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AIMS AND OBJECTIVES: To explore experiences of daily living and identify rehabilitation needs in patients and caregivers living with myeloproliferative neoplasms. BACKGROUND: Myeloproliferative neoplasms are chronic haematological cancers. Studies report a high symptom burden but little is known about supportive care and rehabilitation for this patient group. DESIGN: Qualitative study with a phenomenological approach using focus group interviews to gather knowledge about the participants' lived experiences. METHODS: Forty-eight patients and seven caregivers attending a 5-day rehabilitation course were interviewed in 12 focus groups. Systematic Text Condensation was used to analyse the interviews. Reporting adhered to COREQ. RESULTS: Two main themes for patients were found: The loss of choice and identity due to the need to prioritise energy and The schism of being a person but also a patient. Patients described how living with myeloproliferative neoplasms meant having to prioritise energy and, therefore, losing freedom to choose activities. This changed their identity and impaired their quality of life. Patients of working age seemed to struggle the most in balancing the disease, family, social relationships and work. One main theme was found for caregivers: Influence of the disease. Caregivers reported how the disease limited their social lives, that the disease brought psychological strain, extra work, and that communication between couples was impaired. When both patients and caregivers participated in rehabilitation courses, they reported better understanding between couples and more open conversations. Rehabilitation needs identified were mainly in relation to psychosocial support and patient education, although needs varied across patients and caregivers. CONCLUSIONS: Patients and caregivers expressed difficulties in adjusting to the lives the disease enforced upon them. Our findings indicate that myeloproliferative neoplasms patients and their caregivers would benefit from a combined model of psychosocial support, patient education, peer support and rehabilitation interventions based on an individual needs assessment. RELEVANCE TO CLINICAL PRACTICE: Nurses can be responsible for individual needs assessments and refer patients and caregivers to suitable supportive care and rehabilitation interventions. TRIAL REGISTRATION DETAILS: The study was approved by the Danish Data Protection agency (J.nr. 2008-58-0035).
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Cuidadores , Neoplasias , Cuidadores/psicologia , Comunicação , Humanos , Pesquisa Qualitativa , Qualidade de Vida/psicologiaRESUMO
AIM: We aim to investigate burnout and resilience among hospital based nurse managers post COVID-19 in order to suggest appropriate person-centred leadership support. BACKGROUND: Nurse leaders are central to establishing safe and caring environments for patients and staff. Therefore, their own wellbeing is crucial, particular in times of crisis where they must provide support and guidance. METHODS: Cross-sectional questionnaire included ward managers. Data collected were burnout inventory, brief resilience score and demographic data. To analyse data, we used descriptive statistics. RESULTS: 51.2% answered the questionnaire. Of those, 32.3% displayed symptoms of high personal burnout and 29% of work-related burnout. 6.5% showed signs of high employee-related burnout. As a group, ward managers showed moderate to high resilience. CONCLUSION: Personal and work-related burnout was highly prevalent among ward managers. Results suggest that the cause of their burnout symptoms cannot be attributed to low individual resilience. We thus suggest a shift in focus from strengthening individual leadership resilience to the establishment of healthful and resilient cultures in accordance with person-centred leadership. IMPLICATIONS FOR NURSING MANAGEMENT: Person-centred leadership has the potential to shift the focus from the resilience of individual leaders to that of collective responsibility for creating a healthful and resilient culture.
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Esgotamento Profissional , COVID-19 , Enfermeiros Administradores , Humanos , Estudos Transversais , COVID-19/epidemiologia , Esgotamento Profissional/etiologia , Liderança , Inquéritos e Questionários , HospitaisRESUMO
OBJECTIVES: In the current study, we aimed to explore the experiences and attitudes among healthcare professionals as they transitioned from their familiar disciplines to respiratory medicine, intensive care or other departments during the first wave of the COVID-19 pandemic. BACKGROUND: In preparation for the increasing number of patients suspected of having or who would be severely ill from COVID-19, a major reconstruction of the Danish Healthcare System was initiated. The capacity of the healthcare system to respond to the unprecedented situation was dependent on healthcare professionals' willingness and ability to engage in these new circumstances. For some, this may have resulted in uncertainty, anxiety and fear. DESIGN: The study was a descriptive study using semi-structured focus group interviews. Healthcare professionals (n = 62) from seven departments were included, and 11 focus group interviews were conducted. The focus group interviews took place during June 2020. Analyses was conducted using thematic analysis. The current study was reported using the consolidated criteria for reporting Qualitative research (COREQ). RESULTS: Healthcare professionals experiences was described by five themes: 1) Voluntary involvement, 2) Changes within the organisation, 3) Risks, 4) Professional identity and 5) Personal investment. Common to all five themes was the feeling of being on a pendulum from a meaningful experience to an experience of mental overload, when situations and decisions no longer seemed to be worthwhile. CONCLUSIONS: Healthcare professionals experienced a pendulum between a meaningful experience and one of mental overload during the COVID-19 pandemic. The swinging was conditioned by the prevailing context and was unavoidable. RELEVANCE TO CLINICAL PRACTICE: To balance the continuous pendulum swing, leaders must consider involvement, and to be supportive and appreciative in their leader style. This is consistent with a person-centred leadership that facilitates a well-adjusted work-life balance and may help prevent mental overload developing into burnout.
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COVID-19 , Pandemias , Atenção à Saúde , Dinamarca , Humanos , Pesquisa Qualitativa , SARS-CoV-2RESUMO
AIM: To describe whether an action learning-inspired journal club for nurse leaders can develop the leaders' self-perceived competences to support a research culture in clinical nursing practice. BACKGROUND: Development of clinical research capacity and nurse leaders with the requisite competences are key factors in evidence-based health care practice. This study describes how nurse leaders at a large regional hospital took part in a journal club for nurse leaders, with a view to developing their competences to support a nursing research culture in their departments. METHODS: A pilot study using a multimethod approach to evaluate the journal club for nurse leaders. Four nurse leaders participated in the journal club for nurse leaders. Content analysis on the data was performed. RESULTS: Data revealed that participation in journal club for nurse leaders gave the leaders a feeling of increased competences to support nursing research culture in their departments. They stated that the action learning approach and the competences of the facilitator were key factors in this outcome. CONCLUSIONS: An action learning-inspired journal club for nurse leaders can be useful and meaningful to nurse leaders in developing leadership competences. IMPLICATIONS FOR NURSING MANAGEMENT: As an approach in journal club for nurse leaders, action learning can develop nurse leaders' competence to support a research culture, and thus ensure evidence-based nursing is practised.
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Enfermeiras e Enfermeiros/psicologia , Pesquisa em Enfermagem , Publicações Periódicas como Assunto/estatística & dados numéricos , Grupos de Autoajuda/tendências , Dinamarca , Enfermagem Baseada em Evidências/métodos , Humanos , Pesquisa em Enfermagem/organização & administração , Pesquisa em Enfermagem/tendências , Projetos Piloto , Recursos HumanosRESUMO
PURPOSE: An Internet-based tool for reporting and analysing patient-reported outcomes (PROs) has been developed. The tool enables merging PROs with blood test results and allows for computation of treatment responses. Data may be visualized by graphical analysis and may be exported for downstream statistical processing. The aim of this study was to investigate, whether patients with myeloproliferative neoplasms (MPNs) were willing and able to use the tool and fill out questionnaires regularly. METHODS: Participants were recruited from the outpatient clinic at the Department of Haematology, Roskilde University Hospital, Denmark. Validated questionnaires that were used were European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire-Core 30, Myeloproliferative Neoplasm Symptom Assessment Form, Brief Fatigue Inventory and Short Form 36 Health Survey. Questionnaires were filled out ≥ 6 months online or on paper according to participant preference. Regularity of questionnaire submission was investigated, and participant acceptance was evaluated by focus-group interviews. RESULTS: Of 135 invited patients, 118 (87 %) accepted participation. One hundred and seven participants (91 %) preferred to use the Internet-based tool. Of the 118 enrolled participants, 104 (88 %) submitted PROs regularly ≥ 6 months. The focus-group interviews revealed that the Internet-based tool was well accepted. CONCLUSION: The Internet-based approach and regular collection of PROs are well accepted with a high participation rate, persistency and adherence in a population of MPN patients. The plasticity of the platform allows for adaptation to patients with other medical conditions.
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Internet , Transtornos Mieloproliferativos/psicologia , Avaliação de Resultados da Assistência ao Paciente , Adulto , Dinamarca , Estudos de Viabilidade , Feminino , Grupos Focais , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias/terapia , Qualidade de Vida , Inquéritos e QuestionáriosRESUMO
AIM: To create awareness among nurse leaders, of what they may need to consider, when integrating nurse researchers as advanced nurse practitioners (ANP) at PhD-level among their staff. BACKGROUND: In a time of transition nurse leaders may be challenged by the change towards evidence-based clinical nursing, including integrating nurse researchers in ANP positions. METHODS: A collective case study including three ANPs took place at a large regional hospital in Denmark. The cases were first analysed by focusing on the generic features, functions and skills of ANPs, and second by focusing on the approaches to evidence-based practice seen in the cases. RESULTS: Regardless of same position, formal level of research expertise and overall responsibility, different approaches related to each ANPs professional profile, interest, academic ambitions and personality were seen. CONCLUSION: Nurse leaders must ensure a process where the content and expectations of the particular role are mutually clarified and adjusted to the individual ANP and to the specific context, in order to create a harmonious match. IMPLICATIONS FOR NURSING MANAGEMENT: In order to clarify expectations regarding the inclusion of nurse researchers as ANPs at PhD level, the paper provides firm recommendations that may guide the process.
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Procedimentos Clínicos/estatística & dados numéricos , Enfermagem Baseada em Evidências/métodos , Profissionais de Enfermagem/estatística & dados numéricos , Pesquisadores/estatística & dados numéricos , Competência Clínica/normas , Dinamarca , Humanos , Profissionais de Enfermagem/provisão & distribuição , Papel do Profissional de Enfermagem , Recursos HumanosRESUMO
PURPOSE: In order to provide guidance and prepare ward managers for future crisis situations similar to the COVID-19 pandemic, the aim of this study was to reflect and learn how person-centred nursing leadership may be strengthened in such situations. BACKGROUND: The pandemic has forced nurse leaders to face new challenges. Knowledge about their experiences may contribute to advancing leadership practices in times of future crises. METHODS: A qualitative directed content analysis was chosen. The theoretical perspective was person-centred leadership. Thirteen ward managers from a Danish university hospital were included and interviewed using telephone interviews three months after the first national COVID-19 case was confirmed. FINDINGS: The main findings of the study revealed that the ward managers often experienced a lack of timely, relevant information, involvement in decision-making and acknowledgement from the head nurse of department and the executive management. This was caused by the existing organizational cultures and the traditional hierarchy of communication. This meant that the ward managers' sense of own competences and leadership values and beliefs came under high pressure when they had to balance different stakeholders' needs. CONCLUSION: When the experience of ward managers results in them being unable to lead authentically and competently in a crisis like the COVID-19 pandemic, lack of engagement can occur, with serious consequences for patients, staff and the ward managers themselves. Traditional organizational cultures that are hierarchical and controlling needs to be challenged and reoriented towards collaborative, inclusive and participative practices of engagement and involvement. Leadership development must be an established and integrated component of organizations, so that ward managers are able to sustain person-centred ways of being and doing in times of crisis.
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PURPOSE: To identify the differences in experiences during wave I and II of the COVID-19 pandemic among healthcare leaders. BACKGROUND: It is expected, that working conditions for COVID-19-pandemic frontline staff will change, as health care organizations have gained experience with handling the consequences of the disease. METHODS: An online survey was sent out to Danish health care leaders during the first and the second pandemic wave. Comparative analyses were performed in relation to three key characteristics: management level, management education and experiences as a leader. RESULTS: Eighty-nine health care leaders completed both surveys. Significant differences were found within the entire group across the key characteristics as they felt more prepared for each stage of the situation, they had more influence on the decisions taken, and they felt more concerned about the quality of treatment and care and their own health. Further significant results related to the three key characteristics were found at 1) Management level: The heads of department experienced being better informed, having more overview of their tasks and that these were meaningful. The ward managers experienced being more able to work in consistency with own beliefs and values, though they felt more overloaded. 2) Level of management education: Leaders, without a formal management education, experienced being more supported by staff. 3) Years of experiences as leader: Leaders with more than five years of experience, experienced being more prepared and informed, had more influence on decision-making, and were more worried about their own health. CONCLUSION: The learning from experience that happens naturally in crisis situations is the reason why the leaders feel more prepared. However, there is a need for further leadership and practice development, to create contexts where leaders feel more ready for all aspects of their role.
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BACKGROUND: Application of patient-reported outcome measures (PROM) seems to be a step toward person-centered care and identifying patients' unmet needs. OBJECTIVE: To investigate the experiences of nurses when PROMs were introduced in a hematological clinical practice as part of a multimethod intervention study. METHODS: The qualitative framework was guided by the interpretive description (ID) methodology, including a focused ethnographic approach with participant observations and interviews. The instruments introduced were the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core 30 and the Outcomes and Experiences Questionnaire. Analysis was inspired by Habermas' critical theory. RESULTS: The analysis revealed 2 predominant themes of nurses' experiences: "PROMs are only used when there is time-which there rarely is" and "PROMs cannot be used without a strategy, just because they are present." CONCLUSIONS: Nurses' experiences with PROMs depended on the systems' rationale, resulting in limited capacity to use and explore PROMs. Nurses believed that PROMs might have the potential to support clinical practice, as PROMs added new information about patients' conditions but also identified needs within supportive care, leaving the potential of PROMs uncertain. Simply introducing PROMs to practice does not necessarily actuate their potential because use of PROMs is dependent on institutional conditions and mandatory tasks are prioritized. IMPLICATIONS FOR PRACTICE: This study contributes knowledge of nurses' experiences when introducing PROMs in a hematological outpatient clinical practice. Findings can guide future PROMs research within the field of nursing.
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Enfermeiras e Enfermeiros/estatística & dados numéricos , Medidas de Resultados Relatados pelo Paciente , Instituições de Assistência Ambulatorial/organização & administração , Atitude do Pessoal de Saúde , Feminino , Doenças Hematológicas/terapia , Humanos , Enfermeiras e Enfermeiros/psicologia , Pesquisa Qualitativa , Qualidade de Vida , Inquéritos e QuestionáriosRESUMO
PURPOSE: The aim was to identify the differences in experiences of Danish healthcare leaders in the beginnning of the coronavirus (COVID-19) pandemic and to generate knowledge for future leadership during and post crises. BACKGROUND: The global spread of COVID-19 has affected healthcare systems worldwide and has forced healthcare leaders to face challenges few were prepared for. It is expected that the pandemic may hit in several waves within the next year and therefore healthcare leaders must be prepared for these waves. METHODS: An online survey was developed, and comparative analyses were performed. RESULTS: One hundred and sixty hospital leaders were invited, and 72% completed the questionnaire. Significant differences were found within three selected characteristics: 1) Management level: significantly more heads of departments experienced taking complex decisions (P=0.05), being able to work in a way consistent with their beliefs and values (P=0.05), and they were less likely to experience that collaboration with other leaders was adversely affected by the COVID-19 situation compared to ward managers (P=0.04). On the other hand, ward managers were significantly more often worried about both their own health (P=0.01) and their family's health (P=0.04). 2) Management education: those with a formal management education more often experienced having the managerial competences to effectively manage the COVID-19 situation (P=0.00), and performing meaningful tasks during the situation (P=0.04). 3) Years of experience: significantly more leaders with more than five years of experience identified having the managerial competences to effectively manage the situation (P=0.01). CONCLUSION: Leadership support during a healthcare crisis like the COVID-19 pandemic should strategically focus on ward managers, leaders with no formal management education and leaders with less than two years of experience. Hospital leaders may use this knowledge to re-contextualize what is already known about targeted leadership support during healthcare crises and to act accordingly.
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BACKGROUND: PROMs can help healthcare professionals gain an improved understanding of patients' physical burdens, functional levels, and (health-related) quality of life throughout disease and medical treatment. The aim of this study was to investigate the barriers and potential opportunities PROMs may present in a haematological outpatient clinic from three different perspectives: patients, nurses and haematologists. METHODS: The present study synthesizes three previously published studies that separately explored the experiences of patients, nurses and haematologists when implementing PROMs. The studies were all guided by the qualitative methodology Interpretive Description, including a focused ethnographic approach, to develop implications for future practice. RESULTS: The overall themes that emerged from the analysis were "Structural similarities influence the adoption of PROMs" and "Different perspectives on the potential of PROMs." CONCLUSION: Across the different user groups in the haematological outpatient clinic, the use of PROMs was thwarted due to an unquestioned commitment to biomedical knowledge and the system's rationality and norms: PROM data was not used in patient consultations. Nurses and haematologists expressed different preferences related to potential future PROMs and different objectives for PROMs in clinical practice. From the different perspectives of the patients, nurses and haematologists, PROMs were not compatible with clinical practice. Further research is recommended to develop PROMs validated for use in haematological outpatient clinics. Moreover, implementation strategies adjusted to the structural barriers of the system are crucial.
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BACKGROUND: Patient-reported outcome measures (PROMs) in clinical practice have the potential to contribute to and support shared decision-making processes by giving voice to patient concerns during consultations. However, the perspectives of patients diagnosed with chronic hematologic cancer on the use of PROMs are unknown. OBJECTIVE: To describe how patients diagnosed with hematologic cancer experience participating in a randomized PROM intervention study, including initial invitation, completion of questionnaires, and outpatient clinic visits. METHODS: A qualitative conceptual framework guided the study, using Interpretive Description with a focused ethnographic approach to explore patient experiences with PROMs in applied practice. Analysis was inspired by Habermas' social theory of communicative action. RESULTS: The analysis revealed 3 predominant themes of patient experiences: that PROMs were "In the service of a good cause," "The questions are not really spot on," and "PROMs are sometimes used for something," that is, unknown to the patient. CONCLUSIONS: The patients' experiences were dominated by the perspective of the healthcare system and by gratitude and imbalanced power relations. During completion of questionnaires, patients struggled to identify with items, and the questionnaires were associated with low content validity. When visiting the outpatient clinic, patients reported that doctors and nurses rarely discussed patients' PROMs. IMPLICATIONS FOR PRACTICE: This study contributes knowledge of patient experiences of the integration of PROMs in hematologic outpatient clinical practice. Findings can guide further research and improve future implementation of PROMs.
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Instituições de Assistência Ambulatorial/estatística & dados numéricos , Assistência Ambulatorial/estatística & dados numéricos , Doença Crônica/psicologia , Doença Crônica/terapia , Neoplasias Hematológicas/psicologia , Neoplasias Hematológicas/terapia , Satisfação do Paciente/estatística & dados numéricos , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Medidas de Resultados Relatados pelo Paciente , Pesquisa Qualitativa , Inquéritos e QuestionáriosRESUMO
BACKGROUND: The patient-doctor relationship is crucial to provide person-centred care, allowing the alleviation of symptom burden caused by disease or treatment. Implementing Patient Reported Outcome Measures (PROMs) is suggested to inform the decision-making process and lead to initiation of care. Yet there are knowledge gaps regarding how meaningful it is to incorporate PROMs in clinical settings. The aim of this study was to investigate haematologists' experiences when PROMs were implemented in an outpatient setting. METHODS: Fourteen participant observations, 13 individual interviews and three in-depth interviews were conducted with haematologists, guided by the qualitative methodology Interpretive Description. Analysis was inspired by Habermas' critical theoretical framework. RESULTS: The haematologists included were characterised by dichotomous experiences with PROMs, either resistant to or supporting their implementation. None were observed to elaborate on PROMs during consultations: instead, primary attention was spent discussing the hematological agenda dictated by the system. CONCLUSION: The use of PROMs for individualized care was linked with extensive uncertainties and PROMs were not requested by the haematologists. To improve individualized care, other approaches may be more suitable. If PROMs are to be incorporated into future clinical practice, they should be tested tothe specific patient group and involve relevant users.
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BACKGROUND: Continuity is crucial when caring for older chronically ill patients. Research has shown that the integration of patients' own perspectives on their situation is of utmost importance for continuity and quality of care. Studies have, however, demonstrated a number of problems with health professionals' communication concerning older patients, leading to lack of continuity and integration of the patient perspective in care and treatment. In spite of these problems being well investigated, they continue to prevail. OBJECTIVES: To examine conditions for continuity and integration of the patient perspective in older, chronically ill patients' care as reflected in nursing staff's communication about the patients. DESIGN: Explorative Participatory Action Research (PAR). SETTING: An acute, general medical ward at a Danish university hospital. PARTICIPANTS: Hospital and municipality nurses (n = 29). Nursing records (n = 12). METHOD: Field studies: observations, interviews, nursing records audits and logs. Data were subject to manifest and latent content analysis. RESULTS: Participants were aware of the importance of ensuring continuity, a comprehensive approach and integration of the patient perspective in care trajectories of older, chronically ill patients. Although they adhered to these ideals, they rarely pursued them in practice. Hindering factors were: organisational values, episodic focus on patients and lack of time. They felt caught in a value conflict between nursing professional values and system values, which caused a feeling of powerlessness, maintaining status quo in their clinical practice. CONCLUSION: The prevailing episodic focus and the competing rationales on the ward constituted a barrier to continuity and integration of the patient perspective in a comprehensive way.