researchers. We (11 researchers at different career levels) developed guidance through six workshops to help new researchers choosing the way to engage patient partners most appropriate for their project. The guidance resulted in two different resources. Resource I gives five international approaches for bringing patient partners into research. Resource II describes methods for engaging patient partners at different levels. Fourteen researchers and five PhD students tested the guidance and scored how usable it is. It had excellent usability. The two resources did help researchers to decide on the best ways to engage patient partners in research. We now need to test how the guidance can be used to talk to patients about taking part in specific research projects.

Reported challenges in nurse-led randomised controlled trials: an integrative review of the literature.

AIMS: The purpose of this integrative literature review was to explore and discuss the methodological challenges nurse researchers report after conducting nurse-led randomised controlled trials in clinical hospital settings. Our research questions were (i) what are the most commonly experienced methodological barriers and challenges and (ii) which lessons can be learned from these reports? METHOD: A database search of Medline, Cinahl, The Cochrane Library and Embase was carried out. Variants of the following search terms were used: randomised controlled trial, controlled clinical trial, clinical trial, methods, nursing research, nursing, research, challenges, barriers, nurse's role, nurse attitude, attitude of health personnel. FINDINGS: The literature on reported challenges and barriers between 1999 and 2009 showed that the most often experienced problems were (i) sufficient patient recruitment, (ii) nonadherence to research protocols and (iii) economic and organisational obstacles. These three challenges and barriers were inter-related and all were affected by time and timing. CONCLUSION: Randomised controlled trials are complex, expensive, time-consuming and highly demanding for researchers and the clinical nursing staff. Two lessons learned from this integrative review can be highlighted. First, we recommend researchers openly to share their experiences of barriers and challenges. They should describe factors that may have inhibited the desired outcome. Second, efforts to improve the collaboration between nurse researchers and clinicians, including education, training and support may increase the success rate and quality of nurse-led studies using the randomised controlled trial.

How to engage patient partners in health service research: a scoping review protocol.

BACKGROUND: The patients' and the carers' roles in health service research has changed from being solely participants in studies to also being active partners and co-designers in the research process. Research carried out with or by patient partners is an increasingly accepted component of health service research in many countries, but how researchers can best approach engaging patient partners in the research process is still not clear. There is a need for guidance to support researchers when engaging patient partners and assess how such engagement impacts on research outputs. The aim of this paper is to present a protocol for a scoping review of published literature on how to engage patient partners effectively in the research process. Investigating this aim implies examining: a) how to engage patient partners in the research process; and b) what impact such engagement has on research outputs. This scoping review protocol is the first to examine how to engage patient partners effectively across different diseases and research areas. METHODS: A scoping review using a systematic process informed by Arksey and O'Malley's framework will be carried out across six electronic databases using the terms 'patient participation', 'community participation', 'research personnel', 'patient and public involvement' and 'patient partner'. We will include published reviews concerning engagement of patient partners in the research process in healthcare settings, and exclude studies assessing engagement in treatment and healthcare. Two reviewers will screen the titles and abstracts of articles independently for inclusion, and extract data from articles that meet the inclusion criteria. Where there is disagreement, a third reviewer will be consulted to facilitate consensus. The data elicited will include: author and study characteristics; research aims and findings; description of patient engagement in the research process; and assessment impact. Descriptive data and narrative analysis will synthesize findings. DISCUSSION: To understand how to engage patient partners effectively in the research process, the impact of such engagement must be taken into consideration to give a qualified suggestion for future guidance. We hope this review will raise awareness of which common elements constitute effective engagement of patient partners in the research process.