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1.
Support Care Cancer ; 31(5): 290, 2023 Apr 21.
Artigo em Inglês | MEDLINE | ID: mdl-37084141

RESUMO

PURPOSE: Until today, it is not clear why patients decide to continue with early clinical trial (ECT) participation. Therefore, the aim of this study is to explore to which extent the self-determination theory of Ryan and Deci, according to the ECT enrollment phase, corresponds to the motivations of participants during ECT's. METHODS: This study has a qualitative design. Data were collected using semistructured interviews and were deductively analyzed in Nvivo12 using the thematic analysis approach of Braun and Clarke. RESULTS: As a result of the deductive analysis performed, six themes and twenty subthemes emerged which matched the three personal needs: competence, relatedness, and autonomy (n = 11). "Competence" included the following themes: mixed future expectations, treatment expectations, and control of the outcome. "Relatedness" included the theme altruistic motivation. "Autonomy" included the themes; to live and act in harmony as well as mental and physical burden. CONCLUSION: Participants felt they tried everything and that they were treated to the limit. This not only gives the motivation to continue participating but also a sense of altruism. Despite different burdens, side-effects, and the feeling of being a test subject, the participants will not easily choose to stop participation in order to prevent saying afterwards: "If only I had".


Assuntos
Motivação , Neoplasias , Humanos , Neoplasias/terapia , Altruísmo , Emoções , Autonomia Pessoal , Pesquisa Qualitativa
2.
Lancet Oncol ; 21(12): e564-e574, 2020 12.
Artigo em Inglês | MEDLINE | ID: mdl-33212044

RESUMO

The global oncology nursing workforce is essential to achieving Sustainable Development Goals 3.4 (reduce non-communicable disease morbidity by a third by 2030) and 3.8 (universal health coverage). Unfortunately, challenges to a robust oncology nursing workforce include nursing shortages, recruitment barriers (eg, perceptions of a demanding specialty with complex care and hazardous work environments), and burnout. Innovative recruitment strategies, onboarding and continuing education programmes, occupational safety measures, and burnout prevention interventions are documented solutions. The long-term effect of COVID-19 on oncology care worldwide is unknown, but immediate therapy interruptions, workforce consequences, and threats to standard oncology nursing practice are addressed here. Retention of experienced oncology nurses is crucial for future cancer control in all countries and must be addressed, particularly in resource-constrained countries with few oncology nursing staff and continuing out-migration of nurses to resource-rich countries. As the cancer burden worldwide increases, the future of the oncology nursing workforce is reflected in the call from the International Council of Nurses, Nursing Now, and WHO for nurses to move to higher levels of leadership, advocacy, and policy making (ie, national cancer control planning) and assume responsibility for their key role in achieving global goals for cancer control.


Assuntos
Esgotamento Profissional , COVID-19/epidemiologia , Enfermagem Oncológica/tendências , Pandemias , COVID-19/psicologia , Humanos , SARS-CoV-2/patogenicidade , Recursos Humanos
3.
Lancet Oncol ; 21(12): e555-e563, 2020 12.
Artigo em Inglês | MEDLINE | ID: mdl-33212045

RESUMO

Oncology nurses are at the heart of tackling the increasing global burden of cancer. Their contribution is unique because of the scale and the diversity of care roles and responsibilities in cancer care. In this Series paper, to celebrate the International Year of the Nurse and Midwife, we highlight the contribution and impact of oncology nurses along the cancer care continuum. Delivering people-centred integrated care and optimal communication are essential components of oncology nursing care, which are often played down. More oncology nurses using, doing, and leading research will further show the key nursing impact on care as part of a team. The oncology nurse influence in saving lives through prevention and early detection of cancer is noteworthy. Supportive care, the central pillar of oncology nursing, enables and empowers people to self-manage where possible. Globally, oncology nurses make a great positive difference to cancer care worldwide; their crucial contribution throughout the continuum of care warrants the inclusion and promotion of nursing in every country's cancer strategy. 2020 is the year of the nurse: let us take this learning to the future.


Assuntos
Continuidade da Assistência ao Paciente , Prestação Integrada de Cuidados de Saúde , Neoplasias/enfermagem , Papel do Profissional de Enfermagem , Enfermagem Oncológica , Equipe de Assistência ao Paciente , Assistência Centrada no Paciente , Humanos , Relações Enfermeiro-Paciente , Padrões de Prática em Enfermagem
4.
Palliat Med ; 34(2): 160-178, 2020 02.
Artigo em Inglês | MEDLINE | ID: mdl-32009565

RESUMO

BACKGROUND: Patients with advanced cancer are increasingly expected to self-manage. Thus far, this topic has received little systematic attention. AIM: To summarise studies describing self-management strategies of patients with advanced cancer and associated experiences and personal characteristics. Also, to summarise attitudes of relatives and healthcare professionals towards patient self-management. DESIGN: A systematic review including non-experimental quantitative and qualitative studies. Data were analysed using critical interpretive synthesis. Included studies were appraised on methodological quality and quality of reporting. DATA SOURCES: MEDLINE, Embase, Cochrane Central, PsycINFO, CINAHL, Web of Science and Google Scholar (until 11 June 2019). RESULTS: Of 1742 identified articles, 31 moderate-quality articles describing 8 quantitative and 23 qualitative studies were included. Patients with advanced cancer used self-management strategies in seven domains: medicine and pharmacology, lifestyle, mental health, social support, knowledge and information, navigation and coordination and medical decision-making (29 articles). Strategies were highly individual, sometimes ambivalent and dependent on social interactions. Older patients and patients with more depressive symptoms and lower levels of physical functioning, education and self-efficacy might have more difficulties with certain self-management strategies (six articles). Healthcare professionals perceived self-management as desirable and achievable if based on sufficient skills and knowledge and solid patient-professional partnerships (three articles). CONCLUSION: Self-management of patients with advanced cancer is highly personal and multifaceted. Strategies may be substitutional, additional or even conflicting compared to care provided by healthcare professionals. Self-management support can benefit from an individualised approach embedded in solid partnerships with relatives and healthcare professionals.


Assuntos
Conhecimentos, Atitudes e Prática em Saúde , Neoplasias/terapia , Pacientes/psicologia , Autoeficácia , Autogestão/métodos , Autogestão/psicologia , Apoio Social , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa
5.
Pain Pract ; 20(2): 122-128, 2020 02.
Artigo em Inglês | MEDLINE | ID: mdl-31419371

RESUMO

INTRODUCTION: For adequate pain treatment in patients with cancer, it is important to monitor and evaluate pain regularly. Although the numeric rating scale (NRS) is implemented in hospitals in the Netherlands, pain is still not systematically registered during outpatient consultations. The aim of this study was to assess whether home telemonitoring increases pain registration in medical records of outpatients with cancer. METHODS: Patients with cancer were included in the intervention group (IG) when they visited the outpatient clinic. They received a short message service and an interactive voice response on their mobile phones 3 times a week, asking them to provide their pain score (NRS). When the reported NRS pain score was ≥5, a specialized oncology nurse adapted the pain treatment when necessary. Outcomes were compared to a control group (CG) without home telemonitoring. In both groups, medical records were analyzed and data on pain and analgesics were collected. RESULTS: In each group, the medical records of 54 patients were analyzed on 3 consecutive outpatient visits. In the CG, pain registration or its absence was described in 60 visits (37.0%). In the IG, pain registration or its absence was reported in 83 visits (51.2%). Patients in the IG received a prescription for analgesics significantly more often (36/54 patients [66.6%]) than did patients in the CG (18/54 patients [33.3%]), P < 0.01). CONCLUSION: Home telemonitoring for patients with cancer significantly increases registration of pain and prescriptions of analgesics in outpatient medical records. Home telemonitoring helps to increase the awareness of pain and its management.


Assuntos
Dor do Câncer/terapia , Telefone Celular , Serviços de Assistência Domiciliar , Manejo da Dor/métodos , Telemedicina/métodos , Envio de Mensagens de Texto , Adulto , Idoso , Dor do Câncer/diagnóstico , Dor do Câncer/epidemiologia , Telefone Celular/normas , Feminino , Serviços de Assistência Domiciliar/normas , Humanos , Masculino , Pessoa de Meia-Idade , Monitorização Fisiológica/métodos , Monitorização Fisiológica/normas , Países Baixos/epidemiologia , Manejo da Dor/normas , Telemedicina/normas , Envio de Mensagens de Texto/normas
6.
Palliat Med ; 33(4): 470-474, 2019 04.
Artigo em Inglês | MEDLINE | ID: mdl-30688143

RESUMO

BACKGROUND: Healthcare professionals and researchers in the field of palliative care often have difficulties finding relevant articles in online databases. Standardized search filters may help improve the efficiency and quality of such searches, but prior developed filters showed only moderate performance. AIM: To develop and validate a specific search filter and a sensitive search filter for the field of palliative care. DESIGN: We used a novel, objective method for search filter development. First, we created a gold standard set. This set was split into three groups: term identification, filter development, and filter validation set. After creating the filters in PubMed, we translated the filters into search filters for Ovid MEDLINE, Embase, CINAHL, PsychINFO, and Cochrane Library. We calculated specificity, sensitivity and precision of both filters. RESULTS: The specific filter had a specificity of 97.4%, a sensitivity of 93.7%, and a precision of 45%. The sensitive filter had a sensitivity of 99.6%, a specificity of 92.5%, and a precision of 5%. CONCLUSION: Our search filters can support literature searches in the field of palliative care. Our specific filter retrieves 93.7% of relevant articles, while 45% of the retrieved articles are relevant. This filter can be used to find answers to questions when time is limited. Our sensitive filter finds 99.6% of all relevant articles and may, for instance, help conducting systematic reviews. Both filters perform better than prior developed search filters in the field of palliative care.


Assuntos
Bases de Dados Bibliográficas , Comportamento de Busca de Informação , Cuidados Paliativos , Software/normas
7.
J Adv Nurs ; 75(12): 3535-3543, 2019 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-31441110

RESUMO

AIM: To explore the differences in perceived patient safety culture in cancer nurses working in Estonia, Germany, the Netherlands, and the United Kingdom. DESIGN: An exploratory cross-sectional survey. METHODS: In 2018, 393 cancer nurses completed the 12 dimensions of the Hospital Survey on Patient Safety Culture. RESULTS: The mean score for the overall patient safety grade was 61.3. The highest rated dimension was "teamwork within units" while "staffing" was the lowest in all four countries. Nurses in the Netherlands and in the United Kingdom, scored higher on "communication openness", the "frequency of events reported", and "non-punitive response to errors", than nurses from Estonia or Germany. We found statistically significant differences between the countries for the association between five of the 12 dimensions with the overall patient safety grade: overall perception of patient safety, communication openness, staffing, handoffs and transitions and non-punitive response to errors. CONCLUSION: Patient safety culture, as reported by cancer nurses, varies between European countries and contextual factors, such as recognition of the nursing role and education have an impact on it. Cancer nurses' role in promoting patient safety is a key concern and requires better recognition on a European and global level. IMPACT: Cancer Nursing Societies in any country can use these data as an indication on how to improve patient care in their country. Recognition of cancer nursing as a distinct specialty in nursing will help to improve patient safety.


Assuntos
Atitude do Pessoal de Saúde , Neoplasias/enfermagem , Enfermeiros Especialistas/psicologia , Segurança do Paciente/estatística & dados numéricos , Gestão da Segurança/estatística & dados numéricos , Estudos Transversais , Europa (Continente)/epidemiologia , Humanos , Enfermeiros Especialistas/estatística & dados numéricos , Papel do Profissional de Enfermagem , Enfermagem Oncológica/estatística & dados numéricos , Cultura Organizacional , Inquéritos e Questionários
9.
Support Care Cancer ; 26(2): 635-642, 2018 02.
Artigo em Inglês | MEDLINE | ID: mdl-28929433

RESUMO

BACKGROUND: In the outpatient setting, pain management is often inadequate in patients with cancer-related pain, because of patient- and professional-related barriers in communication and infrequent contacts. The internet may provide new opportunities for monitoring these patients. PURPOSE: The purpose of this study was to investigate whether internet monitoring of cancer-related pain in outpatients was feasible. METHODS: We developed an internet application that contained a pain diary, eConsult, and patient pain education. In the pain diary, patients scored their pain intensity (0-10 Numeric Rating Scale) and analgesic use daily and their side effects twice a week. Feasibility was defined as the percentage of diaries patients completed during the first 6 weeks. RESULTS: We included 100 outpatients. Sixteen were not evaluable due to cognitive problems (2); withdrawal of participation (2); internet problems (2), or because they were too ill (10). During the first 6 weeks, 60% of 84 evaluable patients completed their diary for at least 65% of the days (median number of diaries, 21; range, 3-42) and asked for a median of five eConsults (range, 0-37). Patients most frequently used an eConsult for questions about pain or side effects, how to use their analgesics and to improve their self-management. Over the 6-week period, current pain intensity decreased from 3.3 (SD = 2) to 2.5 (SD = 1.6, p = 0.005), and worst pain intensity decreased from 5.7 (SD = 2) to 3.8 (SD = 2.0, p < 0.001). CONCLUSION: Internet monitoring of pain is feasible in most outpatients with cancer-related pain. The frequent use of the pain diary in the majority of patients indicates that those patients felt confident with the regular assessment of pain.


Assuntos
Dor do Câncer/diagnóstico , Internet , Monitorização Fisiológica/instrumentação , Monitorização Fisiológica/métodos , Manejo da Dor/tendências , Adulto , Idoso , Estudos de Coortes , Coleta de Dados , Feminino , Humanos , Masculino , Pessoa de Meia-Idade
10.
Eur J Cancer Care (Engl) ; 27(6): e12908, 2018 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-30179287

RESUMO

For advanced cancer patients deliberating early clinical trial participation, adequate information about expected effect on quality of life (HRQoL) and hope, may support decision making. The aim was to assess the potential relation of HRQoL to eligibility for phase-I trial participation, and to observe the variations in patient-reported outcomes. Patients completed questionnaires at preconsent (n = 124), baseline (n = 96), and after first evaluation of a phase-I trial (n = 76). The Mann-Whitney U test was used to test differences between eligible and ineligible patients. Univariate logistic regression was performed for eligibility. Factorial repeated-measures ANOVA compared the outcomes of patients continuing vs. stopping participation after first evaluation over time. Eligibility is associated with significant better global health OR = 0.946, 95% CI [0.918, 0.975], p = 0.001, physical functioning OR = 0.959, 95% CI [0.933, 0.985], p = 0.002, role functioning OR = 0.974, 95% CI [0.957, 0.991] and better appetite OR = 1.114 95% CI [1.035, 1.192]. HRQoL outcomes like global health, social functioning and appetite decline in all patients and differ between patients continuing or having to end participation. Over time, hope and tenacity decline in all patients and coping strategies alter in patients stopping participation. Trial participation influences patient-reported outcomes. Global health may predict for eligibility and trial continuation. Informing patients could affect patients' decision making.


Assuntos
Ensaios Clínicos Fase I como Assunto , Nível de Saúde , Esperança , Neoplasias/terapia , Qualidade de Vida/psicologia , Sujeitos da Pesquisa/psicologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Apetite , Estudos de Coortes , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias/patologia , Estudos Prospectivos , Papel (figurativo) , Autorrelato , Participação Social/psicologia
11.
Palliat Med ; 31(6): 553-558, 2017 06.
Artigo em Inglês | MEDLINE | ID: mdl-27507634

RESUMO

BACKGROUND: For patients with cancer-related pain, the numeric rating scale is the most frequently used instrument to measure pain intensity. In the literature, it has been suggested to interpret patient-reported ratings of pain in relation to the pain intensity which is acceptable to the individual patient. AIM: We aimed to examine the feasibility and course of acceptable pain intensity. DESIGN: A secondary analysis of a randomized controlled trial that tested the effectiveness of standard care versus standard care supplemented by a pain consultation combined with a patient pain education program. SETTING: A total of 72 patients were included from an outpatient oncology clinic of a university hospital. They were diagnosed with cancer-related nociceptive pain with an average pain intensity ⩾4. RESULTS: Most patients (97%) were able to give a score for acceptable pain. Almost half of the patients scored their acceptable pain in the range of moderate to severe. Patients' ratings of acceptable pain were stable; after 8 weeks, 69% of patients had a variation of up to 1 point compared to baseline. However, the mean acceptable pain intensity remained equal in the standard care group (from 4.6 (range: 0-8) to 5.0 (range: 2-8)) and decreased in the intervention group (from 4.6 (range: 2-8) to 3.8 (range: 0-7, p < 0.01), difference between groups p < 0.05). CONCLUSION: Measurement of acceptable pain intensity is feasible. Patients with additional pain treatment became more critical and accepted less pain. More research is needed before we can use acceptable pain intensity as a reference for the interpretation of pain ratings.


Assuntos
Neoplasias/complicações , Medição da Dor/métodos , Dor/diagnóstico , Educação de Pacientes como Assunto , Adulto , Idoso , Estudos de Viabilidade , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Dor/psicologia , Manejo da Dor , Limiar Sensorial
12.
J Adv Nurs ; 73(12): 3144-3153, 2017 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-28702945

RESUMO

AIM: To identify, appraise and synthesize the available evidence relating to the value and impact of cancer nursing on patient experience and outcomes. BACKGROUND: There is a growing body of literature that recognizes the importance and contribution of cancer nurses, however, a comprehensive review examining how cancer nurses have an impact on care quality, patient outcomes and overall experience of cancer, as well as cost of services across the entire cancer spectrum is lacking. DESIGN: A systematic review and meta-analysis using Cochrane methods. METHODS: We will systematically search 10 electronic databases from 2000, with pre-determined search terms. No language restrictions will be applied. We will include all randomized and controlled before-and-after studies that compare cancer nursing interventions to a standard care or no intervention. Two reviewers will independently assess the eligibility of the studies and appraise methodological quality using the Cochrane Risk of Bias tool. Disagreements will be resolved by discussion and may involve a third reviewer if necessary. Data from included studies will be extracted in accordance with the Template for intervention Description and Replication reporting guidelines. Missing data will be actively sought from all trialists. Data will be synthesized in evidence tables and narrative to answer three key questions. If sufficient data are available, we will perform meta-analyses. DISCUSSION: This review will allow us to systematically assess the impact of cancer nursing on patient care and experience. This evidence will be used to determine implications for clinical practice and used to inform future programme and policy decisions in Europe.


Assuntos
Enfermagem Baseada em Evidências , Enfermagem Oncológica , Europa (Continente) , Humanos , Relações Enfermeiro-Paciente , Sociedades de Enfermagem , Revisões Sistemáticas como Assunto
13.
Pain Pract ; 17(5): 616-624, 2017 06.
Artigo em Inglês | MEDLINE | ID: mdl-27739244

RESUMO

BACKGROUND: Inadequate adherence to prescribed analgesics may be one of the reasons why patients with cancer experience unrelieved pain. Adherence is directly influenced by patients' barriers about pain management. Patient pain education programs (PEPs) have been developed to reduce patients' barriers and increase patients' adherence to their analgesics. The purpose of this article was to evaluate patients' adherence in patients receiving a pain consult and patient pain education in comparison with patients receiving standard pain treatment (standard care [SC]), to better explore the difficulties in medication adherence in cancer-related pain and the effects of PEP. METHODS: In 54 adult outpatients with cancer-related pain, patients' adherence to the prescribed around-the-clock analgesics was measured with a Medication Event Monitoring System, in the following time intervals: weeks 1 and 2, weeks 3 and 4, and weeks 7 and 8 after randomization. Adherence was differentiated into taking adherence, taking the correct dose, and taking analgesics at the right time intervals. RESULTS: Taking adherence increased in the intervention group compared to baseline (from 91% to 93%) and decreased in the SC group (from 85% to 78%; P < 0.05). At the end of the study, more patients in the intervention group took their analgesics at the right intervals (78%) than did patients in the SC group (64%, P < 0.05). During the study, patients were more adherent to opioids than to World Health Organization step 1 analgesics. CONCLUSION: The combined intervention can increase adherence. The true problem in pain management is that patients do not take their prescribed analgesics at the right time intervals. With the detailed adherence information from this study, it is possible to further tailor patient education to the individual patient.


Assuntos
Analgésicos/uso terapêutico , Adesão à Medicação/estatística & dados numéricos , Neoplasias/complicações , Pacientes Ambulatoriais/estatística & dados numéricos , Dor/tratamento farmacológico , Educação de Pacientes como Assunto/métodos , Adulto , Idoso , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Dor/etiologia , Manejo da Dor/métodos
14.
Int J Nurs Stud ; 158: 104864, 2024 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-39094220

RESUMO

BACKGROUND: As frontline caregivers, nurses often find themselves at the crossroads of complex ethical decisions that can significantly impact patient outcomes and their own well-being. Identifying the areas of experienced moral dilemmas in the workplace and gaining insight into the prevalence of moral distress can lead to a healthier workplace environment. OBJECTIVE: This study aims to examine the frequency, intensity and level of moral distress among nurses who work in a hospital, and to identify the variables associated with the level of moral distress. DESIGN: Cross-sectional study. SETTING: One university hospital and six general hospitals. PARTICIPANTS: 654 of the 1095 nurses working on inpatient units filled out the questionnaire (response rate 60 %). METHODS: The intensity and frequency of moral distress was assessed using the Moral Distress Scale-Revised (MDS-R). We also asked two additional questions about considering leaving their job, and if they could describe a distressing case and how moral distress was discussed. Multivariable regression analysis was conducted to identify the variables associated with the level of moral distress. RESULTS: The overall mean MDS-R score of the 654 included nurses was low at 36.4 (SD 26). Nurses reported to have frequent dilemmas regarding organizational aspects and aspects of end-of-life care. The multivariable analyses showed that higher levels of moral distress were experienced by registered nurses, nurses working on a medical ward, and nurses who had ever left or considered leaving their job, or considering leaving their job at the moment. CONCLUSIONS: Although nurses in our study experiences low levels of moral distress, they do experience moral dilemmas related to organizational topics and end of life care. We all need to pay attention to these dilemmas and how to discuss them in order to achieve a resilient nursing profession at a time of major nursing shortages. TWEETABLE ABSTRACT: Caring for increasingly complex patients in a dynamic healthcare system is likely to continue to produce morally challenging scenarios.


Assuntos
Recursos Humanos de Enfermagem Hospitalar , Estudos Transversais , Humanos , Recursos Humanos de Enfermagem Hospitalar/psicologia , Adulto , Feminino , Masculino , Princípios Morais , Pessoa de Meia-Idade , Inquéritos e Questionários , Estresse Psicológico
15.
Eur J Oncol Nurs ; 69: 102539, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-38460391

RESUMO

PURPOSE: Many cancer survivors, facing the consequences of their disease and its treatment, have medical and supportive aftercare needs. However, limited knowledge exists regarding the relationship between support needs and survivors' self-management skills. The study aim is to explore factors contributing to cancer survivors' self-management skills. METHODS: A cross-sectional study was conducted among cancer survivors (n = 277) of two outpatient oncology clinics at a university hospital in the Netherlands. Patients with head and neck cancer (n = 55) who had received radiotherapy and cisplatin or cetuximab were included, as well as patients who had undergone hematopoietic stem cell transplantation (n = 222). The primary outcome was self-management skills, assessed using the Partners in Health Scale (PIH), which comprises two subscales: knowledge and coping (PIH-KC), and recognition and management of symptoms, and adherence to treatment (PIH-MSA). Secondary outcomes were quality of life (EORTC QLQ-C30), self-efficacy (SECD6), patient-centered care (CAPHS), and social support (HEIQ). Machine learning-based Random Forest models were employed to construct associative models. Feature Importance (FI) was used to express the contribution to the model. RESULTS: High emotional quality of life (FI = 33.1%), increased self-efficacy (FI = 22.2%), and greater social support (FI = 18.2%) were identified as key factors contributing to cancer survivors' self-management knowledge (PIH-KC). Furthermore, greater support from professionals (FI = 36.1%) and higher self-efficacy (FI = 18.2%) were found to benefit participants' recognition and management, and therapy adherence (PIH-MSA). CONCLUSIONS: A patient-centered relationship between nurses and cancer survivors is essential for therapy adherence and the management of aftercare needs. Training to provide this holistic self-management support is required.


Assuntos
Sobreviventes de Câncer , Neoplasias , Autogestão , Humanos , Sobreviventes de Câncer/psicologia , Qualidade de Vida/psicologia , Estudos Transversais , Sobreviventes/psicologia , Neoplasias/terapia
16.
Heliyon ; 9(9): e19752, 2023 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-37809531

RESUMO

Objective: The Covid -19 pandemic has had a major influence on the organization of cancer care. Little is known about how patients with cancer and their relatives experienced this period. This study explored these experiences and levels of distress and resilience of Dutch cancer patients and their family caregivers during the Covid-19 pandemic. Methods: The qualitative design included in-depth interviews with cancer patients and their family caregivers to explore their experiences. The distress thermometer (NCCN-DT) and resilience questionnaire (CD-RISC2) were used for contextualizing. Data were analyzed by thematic analysis and descriptive statistics. Results: 40 patients with breast cancer, lung cancer, colorectal cancer, or melanoma who received active systemic anti-cancer therapy, were included with a median age of 60 years[SD11.1]. We also included fourteen family caregivers with a median age of 60 years [SD8.6].Five themes were identified: (1) Living with cancer during Covid-19, (2) Changes in cancer care, (3) Information and support, (4) Safety inside the hospital, and (5) Impact of vaccination. The mean score of NCCN-DT was 2.9[SD2.4] for patients and 4.3[SD2.7] for family caregivers. Mean score of CD-RISC2 was 6.6[SD1.4] for patients and 7.2[SD1] for family caregivers. Conclusions: Patients felt vulnerable during the pandemic and were strict in following the safety precautions. The limited companionship of family caregivers was experienced as the biggest restraint. In general, they felt safe inside the hospital. Vaccination brought some relief. Patients were satisfied with the provided support, but areas were identified which are amenable for redesigning care processes.

17.
Semin Oncol Nurs ; 39(5): 151475, 2023 10.
Artigo em Inglês | MEDLINE | ID: mdl-37633761

RESUMO

PURPOSE: Cancer has a major impact on the individual patient and their family, especially children. However, little is known about the needs of adolescents (10-19 years) whose parent is diagnosed with cancer, especially breast cancer. Insights into psychosocial needs are important to develop appropriate guidance and support for these adolescents. The aim of this study is to explore the psychosocial needs of adolescents whose parent is diagnosed with breast cancer to improve the support for these adolescents. DATA SOURCES: This is an exploratory, qualitative study. In-depth interviews were conducted, and an interview guide was designed with the following topics: experiences, needs, and support. Participants were selected purposively and approached via the parent(s) after consultation. Interviews were audiotaped, transcribed, and thematically analyzed by using the software program NVivo. CONCLUSION: Fourteen adolescents (12-19 years) were interviewed, which resulted in five themes: distraction, support, being able to talk about it, information, and continuing a normal life. Adolescents whose parent is diagnosed with breast cancer need the best possible preservation of their normal lives. It is important for them to be able to share their story and find support from someone close to them. IMPLICATION FOR NURSING PRACTICE: The route to the adolescent is always through the parent. Healthcare professionals can discuss the well-being of the adolescent during regular consultation with the parent. If there are concerns, healthcare professionals can advise the parent about the possible needs of the adolescent and could coach the parent in supporting the adolescent to discuss their needs.


Assuntos
Neoplasias da Mama , Criança , Humanos , Adolescente , Feminino , Neoplasias da Mama/diagnóstico , Apoio Social , Pais/psicologia , Pesquisa Qualitativa
18.
Eur J Oncol Nurs ; 63: 102241, 2023 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-36821884

RESUMO

BACKGROUND: Patient-reported outcomes (PROs) are key indicators of health status and functioning, coming directly from the patient. Comprehensive monitoring of PROs enables implementation of person-centred care. Currently, the PROs that patients with advanced renal cell carcinoma (RCC) or hepatocellular carcinoma (HCC) consider of greatest importance remains unknown. METHODS: A rapid literature review was carried out to identify PROs commonly reported in clinical studies of patients with advanced RCC/HCC. We searched MEDLINE, CINAHL & PsycInfo for relevant peer-reviewed publications in the period from 2000 to 2021. Pre-specified selection criteria were applied to all retrieved records. Findings were integrated into a narrative synthesis. RESULTS: Eighty-one studies met our selection criteria and were retained. Most research was on advanced RCC (n = 64, 79%); 46 studies (57%) were drug trials. Only twenty-six studies (32%) employed PROs as their primary endpoint. Most PROs concerned physical symptoms (45% RCC, 54% HCC) and emotional wellbeing (19% RCC, 16% HCC). The most common outcome measured was quality of life (65% of the total), followed by fatigue (62%) and pain (54%). Whether selection of these PROs was patient-driven was not reported. CONCLUSIONS: A wide range of PROs were assessed. Deficits in PROs often cause patients to seek out help; however, which PROs matter the most to people with advanced RCC/HCC must be further clarified. Targeting, monitoring, and responding to the 'right' PROs can enhance provision of person-centred care in advanced RCC/HCC and augment the clinical efficacy of established and emerging targeted therapies.


Assuntos
Carcinoma Hepatocelular , Carcinoma de Células Renais , Neoplasias Renais , Neoplasias Hepáticas , Humanos , Carcinoma de Células Renais/tratamento farmacológico , Carcinoma de Células Renais/patologia , Qualidade de Vida , Medidas de Resultados Relatados pelo Paciente , Neoplasias Renais/tratamento farmacológico , Neoplasias Renais/patologia
19.
Eur J Oncol Nurs ; 63: 102271, 2023 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-36827835

RESUMO

Cancer nursing has evolved to meet the demands of rising cancer incidence, newer and more complex treatment options, and the emergence of specialist roles supporting patients from pre-diagnosis, through treatment, survivorship and end of life care. Nurses are involved in direct and in-direct care of people at risk of, and living with and after cancer in diverse contexts. As a result, nurses are positioned to have a significant influence on the processes and outcomes of cancer care, through education, research, policy, practice and leadership. However, nursing and cancer care face challenges, arising from workforce shortages, under-investment in services and under-representation in decision-making. This paper discusses the evolution of cancer nursing across education, policy, research, profession and practice, and sets an agenda for innovation and disruption across these domains to ensure sustainability of cancer care services and care for people living with and after cancer. We argue for the continued advancement of cancer nursing with critical focus on identifying and addressing inequities in role recognition and access to specialist cancer nursing education throughout Europe. Partnership, exchange of learning, and co-design will be central to progressing education, evidence and policy to support future growth in the cancer nursing workforce and embed cancer nurses in research and policy setting at local, national and international levels.


Assuntos
Educação em Enfermagem , Neoplasias , Recursos Humanos de Enfermagem , Humanos , Enfermagem Oncológica , Políticas , Europa (Continente)
20.
Semin Oncol Nurs ; 39(4): 151409, 2023 08.
Artigo em Inglês | MEDLINE | ID: mdl-37012164

RESUMO

OBJECTIVES: There is little research to help health care professionals understand what patient outcomes are considered a priority in advanced liver or kidney cancer. Knowing what is important to patients can help promote person-centered approaches to treatment and disease management. The aim of this study was to identify those patient-reported outcomes (PROs) that patients, carers, and health care professionals consider as "core" when providing care to those with advanced liver or kidney cancer. DATA SOURCES: A three-round Delphi study was undertaken to ask experts by profession or experience to rank PROs identified from a previous literature review. Fifty-four experts, including people living with advanced liver or kidney cancer (44.4%), family members and caregivers (9.3%), and health care professionals (46.8%), reached consensus on 49 PROs including 12 new items (eg, palpitations, hopefulness, or social isolation). Items with the highest rate of consensus included quality of life, pain, mental health, and capacity to do daily activities. CONCLUSION: People living with advanced liver or kidney cancer experience complex health care needs. Some important outcomes were not actually captured in practice in this population and were suggested as part of this study. There are discrepancies between the views of health care professionals, patients, and family in what is important, highlighting the need of using measures to facilitate communication. IMPLICATIONS FOR NURSING PRACTICE: Identification of priority PROs reported here will be key to facilitate more focused patient assessments. The actual use of measures in cancer nursing practice to allow monitoring of PROs must be tested for feasibility and usability.


Assuntos
Carcinoma Hepatocelular , Carcinoma de Células Renais , Neoplasias Renais , Neoplasias Hepáticas , Humanos , Qualidade de Vida , Carcinoma de Células Renais/terapia , Técnica Delphi , Neoplasias Hepáticas/terapia , Medidas de Resultados Relatados pelo Paciente , Neoplasias Renais/terapia
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