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OBJECTIVES: Advances in science and technology have meant there are numerous treatment options available for people with advanced breast cancer (ABC). However, each therapeutic approach can cause side effects or adverse events, which can significantly affect the person's quality of life, overall well-being, and, in some instances, safety. This report presents an overview of the common side effects of systemic anticancer therapy and ways to manage them. DATA SOURCES: Data sources include peer-reviewed articles sourced in electronic databases and national and international best practice guidelines (ESMO, ASCO, and MASCC guidelines). CONCLUSION: Systemic anticancer therapies have side effects that healthcare professionals need to know about to monitor and manage them in early stages. Nurses play an important role in patient education, early identification, monitoring, and management of treatment side effects. IMPLICATIONS FOR NURSING PRACTICE: People with ABC face many challenges during their treatment journey. Oncology nurses, specialist nurses, and nurse practitioners can be of support by providing preventive measures and side effects management at an early stage. Nurses need to have a good understanding of toxicity management but also advanced tumor-specific cancer knowledge of the different subtypes of ABC and holistic assessment skills. They are also key to providing support and enhancing self-management and early recognition of side effects.
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Neoplasias de la Mama , Humanos , Femenino , Neoplasias de la Mama/tratamiento farmacológico , Calidad de VidaRESUMEN
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
BACKGROUND: Specialist nursing care is a core indicator of quality care for people living with advanced breast cancer. However, access to and quality of nurse education programmes in advanced breast cancer is variable. OBJECTIVES: This study aims to define the topics for inclusion in an international curriculum for an advanced breast cancer education programme. METHODS: A modified four-round Delphi study was undertaken with experts by profession and experience in advanced breast cancer. Thirty-four topics related to advanced breast cancer and six online teaching and learning methods were pre-selected following a systematic review. Between September 2021 and March 2022, the expert panel determined the importance of topics for inclusion in the education programme. Consensus was defined by at least 80 % agreement on the highest three points on a 9-point Likert scale. RESULTS: A total of 31 experts participated in rounds 1-3 of this study, and 156 experts by profession and experience participated in an additional fourth round, including people living with advanced breast cancer (n = 72, 46 %), healthcare professionals (n = 46, 29 %), family members or caregivers of a person diagnosed with advanced breast cancer (n = 30, 19 %) and advocacy professionals working in the area of advanced breast cancer (n = 8, 5 %). In round 4, 36 topics and five of six learning methods reached consensus. CONCLUSIONS: The results of this study provide a framework to develop education programmes in advanced breast cancer, defining the essential elements of curriculum content for such programmes. The results highlight the need for advanced breast cancer education programmes to use multiple teaching and learning methods to promote nurses' understanding of person-centred supportive care and the physical, psychosocial and spiritual issues experienced by people living with advanced breast cancer.
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Neoplasias de la Mama , Enfermeras y Enfermeros , Humanos , Femenino , Consenso , Técnica Delphi , Competencia Clínica , CurriculumRESUMEN
AIM: To review the evidence of how nurse and pharmacist roles have been incorporated into the management of patients undergoing systemic anti-cancer therapy (SACT) services and their impact on patient experience and care provision. DESIGN: Systematic Review. DATA SOURCES: Seven databases were searched on 10 April 2022. REVIEW METHODS: Research studies that met defined inclusion criteria were included. Quantitative findings were converted into textual descriptions and combined with qualitative results for thematic analysis. Data were categorized and aggregated into themes. Heterogeneity of studies meant meta-analysis was not possible. RESULTS: Fifteen papers were included. Three main themes were identified: advanced clinical practice (ACP) SACT service development; ACP skills and qualifications; and the impact of ACP SACT services on patient care and outcomes. There is a variation in tasks undertaken by nurses and pharmacists and role integration is restricted by limited physician engagement. Role titles used and skills and qualifications acquired differ and professional autonomy is variable. Qualitative studies were limited. CONCLUSION: Evidence of how nursing and pharmacist ACP roles are implemented, what skills are essential and how roles are impacting patient experience and outcomes is limited. More research is required to explore patient and physician experience of, and satisfaction with multi-professional care, alongside further evaluation of clinical delivery models.
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Neoplasias , Farmacéuticos , Humanos , Atención a la Salud , Pacientes , Evaluación del Resultado de la Atención al PacienteRESUMEN
BACKGROUND: People with chronic illnesses such as cancer and cardiovascular disease are living longer and often require the support of critical care services. Current health care provision means patients may be discharged home once clinically stable despite still having high care demands including social, emotional, or physical needs. Families are often required to assume caregiving roles. Research into family burden using quantitative methods has increased awareness, however, little qualitative work exists and the development of support interventions for families is required. AIMS: To explore the experience and needs of family members of people with an existing chronic illness who are admitted to the Critical Care Unit (CCU), and to identify the desired components of a family support intervention in the form of a resource toolkit. STUDY DESIGN: A qualitative exploration of family experience and need, and content development for a resource toolkit using focus group methodology. Two focus groups and one face-to-face interview were conducted involving nine adult (≥18 years) family members of adult patients with chronic illness admitted to critical care in the preceding 9 months across two specialist hospitals in the UK. These were digitally recorded, transcribed, and thematically analysed. RESULTS: Four themes were identified: importance of communication, need for support, trauma of chronic illness, and having to provide "Do-it-Yourself" care. The immense responsibility of families to provide care throughout the illness trajectory is highlighted. Understandable information is essential for a family support toolkit. CONCLUSION: Family members often view a critical care episode broadly from diagnosis through to recovery/rehabilitation. Basic communication training skills within critical care should be ensured, alongside coordination of simple solutions. The potential traumatic impact on families should be highlighted early within the pathway, and positive aspects used to harness essential family support. A simple and coordinated approach to a toolkit is preferred. RELEVANCE TO CLINICAL PRACTICE: This study highlights that a critical care experience may impact broadly beyond CCU, and the importance of informing patients and families of this potential experience, prior to or on admission, to aid preparation. Further highlighted is the need for contemporaneous and accurate information from clinicians involved in care. Families report a better experience when there is good collaboration across critical care services and admitting clinical teams. Early involvement of families in overall discharge planning is essential to allow patients and families to adjust and plan for recovery.
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Familia , Hospitalización , Adulto , Humanos , Familia/psicología , Grupos Focales , Cuidados Críticos , Enfermedad Crónica , Enfermedad Crítica , Investigación CualitativaRESUMEN
INTRODUCTION: Novel therapies such as small protein molecule inhibitors and immunotherapies are tested in early phase trials before moving to later phase trials and ultimately standard practice. A key aim of these clinical trials is to define a toxicity profile, however, the emphasis is often on safety with measurements of organ toxicity. Other subjective side effects can be under-reported because they are not measured formally within the trial protocols. The concern from clinical practice is that cognitive toxicity is poorly studied and may be under-reported in this context. This could lead to toxicity profiles of new treatments not being fully described and patients with unmet need in terms of acknowledgement and support of symptoms. This protocol outlines a framework of an exploratory study with feasibility aspects to investigate the impact and experience of cognitive changes for patients on phase I trials. METHODS AND ANALYSIS: This is a mixed-methods study, combining quantitative and qualitative approaches. The sample is 30 patients with advanced cancer who are participating in phase I trials of novel therapies in the early clinical trials unit of a specialist cancer centre. A test battery of validated cognitive assessments will be taken alongside patient reported outcome measures at three time points from baseline, day eight and day 28 post start of treatment. At day 28, a semi-structured interview will be conducted and the narrative thematically analysed. Results will be integrated to offer a comprehensive description of cognitive function in this patient group. ETHICS AND DISSEMINATION: The study has received full HRA and ethical approval. It is the first study to introduce formal cognitive assessments in a cancer phase I trial context. The study has the potential to highlight previously unreported side effects and more importantly unmet need in terms of care for patients who are participating in the trials.
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Efectos Colaterales y Reacciones Adversas Relacionados con Medicamentos , Neoplasias , Humanos , Cognición , Neoplasias/tratamiento farmacológico , Inmunoterapia , Medición de Resultados Informados por el PacienteRESUMEN
BACKGROUND: Access to comprehensive, integrated, multidisciplinary care is one of the most urgent and actionable recommendations of the Advanced Breast Cancer Global Alliance. However, access to specialist breast care units, and specialist breast cancer nurses is variable, influenced by access to specialist education and role recognition. To date, there has not been a synthesis of evidence regarding educational programmes related to advanced breast cancer education for nurses. OBJECTIVES: The aim of this review was to determine the content, mode of delivery, assessment and outcomes of education programmes related to advanced breast cancer for nurses. REVIEW METHODS: A systematic review was undertaken, according to the Joanna Briggs Institute's mixed methods review methodology. DATA SOURCES: MEDLINE, PUBMED, CINAHL, Scopus, PsycInfo, Joanna Briggs Institute, Web of Science and grey literature sources were systematically searched. Eleven publications met the inclusion criteria. Data relating to programme content, mode of delivery, assessment and outcomes were extracted and analysed. RESULTS: This review identifies a limited number of educational programmes within this specialist area of nursing practice. Shortcomings in the development, implementation and evaluation of advanced breast cancer education programmes included limited use of educational standards, theoretical frameworks and patient and public involvement to inform programme development. Evaluation of education programmes related to advanced breast cancer relied predominantly on self-reported learning, with limited consideration of the impacts of education on service delivery, patient experience or quality of care. CONCLUSIONS: Future development of advanced breast cancer education programmes must consider the alignment of programme content and learning outcomes with existing educational and competency standards. Evaluation of educational programmes in this field must endeavour to enhance rigour of methods, incorporating standardised questionnaires, and multiple methods and sources of data to evaluate the broader impacts of advanced breast cancer education for nurses.
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Neoplasias de la Mama , Neoplasias de la Mama/terapia , Femenino , Educación en Salud , Humanos , Aprendizaje , Desarrollo de ProgramaRESUMEN
OBJECTIVE: Colorectal cancer (CRC) is common in older adults, with more than 70% of diagnoses in people aged ≥65 years. Despite this, there is a knowledge gap regarding longer-term outcomes in this population. Here, we identify those older people most at risk of poor quality of life (QoL) and health status in the five years following CRC treatment. MATERIALS AND METHODS: CREW is a UK longitudinal cohort study investigating factors associated with health and wellbeing recovery following curative-intent CRC surgery. Participants completed self-report questionnaires pre-surgery, then at least annually up to five years. Longitudinal analyses explored the prevalence and pre-surgery risk factors of poor QoL (QLACS-GSS) and health status (EQ-5D: presence/absence of problems in five domains) in older (≥65 years) participants over five years. RESULTS: 501 participants aged ≥65years completed questionnaires pre-surgery; 45% completed questionnaires five years later. Oldest-old participants (≥80 years) reported poorer QoL (18% higher QLACS-GSS) and 2-4 times higher odds of having problems with mobility or usual activities, compared with the youngest-old (65-69 years) over follow-up. Baseline higher self-efficacy was significantly associated with better QoL (10-30% lower QLACS-GSS scores compared to those with low self-efficacy) and lower odds of problems in all EQ-5D domains. Adequate social support was significantly associated with better QoL (8% lower QLACS-GSS) and lower odds of problems with usual activities (OR = 0.62) and anxiety/depression (OR = 0.56). CONCLUSION: There are important differences in QoL and health status outcomes for the oldest-old during CRC recovery. CREW reveals pre-surgery risk factors that are amenable to intervention including self-efficacy and social support.
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Neoplasias Colorrectales , Calidad de Vida , Anciano , Anciano de 80 o más Años , Estudios de Cohortes , Neoplasias Colorrectales/diagnóstico , Neoplasias Colorrectales/epidemiología , Neoplasias Colorrectales/cirugía , Estado de Salud , Humanos , Estudios Longitudinales , Encuestas y CuestionariosRESUMEN
OBJECTIVES: The SafeSpace study codesigned and tested a virtual reality (VR) intervention, incorporating relaxation and compassionate mind training to determine acceptability/feasibility in an oncology setting and evaluate impact on physical/psychological well-being and quality of life. DESIGN: A two-phase study. Phase I determined key characteristics using an experienced-based codesign approach. Phase II evaluated the intervention using various measures and qualitative interviews in a mixed methods approach. Descriptive statistics were used to analyse measures data and framework analysis to analyse interviews. SETTING: A specialist cancer centre, UK. PARTICIPANTS: 11 in phase I and 21 in phase II. Participants were in cancer treatment, recovery or palliative care. PRIMARY AND SECONDARY OUTCOME: Primary outcome: acceptability of the intervention, assessed by >60% uptake of three sessions. SECONDARY OUTCOMES: impact on psychological well-being using EQ-5D/QLQ-C30, Profile of Mood Scale, Warwick and Edinburgh Mental Well-being Scale, Depression and Anxiety Severity Scale 21, Self-Compassion Scale, Acceptance and Action Questionnaire and a locally developed questionnaire to capture self-compassion post use. Physiological impact was assessed by change in heart rate (HR)/HR variability and electrodermal activity (EDA). RESULTS: Twenty participants (mean age=48.7 years; SD=16.87); 65% (n=13) completed three sessions. Mental well-being improved following each use and from baseline to after session 3 (VR 1-z=2.846, p≤0.01; VR 2-z=2.501, p≤0.01; VR 3-z=2.492, p≤0.01). There was statistically significant difference in mean scores for EDA at mid-session and post session compared with pre session (F (1.658, 4.973)=13.364, p<0.05). There was statistically significant reduction in stress levels from baseline to post session 3. Participants found the intervention acceptable and highlighted areas for development. CONCLUSION: The intervention is acceptable and feasible and has shown positive effects on mental well-being/stress in the oncology setting. Larger studies are needed to confirm findings.
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Neoplasias , Terapia de Exposición Mediante Realidad Virtual , Realidad Virtual , Estudios de Factibilidad , Humanos , Persona de Mediana Edad , Neoplasias/terapia , Calidad de Vida , Encuestas y CuestionariosRESUMEN
OBJECTIVE: Little is understood about the anxiety experienced by cancer patients undergoing radiotherapy or investigative imaging. Our aim was to identify sources of anxiety, the points along the cancer journey where anxiety occurred and methods to alleviate it. METHODS: Six focus groups were conducted with cancer patients (n = 17), caregivers (n = 3) and healthcare practitioners (HCPs; n = 10) in the radiotherapy department. Patients described specific elements in the care pathway which induced anxiety, while HCPs focused on their perception of the patient experience. Thematic analysis was used to analyse data. RESULTS: Three broad themes emerged: The Environment, The Individual and The Unknown. The physical environment of the hospital, inside the scanner for example, emerged as a key source of anxiety. The impact of cancer on patients' individual lives was significant, with many feeling isolated. The majority of participants described anxiety associated with the unknown. HCPs reported difficulty in identifying the anxious patient. CONCLUSIONS: Anxiety is experienced throughout the cancer pathway. Common sources include the physical environment and the uncertainty associated with having cancer. Identifying both anxiety-inducing factors, and the anxious patients themselves, is crucial to enable targeted interventions to alleviate anxiety.
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Ansiedad , Cuidadores , Ansiedad/etiología , Miedo , Humanos , Cuidados Paliativos , Investigación CualitativaRESUMEN
OBJECTIVES: Novel therapies, such as, small protein molecule inhibitors and immunotherapies are first tested clinically in Phase I trials. Moving on to later phase trials and ultimately standard practice. A key aim of these early clinical trials is to define a toxicity profile; however, the emphasis is often on safety. The concern is cognitive toxicity is poorly studied in this context and may be under-reported. The aim of this review is to map evidence of cognitive assessment, toxicity, and confounding factors within reports from Phase I trials and consider putative mechanisms of impairment aligned with mechanisms of novel therapies. METHODS: A scoping review methodology was applied to the search of databases, including Embase, MEDLINE, Clinicaltrials.gov. A [keyword search was conducted, results screened for duplication then inclusion/exclusion criteria applied. Articles were further screened for relevance; data organised into categories and charted in a tabular format]. Evidence was collated and summarised into a narrative synthesis. RESULTS: Despite the availability of robust ways to assess cognitive function, these are not routinely included in the conduct of early clinical trials. Reports of cognitive toxicity in early Phase I trials are limited and available evidence on this shows that a proportion of patients experience impaired cognitive function over the course of participating in a Phase I trial. Links are identified between the targeted action of some novel therapies and putative mechanisms of cognitive impairment. CONCLUSION: The review provides rationale for research investigating cognitive function in this context. A study exploring the cognitive function of patients on Phase I trials and the feasibility of formally assessing this within early clinical trials is currently underway at the Royal Marsden.
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Cognición , HumanosRESUMEN
OBJECTIVES: Bereavement is associated with negative affective, cognitive, behavioural and physiological responses. However, factors, such as coping, self-efficacy and self-esteem, can buffer negative effects of grief, and can be increased through mutual support interventions, such as shared leisure activities. This study used a non-randomised controlled design to explore the effects of group choir singing on mental health among people who have been bereaved due to cancer. METHODS: A total of 58 adults bereaved in the last 5 years who had not started psychological therapy in the last 12 weeks or medication for anxiety or depression in the last month were recruited and elected to join a choir (n=29) or participate in the non-intervention control group (n=29). Joining a choir involved engaging in 90 min weekly singing and social sessions for 12 weeks with a post-intervention assessment at week 24. We used linear mixed effects models adjusted for demographics, health-related variables, musical engagement and time since bereavement to model changes over time between the two groups in symptoms of anxiety, depression, well-being, self-efficacy and self-esteem. RESULTS: Participants who sang in a choir had more stable symptoms of depression and levels of well-being, as well as gradual improvements in their sense of self-efficacy and self-esteem over the 24 weeks. In contrast, those in the control group showed gradual increases in depressive symptoms, reductions in levels of well-being and self-esteem and no improvement in their self-efficacy. These results were independent of all covariates. CONCLUSIONS: Weekly group singing could be a promising mutual support intervention for people experiencing grief. TRIAL REGISTRATION NUMBER: NCT02756780.
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Aflicción , Canto , Adulto , Depresión/psicología , Pesar , Humanos , Salud Mental , AutoeficaciaRESUMEN
Children with cancer experience pain throughout their cancer trajectory. Pain has short- and long-term negative consequences for children physically and psychologically. Children with cancer spend more time at home with their families and less time in hospital. While this has benefits for quality of life, it shifts responsibility for pain management from healthcare professionals to parents. Little is known about parents' pain management abilities in this setting. This study aimed to understand how parents of children with cancer manage their child's pain at home. A convergent, parallel, mixed methods design including pain diaries, surveys and interviews was used. Participants were parents of children with cancer on active treatment recruited from one tertiary cancer centre. Each data collection method was analysed separately and then integrated. Parents frequently under-medicate their child's pain at home. Practical barriers including the analgesic context and children finding medications unpalatable led parents to prefer non-pharmacological interventions. Attitudinal and practical barriers result in parents having an "empty toolbox" of pharmacological interventions. Consequently non-pharmacological interventions are essential to parents managing their child's cancer pain at home.
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Dolor en Cáncer , Neoplasias , Dolor en Cáncer/terapia , Niño , Conocimientos, Actitudes y Práctica en Salud , Humanos , Neoplasias/terapia , Manejo del Dolor , Padres , Calidad de VidaRESUMEN
PURPOSE: Existing research indicates that physical activity (PA) is beneficial to men with prostate cancer (PCa). We examined the potential of a single-contact peer-support-based behavioural intervention to promote PA engagement in men treated for PCa. METHODS: A mixed methods design was employed, comprising a two-arm pragmatic trial and semi-structured interviews. The intervention was a 10-min PA-based presentation by a former patient, delivered in group seminars that are provided for patients as standard care. Seminars were alternately allocated to (a) cancer exercise specialist talk + patient speaker talk or (b) cancer exercise specialist talk only. Self-reported PA, exercise motivation, quality of life, fatigue and clinical and demographic characteristics were obtained from n = 148 (intervention: n = 69; control: n = 79) patients immediately prior to the seminar, and at follow-up ≈ 100 days later. Data were analysed using ANCOVA models and χ2 tests. Fourteen semi-structured interviews with intervention participants, which explored how the intervention was experienced, were analysed using a grounded theory-style approach. RESULTS: The intervention had no significant effect on quantitatively self-reported PA (p = 0.4). However, the intervention was statistically and clinically beneficial for fatigue (p = 0.04) and quality of life (p = 0.01). Qualitative analysis showed that the intervention was beneficial to psychological wellbeing and some participants had increased intention to engage in PA as a result of the intervention. CONCLUSIONS: A brief one-off PA-based presentation for men with PCa, delivered by a former patient alongside cancer exercise specialist advice, may result in clinically significant benefits to quality of life and may influence PA intention in certain individuals.
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Ejercicio Físico/psicología , Prostatectomía/psicología , Neoplasias de la Próstata/cirugía , Calidad de Vida/psicología , Apoyo Social , Terapia Conductista , Consejo , Fatiga/psicología , Humanos , Masculino , Persona de Mediana Edad , Motivación , Grupo Paritario , Proyectos Piloto , AutoinformeRESUMEN
People with metastatic breast cancer face many challenges and disparities in obtaining optimal cancer care. These challenges are accentuated in underserved patient populations across Europe, who are less likely to receive quality healthcare for reasons including socioeconomic inequalities, educational or cultural status, or geographic location. While there are many local and national initiatives targeted to address these challenges, there remains a need to reduce disparities and improve access to healthcare to improve outcomes, with a focus on multidisciplinary stakeholder engagement. In October 2019, a range of experts in metastatic breast cancer, including healthcare professionals, patient representatives, policymakers and politicians, met to discuss and prioritize the critical needs of underserved patient populations with metastatic breast cancer in Europe. Six key challenges faced by these communities were identified: the need for amplification of the metastatic breast cancer patient voice, better and wider implementation of high-quality guidelines for metastatic breast cancer, more collaboration between stakeholders, tailored support for patients from different cultural and ethnic backgrounds, improved data sharing, and work-related issues. The Expert Panel then conceived and discussed potential actionable goals to address each key challenge. Their conclusions present a set of interrelated approaches to address the different challenges and could serve as the basis for concerted improvement of the lives of patients with metastatic breast cancer in Europe.
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Neoplasias de la Mama , Neoplasias de la Mama/terapia , Etnicidad , Femenino , Disparidades en Atención de Salud , Humanos , Área sin Atención Médica , Defensa del Paciente , Poblaciones VulnerablesRESUMEN
PURPOSE: Cancer nurses across Europe are being tasked with delivery of an increasing number of complex treatments and supportive care interventions as a result of ongoing advances in cancer research, and a rise in cancer incidence due to demographic changes. However, all health systems delivering cancer treatment innovations require access to an educated and motivated nursing workforce to meet demand. This study by the European Oncology Nursing Society examines comparative features of cancer nursing in Estonia, Germany, the Netherlands (NL) and the United Kingdom (UK). METHODS: Descriptive qualitative study using focus groups and individual interviews drawing on the views of cancer nurses, managers and stakeholders from four European countries (n = 97). Data collection was designed around national cancer nursing conferences held in Berlin (Germany), Ede (NL), Harrogate (UK) and Tallinn and Tartu (Estonia) between May 2017 and April 2018. Participants included a mix of nursing grades and specialisms. FINDINGS: According to the participants education and career structure for cancer nursing was most well-developed in the Netherlands and the United Kingdom. In Germany and Estonia developments were taking place at Masters level. None of the countries had recordable qualifications in cancer nursing. Variations existed in terms of advanced practice roles and salary. Workload pressures were common, and were rising, and wellbeing initiatives were not identified. Nurses reported gaining positive feedback from caring for patients. DISCUSSION: As demand for cancer treatment continues to grow there is a need to ensure an adequate supply of cancer nurses with the appropriate education and career structure to support patients. This study provides insights from four countries and suggests the need for better recognition as well as working conditions, education and career structures that advance the potential of the cancer nursing role in Europe.
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Actitud del Personal de Salud , Curriculum , Educación en Enfermería/organización & administración , Neoplasias/enfermería , Personal de Enfermería en Hospital/educación , Personal de Enfermería en Hospital/psicología , Enfermería Oncológica/educación , Adulto , Estonia , Femenino , Alemania , Humanos , Masculino , Persona de Mediana Edad , Países Bajos , Personal de Enfermería en Hospital/estadística & datos numéricos , Enfermería Oncológica/estadística & datos numéricos , Investigación Cualitativa , Reino UnidoRESUMEN
BACKGROUND: Older people are more likely to be living with cancer and multiple long-term conditions, but their needs, preferences for treatments, health priorities and lifestyle are often not identified or well-understood. There is a need to move towards a more comprehensive person-centred approach to care that focuses on the cumulative impact of a number of conditions on daily activities and quality of life. This paper describes the intervention planning process for CHAT& PLANTM, a structured conversation intervention to promote personalised care and support self-management in older adults with complex conditions. METHODS: A theory-, evidence- and person-based approach to intervention development was undertaken. The intervention planning and development process included reviewing relevant literature and existing guidelines, developing guiding principles, conducting a behavioural analysis and constructing a logic model. Optimisation of the intervention and its implementation involved qualitative interviews with older adults with multimorbidity (n = 8), family caregivers (n = 2) and healthcare professionals (HCPs) (n = 20). Data were analysed thematically and informed changes to the intervention prototype. RESULTS: Review findings reflected the importance of HCPs taking a person-centred (rather than disease-centred) approach to their work with older people living with multimorbidity. This approach involves HCPs giving health service users the opportunity to voice their priorities, then using these to underpin the treatment and care plan that follow. Findings from the planning stage indicated that taking a structured approach to interactions between HCPs and health service users would enable elicitation of individual concerns, development of a plan tailored to that individual, negotiation of roles and review of goals as individual priorities change. In the optimisation stage, older adults and HCPs commented on the idea of a structured conversation to promote person-centred care and on its feasibility in practice. The idea of a shared, person-centred approach to care was viewed positively. Concerns were raised about possible extra work for those receiving or delivering care, time and staffing, and risk of creating another "tick-box" exercise for staff. Participants concluded that anyone with the appropriate skills could potentially deliver the intervention, but training was likely to be required to ensure correct utilisation and self-efficacy to deliver to the intervention. CONCLUSIONS: CHAT&PLAN, a structured person-centred conversation guide appears acceptable and appealing to HCPs and older adults with multimorbidity. Further development of the CHAT&PLAN intervention should focus on ensuring that staff are adequately trained and supported to implement the intervention.
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Atención Dirigida al Paciente/métodos , Calidad de Vida/psicología , Automanejo/métodos , Anciano , Anciano de 80 o más Años , Cuidadores , Estudios de Evaluación como Asunto , Práctica Clínica Basada en la Evidencia , Femenino , Personal de Salud , Humanos , Entrevistas como Asunto , Masculino , Multimorbilidad , Relaciones Médico-Paciente , Automanejo/psicologíaRESUMEN
AIMS AND OBJECTIVES: To describe pain manifestation in children with cancer at home and understand how parents assess this pain. BACKGROUND: Pain is experienced by children with cancer throughout their cancer journey. Short-term, and into survivorship, pain has negative physical and psychological consequences. Changes in treatment location mean children with cancer spend more time at home. Little is known about pain experienced by children at home or how parents assess this pain. DESIGN: A mixed-methods convergent parallel study was reported using STROBE. METHOD: Parents of children with cancer on active treatment were recruited from one tertiary cancer centre. Parental attitudes towards pain expression were assessed using surveys. Parents recorded their child's pain manifestation in pain diaries kept for one month. Interviews captured a deeper understanding of pain manifestation and how parents assess this pain at home. Integration occurred after each data collection method was analysed separately. RESULTS: Predominantly children were not in pain at home. However, most children experienced at least one episode of problematic pain over the pain diary period. Surveys showed parents held misconceptions regarding children's pain expression. Interviews diverge from surveys and suggest parents used a range of information sources to assess pain. CONCLUSION: Children with cancer may differ from one another in the manifestation of pain at home resulting in multiple pain trajectories. Parents of children with cancer are able to adequately assess their child's pain using information from multiple sources. RELEVANCE TO CLINICAL PRACTICE: It is not currently possible to predict which children will experience problematic pain at home, so all parents require pain management education prior to discharge. Teaching parents to use bundled approaches to pain assessment may accelerate their learning. Healthcare professionals may benefit from using multiple information sources to assess pain.
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Dolor en Cáncer , Neoplasias , Dolor en Cáncer/diagnóstico , Niño , Humanos , Neoplasias/complicaciones , Dolor/diagnóstico , Dolor/etiología , Manejo del Dolor , Dimensión del Dolor , Padres , Encuestas y CuestionariosRESUMEN
OBJECTIVE: Many older people with cancer live with multimorbidity. Little is understood about the cumulative impact of old age, cancer and multimorbidity on self-management. This qualitative systematic review and synthesis aimed to identify what influences self-management from the perspective of older adults living with cancer and multimorbidity. METHODS: Six databases were systematically searched for primary qualitative research reporting older adults' experiences of living with cancer and multimorbidity (eg, Medline, Embase, and CINAHL). A thematic synthesis was guided by Shippee's model of cumulative complexity. Text labelled as results in the included papers was treated as data. RESULTS: Twenty-eight studies were included. While the included studies varied in their focus, our analysis highlighted a number of important themes consistent across the studies. Health conditions with the greatest negative impact on independent living assumed the greatest importance, sometimes meaning their cancer was a low priority. Self-management practices seen as likely to interfere with quality of life were deprioritized unless viewed as necessary to maintain independence. When burden outweighed capacity, people were reluctant to ask for help from others in their social network. The contribution of formal healthcare services to supporting self-management was relatively peripheral. CONCLUSIONS: Old age and multimorbidity together may complicate self-management after cancer, threatening health and well-being, creating burden and diminishing capacity. Older adults prioritized self-management practices they considered most likely to enable them to continue to live independently. The protocol was registered with Prospero (CRD42018107272).