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Objective: The overabundance of health misinformation has undermined people's capacity to make evidence-based, informed choices about their health. Using the Informed Health Choices (IHC) Key Concepts (KCs), we are developing a two-stage education programme, Informed Health Choices-Cancer (IHC-C), to provide those impacted by cancer with the knowledge and skills necessary to think critically about the reliability of health information and claims and make well-informed choices. Stage 1 seeks to prioritise the most relevant Key Concepts. Methods: A project group and a patient and carer participation group completed a two-round prioritisation process. The process involved disseminating pre-reading materials, training sessions, and a structured judgement form to evaluate concepts for inclusion. Data from each round were analysed to reach a consensus on the concepts to include. Results: Fourteen participants were recruited and completed the first-round prioritisation. Fifteen participants undertook the second-round prioritisation. Nine Key Concepts were selected for the programme across five training sessions and two consensus meetings. Conclusion: The prioritised concepts identified represent the most pertinent aspects of cancer-related information for those impacted by the disease. By incorporating these concepts into educational materials and communication strategies, healthcare providers and organisations can potentially help cancer patients, survivors, and their loved ones to recognise and combat cancer-related misinformation more effectively. Innovation: This study introduces a participatory prioritisation process, which integrates the expertise of healthcare professionals with the insights of patients and carers, thereby enhancing the programme's relevance and applicability.
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BACKGROUND: Cancer treatments have many adverse effects on patient's health leading to poor cardiorespiratory capacity, muscular- degeneration, fatigue, loss of strength and physical function, altered body-composition, compromised immune-function, peripheral neuropathy, and reduced quality of life (QOL). Exercise programs can significantly increase functional capacity when tailored to individual needs, thus improving health. Exercise interventions in cancer rehabilitation, when supported by appropriate nutrition can be effective in attaining a healthy weight and body-composition. The successful rehabilitation program should also include psycho-social education aimed to reduce anxiety and improve motivation. METHODS: The current study aimed to collect information on the post-treatment needs of cancer patients including barriers and expectations facing them, their caregivers and their families through consultation in focus group interviews. Cancer survivors living in the Republic of Ireland were recruited from the University Hospital Galway, community-based cancer centres, cancer support groups and social media platforms to participate in the study and attend a focus group interview. The focus group discussions were designed to obtain information on the collective views of cancer survivors on relevant topics selected. The topics were developed in consultation with a patient and public involvement (PPI) group supporting the study. The topics list was circulated to all participants prior to the focus group. The interviews were audio recorded and transcribed verbatim. Focus group transcripts were analysed subjected to a thematic framework analysis using NVivo. RESULTS: Thirty-six participants took part in 9 focus groups. Our analysis uncovered two main themes. The first theme 'cast adrift with no direction' was grouped into three sub-themes: everything revolves around treatment; panic and fear; and what exercise should I be doing? The second theme 'everybody is different' was clustered into two sub-themes: side effects get in the way; and personalised exercise program. CONCLUSION: The study highlighted the lack of information and support needed by patients living with and beyond cancer. The study also highlighted the need for a personalised exercise programme designed to target the individual patient symptoms that would be ideal for the mitigation of long term symptoms and in improving QOL.
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Enfermería de Práctica Avanzada , Neoplasias , Rol de la Enfermera , Enfermería Oncológica , Atención Dirigida al Paciente , Humanos , Atención Dirigida al Paciente/organización & administración , Enfermería de Práctica Avanzada/organización & administración , Enfermería Oncológica/organización & administración , Neoplasias/enfermería , Neoplasias/terapia , Innovación Organizacional , PredicciónRESUMEN
OBJECTIVE: To discuss the opportunities and challenges of implementing patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) within advanced practice nursing services in cancer care. METHODS: This discussion paper has been informed by an environmental scan of evidence from systematic reviews and primary studies evaluating the use and implementation of PROMs and PREMs. Literature from the contexts of cancer and chronic disease, including nursing and multidisciplinary supportive care literature, has been included. RESULTS: Advanced practice nurses are well-positioned to evaluate and respond to PROMs and PREMs data; several studies have highlighted improved patient outcomes concerning quality of life, symptom distress, and functional status within nurse-led services. Nevertheless, the implementation of PROMs and PREMs in cancer care and nurse-led services is variable. Previous studies have highlighted implementation challenges, which can hinder comparability and generalizability of PROMs and PREMs instruments. Advanced practice nurses should consider these challenges, including ways to use standardized PROM instruments. Electronic PROMs, while efficient, may exclude individuals at risk of inequity. Complex, lengthy, and frequent administration of PROMs may also overburden people living with or after cancer, with people affected by cancer expressing preference for flexible use in some studies. Therefore, the involvement of people affected by cancer in planning for PROMs/PREMs implementation may overcome this challenge. Finally, organizational considerations in implementation should address financial investments, including initial costs for technology and training and consideration of the operationalization of PROMs within existing infrastructure for the seamless utilization of PROMs data. CONCLUSION: Despite the potential of advanced practice nursing services to enhance patient-reported outcomes and experiences, variability in the implementation of PROMs and PREMs poses challenges. Use of validated measures, electronic or paper-based instruments, and the preferences of people affected by cancer for the use of PROMs and PREMs must be carefully considered in consultation with end users for successful implementation. IMPLICATIONS FOR PRACTICE: In planning for the implementation of PROMs and PREMs within nurse-led services, implementation risks may be mitigated through establishing clear guidelines for their use, investment in the development of the required infrastructure, user education, and rigorous implementation processes, including patient involvement in PROMs/PREMs selection.
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Enfermería de Práctica Avanzada , Neoplasias , Enfermería Oncológica , Medición de Resultados Informados por el Paciente , Humanos , Neoplasias/enfermería , Calidad de Vida , FemeninoRESUMEN
The European Oncology Nursing Society (EONS) is a pan-European not for profit society involving approximately 28,000 cancer nurses from 32 countries in the region. The European College of Cancer Nursing (ECCN) exists under the umbrella of EONS and was established in 2020 with a strategic priority to develop, promote and deliver educational opportunities for nurses across Europe. ECCN introduced a pilot on-line education programme for 20 nurses in January 2023. This study evaluated participating nurses' views and experience of learning on the pilot programme. The study adopted a mixed method approach guided by the four levels of the Kirkpatrick theoretical framework. A dominant focus on qualitative data was used with supplementary quantitative data. The Standards for Reporting Qualitative Research (SRQR) was followed. Eleven nurses completed the pre-pilot online questionnaire (response rate 65%) and seven (n = 7) completed the post-pilot questionnaire (41% response rate). Five (n = 5) nurses participated in two focus group interviews. Data analysis resulted in the development of four overarching themes: A wider world of cancer nursing; Shapeless mentorship; Impact on Practice; Learning online and what now? On commencement of online education programmes, nurses value a structured timetable and support from nursing management to maximise engagement with the learning materials.
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Enfermería Oncológica , Humanos , Proyectos Piloto , Enfermería Oncológica/educación , Europa (Continente) , Grupos Focales , Encuestas y Cuestionarios , Investigación Cualitativa , Educación a Distancia , Femenino , Masculino , AdultoRESUMEN
OBJECTIVES: Advanced practice nursing roles in cancer care are diverse and exist across the cancer care continuum. However, the titles used and the scope of practice differ across countries. This diversity is likely to be misleading to patients and influence nurses' contribution to health care. An understanding of the current state of advanced practice nursing roles in cancer care internationally is needed to inform opportunities for future role development and enhance cancer nursing career pathways. METHODS: This scoping review included a systematic search of four databases: MEDLINE, CINAHL, PsycINFO, and Academic Search Complete. Independent screening for papers meeting the review's inclusion criteria was undertaken using online screening software. Data extraction, coding, and mapping were undertaken in NVivo 12. RESULTS: Of the 13,409 records identified, 108 met the review's inclusion criteria. A variety of roles in cancer care settings were described. The United States and the United Kingdom had the most titles for advanced practice nursing roles. Tumor-specific roles were described and integrated into different phases of the cancer care continuum. Trends in continuing professional development for advanced practice nurses in cancer care included the rise in Fellowship programs in the United States and practice-based education in the United Kingdom. CONCLUSIONS: The differences in advanced practice nursing roles in cancer care allow regional and institutional variation to meet the needs of patient populations and health care system demands. However, a lack of clarity surrounding titles and roles results in confusion and underutilization of these nurses' highly specialized skill sets. IMPLICATIONS FOR NURSING PRACTICE: Incongruence in titles and scope of practice internationally will ultimately result in a merging of roles. There is a need for international agreement on education requirements for advanced practice nursing roles to promote career pathways.
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Enfermería de Práctica Avanzada , Neoplasias , Rol de la Enfermera , Enfermería Oncológica , Humanos , Neoplasias/enfermería , Estados Unidos , Reino UnidoRESUMEN
Despite one in three women experiencing abuse by an intimate partner in their lifetime, intimate partner violence (IPV) is under-reported. Globally, IPV routine enquiry is used as part of healthcare response to addressing IPV. This paper presents the views of pregnant women (n = 40) and providers (n = 30) of IPV routine enquiry as part of antenatal care policy in Ireland. Respondents supported IPV routine enquiry as part of usual antenatal care, and while immediate disclosure was recognized as important, it was not a primary expectation. Routine enquiry was seen as a woman's right and a providers' duty to provide holistic, empowered, women centered and safe care and where provision of information and education on IPV is as fundamental as the disclosure of abuse.
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PURPOSE: Approximately 80% of ovarian cancers recur after first-line treatments. Women with ovarian cancer (OC) are therefore particularly vulnerable to experiencing fear of cancer recurrence (FCR). This study aimed to synthesise experiences of fear of cancer recurrence among women living with ovarian cancer. METHOD: A qualitative evidence synthesis (QES) was conducted in accordance with the Enhancing Transparency in Reporting the Synthesis of Qualitative Research (ENTREQ) guidelines. A systematic search of seven databases was undertaken to identify all available qualitative research exploring fear of cancer recurrence in women with OC. Thematic synthesis of extracted data from included studies was undertaken and managed in NVivo. RESULTS: Twenty-two papers reporting on eighteen studies were included in the synthesis. Three main themes were developed (triggers, responses, and coping) and included ten subthemes. FCR was triggered by factors relating to awareness of prognosis, treatment, and negative communication. Women responded to FCR by performing body checking and protecting their families. FCR led to adverse effects on women's wellbeing as it exacerbated uncertainty about their future. Women attempted to cope with FCR through seeking support, regaining control, and redirecting negative thoughts and actions. CONCLUSIONS: Women use a variety of approaches to manage their fear of recurrence. Further research on the most appropriate interventions for FCR tailored specifically to the needs of women with OC is needed.
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Adaptación Psicológica , Miedo , Recurrencia Local de Neoplasia , Neoplasias Ováricas , Investigación Cualitativa , Humanos , Femenino , Neoplasias Ováricas/psicología , Neoplasias Ováricas/terapia , Recurrencia Local de Neoplasia/psicología , Persona de Mediana Edad , Adulto , AncianoRESUMEN
OBJECTIVES: People with advanced breast cancer (ABC) experience complex and debilitating physical symptoms of their disease that can have a profound effect on quality of life. This report provides an overview of the clinical manifestations related to different metastatic sites in ABC and potential oncologic emergencies. DATA SOURCES: Date sources include peer-reviewed papers sourced in electronic databases (CINAHL, MEDLINE, Google Scholar) and national and international best practice guidelines. CONCLUSION: People living with ABC experience multiple symptoms of disease that can impact on quality of life and physical functioning. The most common sites of metastatic disease are bone, lung, liver and brain. Clinical manifestations of ABC include pain, pathologic fractures, pleural effusions, and ascites. Potential oncologic emergencies related to these metastatic sites include hypercalcemia, malignant spinal cord compression, superior vena cava obstruction, and raised intracranial pressure. IMPLICATIONS FOR NURSING PRACTICE: It is important for nurses to have informed knowledge and understanding of these clinical manifestations. This will enable them to be vigilant and perform targeted patient evaluation to assess signs and symptoms with a view to identifying potentially life-threatening emergencies and initiating interventions or appropriate referral or follow-up accordingly.
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Neoplasias de la Mama , Urgencias Médicas , Humanos , Femenino , Calidad de Vida , Neoplasias de la Mama/terapia , Vena Cava Superior , DolorRESUMEN
Background: Seasonal influenza is a significant cause of mortality and morbidity worldwide. Despite annual recommendations, influenza vaccination uptake rates are disproportionately lower among nurses compared to other health care professionals, especially when compared to physicians. Nurses have an additional risk of exposure to influenza infection due to the nature of their work. Aim: To determine the effectiveness of interventions in increasing seasonal influenza vaccination uptake among nurses. Methods: Evidence on the effectiveness of interventions to improve seasonal influenza vaccination uptake among nurses was systematically reviewed. A comprehensive search of six electronic databases and grey literature was undertaken. A minimum of two reviewers completed study selection, data extraction and risk of bias assessment independently. Results: One hundred and thirty-four studies were identified of which one cluster randomised trial met the inclusion criteria. The results of the included study found the implementation of an intervention with multiple components increased nurses' seasonal influenza vaccination rates during a single influenza season in geriatric healthcare settings in France. As the evidence in this review was very limited, it was not possible to make recommendations regarding which interventions were effective at increasing the seasonal influenza vaccination rate for nurses. Conclusion: This systematic review highlights a lack of high-quality studies that assessed interventions to improve the seasonal influenza vaccination of nurses. In view of the likelihood of influenza and the coronavirus (COVID-19) pandemic occurring together, it is imperative to have evidence on effective interventions for the nursing workforce and for policy decision makers.
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AIM: To systematically synthesize undergraduate student nurses' experience of online, blended or distance learning during Covid-19 pandemic. DESIGN: A qualitative evidence synthesis (QES). REVIEW METHODS: A QES. Themes were organized using the 'best fit' framework approach. Methodological limitations and confidence in the review findings were informed by GRADE-CERQual (Confidence in the Evidence from Reviews of Qualitative research). DATA SOURCES: Qualitative literature from five databases including CINAHL, PubMed, Medline, Education Full Text (H.W. Wilson) and ERIC were searched from March 2020 to November 2021. RESULTS: Nine qualitative and two mixed method studies were included in this 'best fit' framework using Chickering and Gamson's Seven Principles for Good Practice in Undergraduate Education. Importance of the social presence of the teacher through effective communication and interpersonal relationships is highlighted. Clinical placement and in-person practical skills training are needed for effective nursing education. CONCLUSIONS: This review highlighted that online content can be developed into efficient and high-quality learner-centred education within blended undergraduate nursing programmes incorporating essential face-to-face and practical components. Various supporting measures are required for both students and faculty. We suggest an adaptation of a 'Blending with Purpose: The Multimodal Model' with key considerations for undergraduate nursing programmes where pedagogical objectives and activities drive the approaches to achieve intended learning outcomes and student satisfaction. IMPLICATIONS FOR THE PROFESSION: Well-designed online programmes using digital tools that support interaction and teamwork are required for undergraduate nursing education. IMPACT: Blended learning approaches offer more flexibility than online learning alone which leads to improved student engagement. Clinical placement and in-person practical skills training are needed for effective nursing education. REPORTING METHOD: 'Enhancing transparency in reporting the synthesis of qualitative research' (ENTREQ) for QES. NO PATIENT OR PUBLIC CONTRIBUTION: No Patient or Public Contribution.
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BACKGROUND: Chronic lymphocytic leukaemia (CLL) is an incurable disease; many people with the condition do not require active treatment and are monitored using a watch and wait approach. AIM: The aim of this study was to explore the experiences of people living with a diagnosis of CLL and on watch and wait. METHODS: Using a descriptive qualitative approach, seven participants on the watch and wait approach were interviewed. Data analysis was guided by systematic text condensation. FINDINGS: Participants reported anxiety, referring to 'wait and worry'. Their information needs were not met, and they resorted to seeking information on possible future treatments themselves. They also experienced feeling like an imposter because they were not receiving active treatment like other patients with cancer. CONCLUSIONS: A greater understanding of how information provision affects levels of anxiety and worry among people living with CLL on watch and wait is needed. In addition, clinical nurse specialists could deliver education on the watch and wait approach, supplemented by video-based educational materials developed by the haematology team.
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Leucemia Linfocítica Crónica de Células B , Humanos , Ansiedad , Investigación Cualitativa , Trastornos de Ansiedad , EmocionesRESUMEN
Myeloma is an aggressive B-cell malignancy resulting from an uncontrolled production of plasma cells in the bone marrow. A multitude of drugs and combinations of drugs are now approved for use to treat this complex disease and nurses require knowledge and skills in recognising and managing new side effects associated with these treatments. This article presents an overview of some of the newer and recently approved drugs and the important side effects that have been associated with them. Clinical nurse specialists and advanced nurse practitioners are at the forefront of patients' treatment journeys and play a central role in supporting patients and families to manage side effects. Through this support, patients can continue the treatments for as long as possible with the aim of maintaining a good quality of life.
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Efectos Colaterales y Reacciones Adversas Relacionados con Medicamentos , Mieloma Múltiple , Enfermeras Clínicas , Humanos , Mieloma Múltiple/tratamiento farmacológico , Calidad de Vida , ConocimientoRESUMEN
BACKGROUND: The World Health Organization declared the COVID-19 pandemic on 11 March 2020. Vaccine development and deployment were swiftly prioritised as a method to manage and control disease spread. The development of an effective vaccine relies on people's participation in randomised trials. Recruitment to vaccine trials is particularly challenging as it involves healthy volunteers who may have concerns around the potential risks and benefits associated with rapidly developed vaccines. OBJECTIVES: To explore the factors that influence a person's decision to participate in a vaccine trial in the context of a pandemic or epidemic. SEARCH METHODS: We used standard, extensive Cochrane search methods. The latest search date was June 2021. SELECTION CRITERIA: We included qualitative studies and mixed-methods studies with an identifiable qualitative component. We included studies that explored the perspectives of adults aged 18 years or older who were invited to take part in vaccine trials in the context of a pandemic or epidemic. DATA COLLECTION AND ANALYSIS: We assessed the title, abstracts and full texts identified by the search. We used a sampling frame to identify data-rich studies that represented a range of diseases and geographical spread. We used QSR NVivo to manage extracted data. We assessed methodological limitations using an adapted version of the Critical Skills Appraisal Programme (CASP) tool for qualitative studies. We used the 'best-fit framework approach' to analyse and synthesise the evidence from our included studies. We then used the Confidence in the Evidence from Reviews of Qualitative research (GRADE-CERQual) assessment to assess our confidence in each finding and develop implications for practice. MAIN RESULTS: We included 34 studies in our review. Most studies related to HIV vaccine trials. The other studies related to Ebola virus, tuberculosis, Zika virus and COVID-19. We developed 20 key findings, under three broad themes (with seven subthemes), that described the factors that people consider when deciding whether to take part in a vaccine trial for a pandemic or epidemic disease. Our GRADE-CERQual confidence was high in nine of the key findings, moderate in 10 key findings and low in one key finding. The main reason for downgrading review findings were concerns regarding the relevance and adequacy of the underlying data. As a result of the over-representation of HIV studies, our GRADE-CERQual assessment of some findings was downgraded in terms of relevance because the views described may not reflect those of people regarding vaccine trials for other pandemic or epidemic diseases. Adequacy relates to the degree of richness and quantity of data supporting a review finding. Moderate concerns about adequacy resulted in a downgrading of some review findings. Some factors were considered to be under the control of the trial team. These included how trial information was communicated and the inclusion of people in the community to help with trial information dissemination. Aspects of trial design were also considered under control of the trial team and included convenience of participation, provision of financial incentives and access to additional support services for those taking part in the trial. Other factors influencing people's decision to take part could be personal, from family, friends or wider society. From a personal perceptive, people had concerns about vaccine side effects, vaccine efficacy and possible impact on their daily lives (carer responsibilities, work, etc.). People were also influenced by their families, and the impact participation may have on relationships. The fear of stigma from society influenced the decision to take part. Also, from a societal perspective, the level of trust in governments' involvement in research and trial may influence a person's decision. Finally, the perceived rewards, both personal and societal, were influencing factors on the decision to participate. Personal rewards included access to a vaccine, improved health and improved disease knowledge, and a return to normality in the context of a pandemic or epidemic. Potential societal rewards included helping the community and contributing to science, often motivated by the memories of family and friends who had died from the disease. AUTHORS' CONCLUSIONS: This review identifies many of the factors that influence a person's decision to take part in a vaccine trial, and these reflect findings from reviews that examine trials more broadly. However, we also recognise some factors that become more important in connection with a vaccine trial in the context of a pandemic or epidemic. These factors include the potential stigma of taking part, the possible adverse effects of a vaccine, the added motivation for helping society, the role of community leaders in trial dissemination, and the level of trust placed in governments and companies developing vaccines. These specific influences need to be considered by trial teams when designing, and communicating about, vaccine trials in the context of a pandemic or epidemic.
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COVID-19 , Efectos Colaterales y Reacciones Adversas Relacionados con Medicamentos , Infección por el Virus Zika , Virus Zika , Adulto , Humanos , Miedo , Amigos , PandemiasRESUMEN
Background: Data sharing enables researchers to conduct novel research with previously collected datasets, thus maximising scientific findings and cost effectiveness, and reducing research waste. The value of sharing, even de-identified, quantitative data from clinical trials is well recognised with a moderated access approach recommended. While substantial challenges to sharing quantitative data remain, there are additional challenges for sharing qualitative data in trials. Incorporating the necessary information about how qualitative data will be shared into already complex trial recruitment and consent processes proves challenging. The aim of this study was to explore whether and how trial teams share qualitative data collected as part of the design, conduct, analysis, or delivery of clinical trials. Methods: Phase 1 involved semi-structured, in-depth qualitative interviews and focus groups with key trial stakeholder groups including trial managers and clinical trialists (n=3), qualitative researchers in trials (n=9), members of research funding bodies (n=2) and trial participants (n=1). Data were analysed using thematic analysis. In Phase 2, we conducted a content analysis of 16 participant information leaflets (PIL) and consent forms (CF) for trials that collected qualitative data. Results: Three key themes were identified from our Phase 1 findings: ' Understanding and experiences of the potential benefits of sharing qualitative data from trials', 'Concerns about qualitative data sharing', and ' Future guidance and funding'. In phase 2, the PILs and CFs received revealed that the benefits of data sharing for participants were only explained in two of the study documents. Conclusions: The value of sharing qualitative data was acknowledged, but there are many uncertainties as to how, when, and where to share this data. In addition, there were ethical concerns in relation to the consent process required for qualitative data sharing in trials. This study provides insight into the existing practice of qualitative data sharing in trials.
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BACKGROUND: Gatekeepers play a crucial role in successfully recruiting participants to nurse-led qualitative research, particularly in clinical settings. AIM: To present the authors' experience of recruiting and conducting qualitative interviews during the COVID-19 pandemic with the carers of patients who have chronic haematological malignancies, and the effects that gatekeepers had on recruitment. DISCUSSION: The authors had to adapt and adjust their research plan because of difficulties in accessing their target population. Establishing and maintaining relationships with gatekeepers and a Patient and Public Involvement (PPI) panel was integral in successfully collecting data. CONCLUSION: Ongoing reflexivity and feedback from supervisors, gatekeepers and PPI members in addition to developing research experience can help researchers to overcome challenges in recruiting difficult-to-access populations. IMPLICATIONS FOR PRACTICE: Researchers need to be prepared for challenges to their research plans and carefully consider the options available for addressing these challenges. Reaching out to others is integral in expanding researchers' ideas.
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COVID-19 , Neoplasias Hematológicas , Neoplasias , Humanos , Cuidadores , PandemiasRESUMEN
Breast cancer is now the most commonly diagnosed cancer worldwide. Approximately 30% of those who present with early breast cancer later develop advanced breast cancer (ABC). Additionally, approximately 6% have advanced breast cancer at diagnosis. New treatment options result in an extended lifespan dominated by cycles of deterioration and stable disease. Specialist nurse knowledge is key to multidisciplinary care of people with ABC; however, access to education on ABC for nurses is not universally available in Europe. This paper describes the development and implementation of an online bespoke program on ABC care for specialist and generalist nurses in Europe. The project team is affiliated with the European Oncology Nurses Society (EONS) and comprises specialist breast cancer nurses, oncology nurse academics and breast cancer advocates associated with EUROPA DONNA Turkey, an independent non-profit European breast cancer organisation. The program development involved (1) a systematic review of ABC educational resources for cancer nurses; (2) a modified four-round Delphi study to seek agreement on curriculum content and (3) curriculum development, conversion to an interactive online platform and translation into four European languages. The program evaluation will be guided by Kirkpatrick's framework. The phases described in this short report could guide others involved in developing bespoke cancer education programs.
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Neoplasias de la Mama , Educación a Distancia , Educación en Enfermería , Enfermeras y Enfermeros , Humanos , Femenino , Competencia Clínica , CurriculumRESUMEN
PURPOSE: People living with a chronic haematological malignancy (CHM) are living longer due to the continued emergence of novel treatments. Their care is mostly delivered in an outpatient setting, and little is known about their experience of this disease trajectory. The aim of this qualitative study was to explore carers' experiences, expressed needs and psychosocial vulnerability. METHOD: In-depth interviews with a purposive sample of carers (n=11) explored their experiences of caring for someone with a CHM and the impact it had on their lives. Reflexive thematic analysis guided data analysis. RESULTS: Two main themes were developed from the interview data: 1) restructured living, and 2) sustaining caring, with six subthemes: shrinking world, constant carer, healthcare professional support, needing information, particularly in the early days, peer support, and taking control. CONCLUSIONS: Caregivers of patients with a CHM undergo a significant life change which is often invisible to others. Identifying carers at risk of psychosocial vulnerability and recognising the caregiver as a member of the care team are significant steps towards addressing the support needs of this population.
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Cuidadores , Neoplasias , Humanos , Investigación Cualitativa , Cuidadores/psicología , Pacientes Ambulatorios , Apoyo Social , Proyectos de InvestigaciónAsunto(s)
Educación en Enfermería , Neoplasias , Humanos , Escolaridad , Educación en Salud , Europa (Continente)RESUMEN
OBJECTIVES: To provide an overview of three consecutive stages involved in the processing of quantitative research data (ie, data management, analysis, and interpretation) with the aid of practical examples to foster enhanced understanding. DATA SOURCES: Published scientific articles, research textbooks, and expert advice were used. CONCLUSION: Typically, a considerable amount of numerical research data is collected that require analysis. On entry into a data set, data must be carefully checked for errors and missing values, and then variables must be defined and coded as part of data management. Quantitative data analysis involves the use of statistics. Descriptive statistics help summarize the variables in a data set to show what is typical for a sample. Measures of central tendency (ie, mean, median, mode), measures of spread (standard deviation), and parameter estimation measures (confidence intervals) may be calculated. Inferential statistics aid in testing hypotheses about whether or not a hypothesized effect, relationship, or difference is likely true. Inferential statistical tests produce a value for probability, the P value. The P value informs about whether an effect, relationship, or difference might exist in reality. Crucially, it must be accompanied by a measure of magnitude (effect size) to help interpret how small or large this effect, relationship, or difference is. Effect sizes provide key information for clinical decision-making in health care. IMPLICATIONS FOR NURSING PRACTICE: Developing capacity in the management, analysis, and interpretation of quantitative research data can have a multifaceted impact in enhancing nurses' confidence in understanding, evaluating, and applying quantitative evidence in cancer nursing practice.