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.

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.

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.

Caring for young people with moderate to severe psoriasis: an interpretive description of parental perspectives.

Introduction: Psoriasis often sets on during childhood or adolescence, when parents have great importance for the young people's self-management, well-being, and quality of life. The aim of this study was to understand parents' perspectives on young people's daily life with psoriasis in order to improve adolescents' self-management.Method: Adopting interpretive, description methodology (ID), focus group discussion, and interviews were conducted with eight parents of adolescents with psoriasis. The analysis was inductive with an iterative comparative approach. Main themes conveying participants' perceptions were identified for constructing a coherent narrative of parents' perspectives on their young people's transition with psoriasis through adolescence.Results: Parents initially perceived psoriasis mainly a physical and treatment-related burden and not until late realized its socio-emotional impact. They eventually found themselves balancing between declining treatment due to fear of side effects and acknowledging the impact on their young people's quality of life and their desire for effective treatment.Conclusions: Caring for young people with psoriasis is a stressful process involving experimental learning to understand and manage the complexity of psoriasis and its impact on adolescents' emotional and social life. Future research should consider integration of shared decision-making and self-management support interventions in routine daily care as focus points.

Experience of Being Young With Psoriasis: Self-Management Support Needs.

Psoriasis is a long-term condition with a possibly cumulative life course impairment. Young people struggle to minimize its effects on appearance and functioning. To date, the self-management needs of adolescents suffering from psoriasis have been underinvestigated. Using focus groups and individual interviews, we present an interpretive description of young people's experiences of living with psoriasis, the challenges they face, and the support they need to relieve suffering and come to terms with their condition. This process is characterized by loneliness, the self-imposition of limitations, and the lack of personalized knowledge and communication skills to manage the impact of disease and society's reactions. Our study provides insight into needs of early interventions tailored to address condition, role, and emotional management, involving parent education, peer support, storytelling, and roles for professionals. We argue that further research should involve young people, their parents, and professionals in the development and evaluation of interventions.

Self-management in daily life with psoriasis: an integrative review of patient needs for structured education.

The aim of this integrative review is to identify and discuss patient needs for education to support self-management in daily life with psoriasis. As psoriasis increasingly gains recognition as a serious chronic autoimmune skin disease with long-term impairment on the life course, and not mainly a cosmetic problem, nurses are highly challenged to develop efficient education to support patient self-management. The paper includes five stages: (1) problem identification, (2) literature search, (3) data evaluation, (4) data analysis and synthesis, and (5) presentation, based on theoretic scaffolding around the concept "need." Nineteen of 164 original papers within nursing, medicine and psychology, and reflecting patient perspective were included. To capture the patients' cultural understanding of the implications of the disease and care, we developed an interlevel model indicating that self-experienced burden of disease and its visibility, personal conditions such as illness perception, and the patient's age at onset time are high-impact factors that should be addressed in future structured patient education programmes. The research on patient needs has hitherto focused on adults, but the problems and vulnerability associated with having a chronic and visible disease during adolescence must be acknowledged, and patient education initiatives designed for this young group are recommended.