Nurses on shacking ground-A qualitative study of Danish dermatology and allergology nurses' experiences of relocation during the COVID-19 pandemic.

AIM: To investigate dermatology and allergology nurses' experiences of relocation from an outpatient clinic to a newly established COVID-19 infectious disease ward. DESIGN: A phenomenological-hermeneutical approach was applied. METHODS: Three focus groups with nurses were conducted from June to August 2020. Data were analysed in accordance with Ricoeur's theory of interpretation. RESULTS: The relocation represented a challenging period that involved uncertainty and evoked feelings of excitement and dedication towards the nursing profession. Nurses felt obligated to help; however, they also experienced that they did not have a say in the relocation. The placement on the infectious disease ward was characterized by adaptations in three areas: unfamiliar working environment, unfamiliar team competencies and inadequate nursing training. E-learning training was experienced as insufficient, as it did not enhance the nurses' specific competencies or confidence in caring for patients with COVID-19. CONCLUSION: The relocation of nurses from an outpatient clinic to a new COVID-19 infectious disease ward created a dilemma between nurses' sense of duty and their right to self-determination. A prompt relocation into a newly established unfamiliar field caused frustrations because there were no unspoken rules to rely on. Managers should take nurses' experiences and perceptions under careful consideration and strive for more involvement in future scenarios. PATIENT OR PUBLIC CONTRIBUTIONS: No patient or public contribution.

Epistemological aspects of participatory design studies conducted in the field of health science.

AIM(S): To discuss the methodological aspects of participatory design, arguing for a three-phase approach and the suitability of situating participatory design within a phenomenological-hermeneutical tradition in health science. DESIGN AND METHODS: Methodological discussion based on participatory design theory, epistemology and research studies. RESULTS: The epistemological and methodological discussions show how the core values and key elements of participatory design align with the phenomenological-hermeneutical approach. In addition, examples of participatory design studies are provided to illustrate how it can be conducted in health science. CONCLUSION: Participatory design is a flexible framework based on genuine participation, defined by three core values: having a say, mutual learning and democratization. The iterative processes allow for adjustments in alignment with the core values and the scientific stance that defines the choice of methods, tools and techniques. A phenomenological-hermeneutic approach in participatory design studies is relevant and aligned with the core values of participatory design. Thus, this paper argues for a close integration between the participatory design methodology and the phenomenological-hermeneutic scientific approach within health science. IMPLICATIONS FOR THE PROFESSION: Participatory design is a powerful methodology with core values that can co-design sustainable health technologies with potential to impact patient care and the clinical practice of nurses. When combined with qualitative research methods, patients' lived experiences serve as the foundation for improving clinical nursing practice. Discussing the epistemological aspects of participatory design provides nurse researchers with a coherent methodological understanding, essential for the continual development of nursing research. IMPACT: This paper discusses the research methodology of participatory design within health sciences. It aims to address the lack of understanding of the methodology, particularly within a specific scientific stance. The main finding is the elaboration on participatory design and the relevance of a phenomenological-hermeneutical approach. The paper has the potential to impact researchers, master's and PhD students, as well as others engaged in participatory design or other methodologies related to user involvement within health science. REPORTING METHOD: No available EQUATOR guidelines were applicable to this methodological paper, as no new data were created or analysed. PATIENT OR PUBLIC CONTRIBUTION: There was no direct patient or public contribution, as this is a methodological paper.

Qualitative investigation of disease course, characteristics and lived experience of generalized pustular psoriasis.

BACKGROUND: Generalized pustular psoriasis (GPP) is a relapsing-remitting chronic disease characterized by painful pustules with systemic symptoms that negatively impacts quality of life. The psychosocial and economic burden of this rare condition is not well characterized. OBJECTIVES: To qualitatively characterize the cumulative burden of generalized pustular psoriasis on patients' quality of life and psychosocial wellbeing. METHODS: A retrospective chart review of patients with generalized pustular psoriasis was performed to collect demographic information, followed by prospective semi-structured clinical interviews. Interview transcripts were analyzed using thematic analysis. RESULTS: Three major themes were revealed: (1) Burden of having a chronic disease with an unpredictable course, (2) an inability to fulfill societal roles results in a loss of identity, and (3) a physician-patient relationship grounded in trust and transparency can be invaluable in helping patients endure chronic disease. CONCLUSION: GPP has a negative impact on patients' quality of life and psychosocial wellbeing. Impairments in daily function and mental health primarily affects patients during flares and influences behavior during periods of quiescence. A strong patient-physician relationship may help mitigate the impact of GPP.

A life-changing process when living with chronic kidney disease: A qualitative study.

BACKGROUND: Patients with chronic kidney disease and their family members experience a number of lifestyle changes caused by the illness. The value of advance care planning includes understanding health status and options for future care, communication between close family members, and identification of wishes and preferences for care and treatment in relation to family and everyday life. OBJECTIVE: Explore how patients with chronic kidney disease and their families experience everyday life and how they experience having to make choices about treatment. DESIGN: An explorative study using a qualitative method with a phenomenological-hermeneutic approach. PARTICIPANTS: Twelve patients with chronic kidney disease without kidney replacement therapy who were considering their treatment options and eight family members. APPROACH: Individual semistructured interviews with a narrative approach were conducted between August 2021 and March 2022. The data were analysed using Ricoeur's interpretation theory on three levels: naïve reading, structural analysis and critical interpretation and discussion. FINDINGS: One main theme was generated: Family dynamics in a life-changing process. From this, three subthemes were derived: Living in an ordinary life placed in a waiting position, The dilemma of readiness to share and Feelings of being left alone. CONCLUSION: There are changes in family roles and in identity and a desire to maintain the known and ordinary life. Living with chronic kidney disease as a part of daily life is managed differently in the family, which can lead to feelings such as sadness, frustration and loss of shared life and resilience.

Advance care planning to patients with chronic kidney disease and their families: An intervention development study.

AIM: To develop an advance care planning intervention based on the needs of patients with chronic kidney disease, families and healthcare professionals. BACKGROUND: Patients with chronic kidney disease and their families request early advance care planning that continues throughout their illness trajectory. Healthcare professionals experience barriers to initiating advance care planning. Involvement of stakeholders in development of health interventions is important, to identify priorities, understand the problem and find solutions. METHOD: The development was inspired by the Medical Research Council's framework, and codesign was applied. One future workshop and one design workshop were conducted with the consumers. The process was iterative, and data were analysed using the action research spiral. The Guidance for reporting intervention development studies in healthcare (GUIDED) was used. RESULTS: Five areas were considered significant to an advance care planning intervention; a biopsychosocial approach, early palliative care, a family-focused approach, early and continuous advance care planning and a consumer-centred approach. Based on these, a conversation process with healthcare professionals was designed to give patients and families the opportunity to share values, preferences and wishes for treatment and their family and everyday life. CONCLUSION: Codesign facilitated a collaborative process that allowed the consumers to have a significant impact on the design of an advance care planning intervention. A conversation process concerning everyday life, illness and treatment was designed for patients and families. The intervention included an advance care planning tool to guide the healthcare professionals. PRACTICE IMPLICATIONS: The intervention has the intention to improve the communication between healthcare professionals, patients and families. The study provides important knowledge about the significance of giving the patients and their families support in sharing their values, preferences and wishes for treatment and everyday life, thus, to improve care and treatment in their illness trajectory. IMPACT: What problem did the study address Patients with chronic kidney disease and their families strongly request early initiation of advance care planning that continues throughout the illness trajectory. Healthcare professionals experience barriers to the initiation of the advance care planning and request a more systematic approach. What were the main findings Development of a conversation process about everyday life, illness and treatment for patients diagnosed with chronic kidney disease and families, including an advance care planning tool to guide the healthcare professionals. Where and on whom will the research have an impact The study contributes an advance care planning intervention to patients in the early stages of chronic kidney disease and their families. We believe that the intervention could be included during consultations with healthcare professionals in other stages of chronic kidney disease as well as other chronic disease. REPORTING METHOD: To strengthen the reporting of the development of the advance care planning intervention, we used the Guidance for reporting intervention development studies in healthcare (GUIDED). PATIENT OR PUBLIC CONTRIBUTION: The development of the intervention in this study was a collaborative process between patients, families, healthcare professionals and representatives from the Danish Kidney Association, the department's user council and the research team.

Experiences Regarding Use and Implementation of Artificial Intelligence-Supported Follow-Up of Atypical Moles at a Dermatological Outpatient Clinic: Qualitative Study.

BACKGROUND: Artificial intelligence (AI) is increasingly used in numerous medical fields. In dermatology, AI can be used in the form of computer-assisted diagnosis (CAD) systems when assessing and diagnosing skin lesions suspicious of melanoma, a potentially lethal skin cancer with rising incidence all over the world. In particular, CAD may be a valuable tool in the follow-up of patients with high risk of developing melanoma, such as patients with multiple atypical moles. One such CAD system, ATBM Master (FotoFinder), can execute total body dermoscopy (TBD). This process comprises automatically photographing a patient´s entire body and then neatly displaying moles on a computer screen, grouped according to their clinical relevance. Proprietary FotoFinder algorithms underlie this organized presentation of moles. In addition, ATBM Master's optional convoluted neural network (CNN)-based Moleanalyzer Pro software can be used to further assess moles and estimate their probability of malignancy. OBJECTIVE: Few qualitative studies have been conducted on the implementation of AI-supported procedures in dermatology. Therefore, the purpose of this study was to investigate how health care providers experience the use and implementation of a CAD system like ATBM Master, in particular its TBD module. In this way, the study aimed to elucidate potential barriers to the application of such new technology. METHODS: We conducted a thematic analysis based on 2 focus group interviews with 14 doctors and nurses regularly working in an outpatient pigmented lesions clinic. RESULTS: Surprisingly, the study revealed that only 3 participants had actual experience using the TBD module. Even so, all participants were able to provide many notions and anticipations about its use, resulting in 3 major themes emerging from the interviews. First, several organizational matters were revealed to be a barrier to consistent use of the ATBM Master's TBD module, namely lack of guidance, time pressure, and insufficient training. Second, the study found that the perceived benefits of TBD were the ability to objectively detect and monitor subtle lesion changes and unbiasedness of the procedure. Imprecise identification of moles, inability to photograph certain areas, and substandard technical aspects were the perceived weaknesses. Lastly, the study found that clinicians were open to use AI-powered technology and that the TBD module was considered a supplementary tool to aid the medical staff, rather than a replacement of the clinician. CONCLUSIONS: Demonstrated by how few of the participants had actual experience with the TBD module, this study showed that implementation of new technology does not occur automatically. It highlights the importance of having a strategy for implementation to ensure the optimized application of CAD tools. The study identified areas that could be improved when implementing AI-powered technology, as well as providing insight on how medical staff anticipated and experienced the use of a CAD device in dermatology.

Advance care planning in chronic kidney disease: A national Danish survey of knowledge and attitudes among clinicians.

INTRODUCTION: Patients with chronic kidney disease and their families strongly request advance care planning. They want it to start early-before treatment decisions are made-and to be an ongoing process during their illness trajectory. Previous international studies show that health care professionals find there to be significant barriers that impact the extent of involvement in advance care planning. AIM: To identify Danish nephrology health care professionals' knowledge and attitudes to advance care planning and the status of current advance care planning practice in Denmark. METHOD: An anonymous, cross-sectional survey was administrated online. The questionnaire was developed in Australia and translated and culturally adapted into Danish. Health care professionals were recruited via email lists. In descriptive statistics and multiple ordinal regression, the influence of the respondents' attributes on the extent of involvement in advance care planning was explored, along with the involvement of family, and skills, comfort, barriers and facilitators in relation to advance care planning. RESULTS: The 207 respondents comprised nephrologists (23%), other physicians (8%), nurses (62%) and other HCPs (7%), of whom 27% had participated in advance care planning training. In total, 66% indicated that they lacked access to material about advance care planning for patients with chronic kidney disease and 46% indicated that the conversations were performed ad hoc. A total of 47% reported that advance care planning was performed well at their workplace. Reported barriers were time, lack of experience and procedure. Training in advance care planning could facilitate the involvement. Nurses were less likely to feel skilled and comfortable in engaging advance care planning, while those with more than 10 years of experience were more likely to feel skilled and comfortable. CONCLUSION: Training in advance care planning with patients with chronic kidney disease and their families on both a theoretical and clinical level is important to ensure comfort among health care professionals and to facilitate the extent of involvement. A systematic chronic kidney disease-specific approach is significant, in order to guide the conversations and ensure that advance care planning is conducted to a set standard.

Care and treatment needs of immunosuppressive therapy patients with warts and impact on everyday life: a qualitative study.

INTRODUCTION: Patients receiving immunosuppressive therapy have an increased risk of developing verrucae vulgaris (warts). They often suffer from dissemination of numerous warts, complicated by low treatment response and long-term treatment. How patients experience these challenges is not well characterized. The aim of this study was to explore how patients on immunosuppressive therapy experience everyday life with warts on the hands and feet, and their needs related to care and treatment. METHODS: The study took a phenomenological-hermeneutic approach. Semi-structured interviews were conducted with 10 adults. Data were analyzed using the thematic analysis described by Braun and Clark. RESULTS: Warts on the hands and feet impact everyday life and cause feelings of stigma and pain. Patients request treatment and hope to be cured although the prospects are poor. Self-treatment is experienced as a burden, because of the need for more specific information about and skills to treat the warts, and because individual patients' resources are not considered. Patients experience a lack of care continuity. CONCLUSIONS: Patients request a person-centred care and treatment approach, to establish a relationship with health care professionals. Establishing care continuity might reduce patients' treatment-related insecurity.

The impact of adolescents' everyday life experiences on their primary hyperhidrosis treatment - a qualitative study.

INTRODUCTION: Hyperhidrosis is a disease affecting around 5% of the western population. The qualitative field within hyperhidrosis among adolescents has been sparsely investigated. The aim of this study was to investigate the impact of adolescent hyperhidrosis patients' everyday life experiences on their hyperhidrosis treatment. METHODS: Qualitative, semi-structured interviews were carried out. In total, 10 adolescents, aged 12-18 years, participated in the study. Data were analyzed using a set of inseparable activities as described by Van Manen. RESULTS: Three main themes were identified to represent common shared experiences across participants. The first theme was related to the impact of hyperhidrosis on the physical and psychological dimensions of life as it negatively affected both physical abilities and one's self-concept. Having hyperhidrosis was experienced as living a life in secrecy, characterized by individual routines for concealment and isolation in order to protect social identity. CONCLUSION: The large negative impact of hyperhidrosis on adolescents is a strong justification for treatment of the disease. The substantial emotional distress suggests that treatment may need to include psychological support.

Entrepreneurship and nurse entrepreneurs lead the way to the development of nurses' role and professional identity in clinical practice: A qualitative study.

AIMS AND OBJECTIVES: To explore the experiences and perspectives of nurses' transition into entrepreneurship in a clinical and cultural nursing setting and the impact of entrepreneurship on the nurses' role and professional identity. BACKGROUND: Entrepreneurship is a relatively unknown phenomenon in international nursing research, and the prevalence of entrepreneurial nurses is only 0.5-1% of all working nurses globally. Unfortunately, several barriers occur within the healthcare system and existing nursing culture that may affect the potential of bringing entrepreneurship into the nursing profession. DESIGN: The qualitative study used a phenomenological-hermeneutical approach based on an interpretative phenomenological analysis and COREQ-guided reporting. METHODS: Nine individual, semi-structured interviews were conducted face to face (n = 6) and by telephone (n = 3) with Danish nurse entrepreneurs between February and March 2019. RESULTS: The analysis revealed four themes: (a) prejudice towards entrepreneurship; (b) to become an entrepreneur in a nursing culture; (c) rebellion against the traditional role as employee and (d) challenged professional identity and new professional roles. CONCLUSION: Nurse entrepreneurs are caught between traditional and new ways of viewing nursing identity, norms, values and roles, and they face a conflict of professional values and a stereotyped view of 'real' nursing. Our findings show that entrepreneurship entails a huge learning process that develops nurses' ability to think outside the box in a broader health perspective and challenge the existing nursing culture and role. However, nurse entrepreneurs' ability to engage in entrepreneurship is compromised by professional values, the duty to behave as a good nurse and their own prejudices towards entrepreneurs. IMPACT: Entrepreneurship and nurse entrepreneurs pose a huge potential development of the nursing role and identity, as they challenge the current view on the nursing profession. This development is important for patients and health professionals, as future health challenges call for new ways of thinking and acting.

Improving management of psoriasis patients receiving biological treatment: A qualitative approach.

AIM: To investigate psoriasis patients' and healthcare professionals' experiences and perspectives of follow-up consultations. DESIGN: A qualitative study with a phenomenological-hermeneutic approach. METHOD: Participant observations of consultations and semi-structured interviews were conducted with patients receiving biological treatment, together with two focus groups with healthcare professionals, from June 2018-January 2019. Data were analysed using a qualitative structured approach based on Paul Ricoeur's philosophy of interpretation. RESULTS: Consultations had a strong biomedical and corrective approach focusing on lifestyle behaviour change, measurements and permanent routines. Healthcare professionals felt the need for enhanced competencies providing lifestyle behaviour change support and the possibility of providing patients more specific strategies. They were faced with a dilemma between lacking the right skills and having a professional duty. The frequent follow-up visits did not fit in with the patients' everyday lives.

An mHealth App to Support Patients With Psoriasis in Relation to Follow-up Consultations: Qualitative Study.

BACKGROUND: Teledermatology has the potential to help deliver health care by transforming the relationship between patients and health care professionals (HCPs), shifting the power of consultation so that patients can become more informed, assertive, and involved in their care. Mobile health (mHealth) is a promising and reliable tool for the long-term management of patients with psoriasis on systemic treatment. In an attempt to facilitate a more patient-centered approach in clinical practice, we designed and developed an mHealth solution to support patients with self-management and empowerment. OBJECTIVE: The aim of this study is to explore the experiences and perceptions of patients and health care professionals of using an mHealth solution that was developed using a participatory design approach. METHODS: This was an exploratory qualitative study. Data were collected through semistructured interviews with patients and focus group interviews with HCPs. RESULTS: All participants found it easy to use the mHealth solution, and the patients found it convenient. Patients' reflexivity was improved because they could prepare ahead of consultations. Video consultations provided patients with a degree of freedom in their everyday lives, with not having to attend in-person visits. Among the HCPs, there were concerns regarding their medical responsibilities, as they could not assess the patients' skin as they used to. The mHealth solution required new workflows and procedures that were not part of the existing consultation routines. CONCLUSIONS: The mHealth solution can strengthen the relationship between HCPs and patients and facilitate patients to become more active in their care. Alignment and structure in relation to the selection of eligible patient candidates for being offered the mHealth solution could reduce social health inequalities. In addition, video consultations changed HCPs' work practice, necessitating new types of skills to communicate with patients.

Development of an mHealth App for Patients With Psoriasis Undergoing Biological Treatment: Participatory Design Study.

BACKGROUND: In Denmark, patients with psoriasis undergoing biological treatment have regular follow-ups, typically every 3 months. This may pose a challenge for patients who live far away from the hospital. Mobile health (mHealth) is a promising and reliable tool for the long-term management of patients with psoriasis undergoing biological treatment because the disease course can be properly monitored. Despite recent developments in mHealth, the full potential of teledermatology remains to be tapped by newer, more attractive forms of services focused on patients' needs. OBJECTIVE: This study aims to design and develop an mHealth app to support the self-management of patients with psoriasis using a participatory design. METHODS: Using participatory design, we conducted 1 future workshop, 4 mock-up workshops, and 1 prototype test with patients and health care professionals to co-design a prototype. The process was iterative to ensure that all stakeholders would provide input into the design and outcome; this approach enabled continuous revision of the prototype until an acceptable solution was agreed upon. Data were analyzed according to the steps-plan, act, observe, and reflect-in the methodology of participatory design. RESULTS: Health care professionals and patients emphasized the importance of a more patient-centered approach, focusing on the communication and maintenance of relationships. Patients perceived consultations to be impersonal and repetitive and wanted the opportunity to contribute to the agenda while attending a consultation. Patients also stated they would prefer not to attend visits in person every 3 months. On the basis of these findings, we designed an mHealth app that could replace in-person visits and support patients at in-person visits. Video consultations, self-monitoring, and registration of patient-reported outcome data were embedded in the app. CONCLUSIONS: Using participatory design facilitated mutual learning and democratic processes that gave end users a significant influence over the solution. Despite the advantages of using participatory design in developing mHealth solutions, organizational conditions may still represent a barrier to the optimization of solutions.