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BACKGROUND: Childhood, adolescent, and young adult (CAYA) cancer survivors, at risk for late effects, including cancer-related fatigue, cardiovascular issues, and psychosocial challenges, may benefit from interventions stimulating behaviour adjustments. Three nurse-led eHealth interventions (REVIVER) delivered via video calls and elaborating on person-centred care, cognitive behaviour therapy and/or motivational interviewing were developed. These interventions target: 1) fatigue management, 2) healthier lifestyle behaviours, and 3) self-efficacy and self-management. This study aimed to assess the feasibility and potential effectiveness of the REVIVER interventions for CAYA cancer survivors and healthcare professionals. METHODS: In a single-group mixed methods design, CAYA cancer survivors aged 16-54, more than five years post-treatment, were enrolled. Feasibility, assessed via Bowen's outcomes for feasibility studies, included acceptability, practicality, integration and implementation, demand and adherence. Qualitative data from semi-structured interviews and a focus group interview with survivors and healthcare professionals supplemented the evaluation. Paired sample t-tests assessed changes in self-reported quality of life, fatigue, lifestyle, self-management, and self-efficacy at baseline (T0), post-intervention (T1), and 6-month follow-up (T2). RESULTS: The interventions and video consults were generally acceptable, practical, and successfully integrated and implemented. Success factors included the nurse consultant (i.e., communication, approach, and attitude) and the personalised approach. Barriers included sustainability concerns, technical issues, and short intervention duration. Regarding demand, 71.4%, 65.4%, and 100% of eligible CAYA cancer survivors engaged in the fatigue (N = 15), lifestyle (N = 17) and empowerment (N = 3) intervention, respectively, with 5, 5 and 2 participants interviewed, correspondingly. Low interest (demand) in the empowerment intervention (N = 3) and dropout rates of one-third for both fatigue and empowerment interventions were noted (adherence). Improvements in quality of life, fatigue (fatigue intervention), lifestyle (lifestyle intervention), self-efficacy, and self-management were evident among survivors who completed the fatigue and lifestyle interventions, with medium and large effect sizes observed immediately after the intervention and six months post-intervention. CONCLUSIONS: Our study demonstrates the feasibility of nurse-led video coaching (REVIVER interventions) despite lower demand for the empowerment intervention and lower adherence to the fatigue and empowerment interventions. The medium and high effect sizes found for those who completed the interventions hold potential clinical significance for future studies investigating the effectiveness of the REVIVER interventions.
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Sobreviventes de Câncer , Estudos de Viabilidade , Qualidade de Vida , Humanos , Sobreviventes de Câncer/psicologia , Adolescente , Feminino , Masculino , Adulto Jovem , Adulto , Pessoa de Meia-Idade , Telemedicina , Tutoria/métodos , Autoeficácia , Fadiga/etiologia , Neoplasias/enfermagem , Neoplasias/psicologia , Terapia Cognitivo-Comportamental/métodos , Autogestão/métodos , Criança , Entrevista Motivacional/métodosRESUMO
BACKGROUND: To date, there is little understanding of how caring during advanced cancer can be a transformational experience for personal becoming for family caregivers (FCGs). FCGs experience personal becoming as they create their own meaning of health and illness and choose patterns relating to the self-identity of the past while reaching forward into the unknowns. Gaining greater insight into a potentially positive aspect of cancer caregiving can contribute to FCG well-being and quality of life. OBJECTIVES: This article identifies I-Poems within cancer caregiver narratives and explores them for themes of personal becoming. The narrative environment created space for FCGs to construct and share their voices; at the same time, the analytic method of poetic inquiry provided the voice of the FCGs to be seen, heard, and contextually explored. METHODS: As a secondary analysis, we used five cancer caregiver narrative texts obtained from the primary study to create individual I-Poems. Each of the I-statements within the cancer caregiver narrative texts was lifted and repositioned into a poem format while retaining the chronological order and voice of the participant. We then explored the I-Poems for converging themes of personal becoming as emerged from the primary narrative-thematic analysis. RESULTS: I-Poems were created from each of the five participant caregivers' narratives and then explored for themes of personal becoming. Each of the participant stories is briefly introduced, followed by their I-Poem. We found that the I-Poems converged with emergent themes and provided a first-person representation of their caring journey and transformation of being. DISCUSSION: I-Poems are a postmodern form of poetic inquiry that can be used alongside thematic analysis to explore personal meaning of caring for someone with advanced cancer and how FCGs experience personal transformation of self. Although we found I-Poems to be a meaningful and useful form of analysis for some narrative data, we propose an evolved genre of poetic inquiry-We-Poems-to be used in dyadic nursing research and with FCGs who are in partnered relationships.
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Cuidadores , Neoplasias , Humanos , Cuidadores/psicologia , Neoplasias/psicologia , Neoplasias/enfermagem , Feminino , Masculino , Pessoa de Meia-Idade , Adaptação Psicológica , Idoso , Narração , Qualidade de Vida/psicologia , Pesquisa Qualitativa , Adulto , Poesia como AssuntoRESUMO
AIM: To investigate the feasibility and acceptability of the training process, procedures, measures and recruitment strategies necessary for a future investigation to test the reliability and validity of using positivity resonance measures in health care encounters. BACKGROUND: Although the measurement of positivity resonance is promising, and non-participant observation is considered effective, their approaches to studying nurse-patient relationships have not been fully explored. DESIGN: A mixed-methods observational study. METHODS: Video recordings of 30 nurse-patient dyads completing telehealth video visit encounters were edited and coded using behavioural indicators of positivity resonance. A post-visit survey gathered data on the participants' perceptions of positivity resonance and the study procedures. The research team completed memos and procedural logs to provide narrative data on the study's training, coding, recruitment and operational procedures. The study included 33 persons with cancer and 13 oncology nurses engaging in telehealth video visit encounters at an academic oncology ambulatory care center located in the southeastern United States. RESULTS: Study procedures were found to be feasible and acceptable to participants. An adequate sample of participants (N = 46) were enrolled and retained in the study. Interrater reliability, as evidenced by Cohen's weighted kappa, ranged from .575 to .752 and interclass correlation coefficients >.8 were attainable within a reasonable amount of time and with adequate training. Behavioural indicators of positivity resonance were observed in all telehealth visits and reported by the participants in the perceived positivity resonance survey. The Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) checklist guided reporting. CONCLUSIONS: Designing research around the concept of positivity resonance is an innovative and feasible approach to exploring how rapport is cultivated within nurse-patient relationships. RELEVANCE TO PROFESSIONAL PRACTICE: Measuring positivity resonance may hold promise for exploring patient and nurse outcomes including trust, responsiveness, health-related behaviours, well-being, resilience and satisfaction. REPORTING METHOD: The Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) checklist guided the reporting of results to ensure that adequate details of the study were provided to ensure an accurate and complete report. PATIENT OR PUBLIC CONTRIBUTION: Planning of the research design and study procedures was done in consultation with nurse clinicians with experience with telehealth and managers responsible within the practice setting where the study was conducted. This ensured the study procedures were ethical, safe, secure and did not create unnecessary burden to the study participants. The study included collecting data from nurse and patient participants about the acceptability of the study procedures.
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Estudos de Viabilidade , Relações Enfermeiro-Paciente , Telemedicina , Comunicação por Videoconferência , Humanos , Feminino , Masculino , Pessoa de Meia-Idade , Adulto , Idoso , Neoplasias/enfermagem , Reprodutibilidade dos Testes , Sudeste dos Estados UnidosRESUMO
OBJECTIVES: (1) To describe existing tools to assess the burden of informal caregivers of people with cancer, (2) to describe how these tools have been validated and (3) to describe the areas of interest of existing assessment tool entries. BACKGROUND: The caregiver burden of informal caregivers of people with cancer greatly affects their lives. There is a wide variety of relevant assessment tools available, but there are no studies to help researchers to select tools. METHODS: A search was conducted using the keywords 'cancer', 'caregiver', 'burden' and 'scale' in Medline (PubMed), CINAHL and EMBASE to include articles that developed or applied tools to assess the burden on informal caregivers of cancer patients. Once eligible tools were identified, we searched their 'primary reference' studies. If the original scale was assessed in a population other than informal caregivers of cancer patients, we again searched for psychometric measures in the population of caregivers of cancer patients. RESULTS: This study retrieved 938 articles on developing or applying the informal caregiver burden instrument for cancer patients, including 42 scales. Internal consistency of the original scales ranged from 0.53 to 0.96. Nineteen scales initially developed to assess caregiver burden for patients with dementia, stroke and other disorders were later used for caregivers of cancer patients, eight of which have not yet been validated. Reclassifying all scale domains of concern revealed that scale assessments focused more on caregivers' physical health, emotional state and caregiving tasks. CONCLUSION: This review identifies many scales for assessing informal caregiver burden in cancer patients and gives scales recommended. However, a portion still needs to be validated. The development of a new scale proposes to be based on a theoretical framework and to consider dimensions for assessing support resources. IMPACT: What problem did the study address?: This paper collates assessment tools on the burden of informal carers of people with cancer. It also provides information on the applicable population, reliability and validity. What were the main findings?: 41 scales could be considered for use, eight of which have not been validated. The scales focus more on assessing caregivers' physical health, emotional state and caregiving tasks, and less on the dimension of support resources. Where and on whom will the research have an impact?: There are implications for informal carers of cancer patients in hospitals or in the community, as well as for relevant researchers. REPORTING METHOD: Retrieved with reference to systematic evaluation. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution.
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Cuidadores , Neoplasias , Humanos , Neoplasias/enfermagem , Neoplasias/psicologia , Cuidadores/psicologia , Psicometria/instrumentação , Sobrecarga do Cuidador/psicologia , Efeitos Psicossociais da Doença , Inquéritos e Questionários , Masculino , FemininoRESUMO
BACKGROUND: While previous research has established that resilience is affected by various factors, these studies have primarily focussed on individual variables associated with resilience, without providing insights into how to influence the rate of change in resilience. AIM: To examine the trajectory of resilience and identify the factors associated with changes in resilience among spousal caregivers of patients with newly diagnosed advanced cancer receiving treatment during the first 6 months. DESIGN: An observational longitudinal study. METHODS: A total of 312 spousal caregivers of patients with newly diagnosed advanced cancer were recruited from January 2022 to December 2022 in Yancheng, China. Three data collection points were established, spanning from the first month to 6 months after initial cancer treatment. A latent growth model was employed to depict the resilience trajectory at various time points. A latent growth model with time-invariant covariates was adopted to determine the factors influencing resilience trajectory. The study adhered to the STROBE checklist for proper reporting. RESULTS: Throughout the follow-up period, the participants experienced a significant increase in resilience. Gender, family income, the patient's health status, spirituality and belief in familism were significantly associated with the baseline resilience level. Moreover, family income, the patient's health status, spirituality, caregiver burden and belief in familism were significantly associated with the rate of resilience change over time. CONCLUSIONS: Spousal caregivers demonstrated a linear increase in resilience during the first 6 months after initial treatment. Meanwhile, changes in resilience were influenced by multiple factors during the early phase of cancer treatment. Thus, more attention should be paid to early identification and implementation of targeted interventions. RELEVANCE TO CLINICAL PRACTICE: Healthcare professionals should understand the change in resilience among spousal caregivers and conduct timely mental health interventions to enhance the resilience of families affected by cancer. PATIENT OR PUBLIC CONTRIBUTION: The Guidance for Reporting Involvement of Patients and the Public-Short Form reporting checklists were used to improve patient and public involvement.
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Cuidadores , Neoplasias , Resiliência Psicológica , Humanos , Neoplasias/enfermagem , Neoplasias/psicologia , Masculino , Feminino , Cuidadores/psicologia , Pessoa de Meia-Idade , Estudos Longitudinais , China , Cônjuges/psicologia , Adulto , Idoso , Adaptação PsicológicaRESUMO
AIMS: To investigate the level of adoption of evidence-based family engagement and support during end-of-life cancer care and subsequent bereavement and its contextual facilitators and barriers from health professionals' perspectives, and to explore differences between professional groups. DESIGN: Contextual analysis using an online cross-sectional survey. METHODS: This study was conducted in four Swiss hospitals and three home care oncology and palliative care services. Non-parametric testing was used to investigate the level of adoption and differences between nurses, physicians, occupational- and physiotherapists and psychosocial professionals (chaplains, onco-psychologists and social workers). The STROBE checklist for cross-sectional studies was followed. RESULTS: The majority of the 111 participating health professionals were nurses. Adoption was statistically significantly higher during end-of-life care than bereavement, with nurses and physicians reporting higher levels than the other professional groups. Guidance on end-of-life family care was available in about half of the cases, in contrast to a quarter for bereavement care. Self-perceived knowledge, skills and attitudes were moderate to high, with nurses and physicians reporting higher levels than others, except for general skills in working with families. Organisational structures were experienced as rather supportive, with the psychosocial group appraising the organisational context as significantly less conducive to fully implementing end-of-life and bereavement care than others, particularly during the end-of-life phase. CONCLUSION: Evidence-based family engagement and support were better adopted during end-of-life care than bereavement. Overall, nurses and physicians felt better enabled to care for families compared to other professional groups. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution. PROTOCOL REGISTRATION: https://osf.io/j4kfh. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: Implementation and quality improvement efforts should focus particularly on the bereavement phase and be tailored to professional groups. IMPACT: The findings show that evidence-based family engagement and support practices during end-of-life were rather well adopted in contrast to subsequent bereavement care, with nurses and physicians better enabled than other professionals to provide care. A better understanding of health professionals' contributions and roles in family care is important to build interprofessional capacity for evidence-based end-of-life and bereavement support. REPORTING METHOD: The STROBE checklist for reports of cross-sectional studies was followed (von Elm et al., 2007).
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Luto , Neoplasias , Assistência Terminal , Humanos , Estudos Transversais , Assistência Terminal/psicologia , Feminino , Masculino , Adulto , Neoplasias/enfermagem , Neoplasias/psicologia , Neoplasias/terapia , Pessoa de Meia-Idade , Pessoal de Saúde/psicologia , Família/psicologia , Inquéritos e Questionários , Suíça , Atitude do Pessoal de Saúde , Prática Clínica Baseada em EvidênciasRESUMO
OBJECTIVE: To determining level and factors affecting Family Centered Care (FCC) in pediatric oncology unit of Tikur Anbessa Specialized hospital (TASH), Ethiopia. METHOD: A cross sectional study was conducted from June to December 2022. Three hundred ninety-three parents of children with cancer were consecutively interviewed using Measure of Processes of Care (MPOC-20). Multivariable linear regression was used to identify independent predictors of FCC. RESULT: The total MPOC 20 means was 3.71(SD = 1.04). The mean score for respectful and supportive care, coordinated and comprehensive care, enabling and partnership, providing specific information and providing general information were found to be 4.8, 4.6, 3.7, 2.3 and 2.6, respectively. Family employment (-0.33(95% CI = -0.63, -0.03; P = .029)), low family education (-0.40 (95% CI = -0.70, -0.11; P = .008)), referral cases (-0.37(95% CI = -0.59, -0.14; P = .001)), shorter time spent in hospital (-0.49(95% CI = -0.85, -0.12; P = .010)) and psychological distress (-0.01(95% CI = -0.026, -0.001; P = .028)) were associated with lower mean score of FCC. CONCLUSION: The total FCC mean score was found to be low. From the five FCC components providing general and specific information scored the lowest mean level. PRACTICE IMPLICATIONS: Mechanism to improve information delivery that address parents from different background and referred from other health facility should be in place in order to improve FCC level. In addition, the FCC should be designed to address parents of children with different lengths of stay.
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Neoplasias , Pais , Humanos , Etiópia , Masculino , Feminino , Estudos Transversais , Criança , Neoplasias/terapia , Neoplasias/psicologia , Neoplasias/enfermagem , Pais/psicologia , Adulto , Centros de Atenção Terciária , Assistência Centrada no Paciente , Pré-EscolarRESUMO
INTRODUCTION: Treatment for patients with cancer in the emergency department ranges from treating life-threatening emergencies to symptom management or issues unrelated to their cancer, but for which cancer and its treatment may be complicating factors. Nurses are expected to manage the care of this population and be aware of risk factors for complications that may be unique to cancer patients. To date, education for emergency nurses regarding oncologic emergencies and the care for patients with cancer has been limited. METHODS: We conducted a cross-sectional needs assessment to establish emergency nurses' educational needs (knowledge, skills, and attitudes) related to the care of patients with cancer and to evaluate if there are different educational needs for emergency nurses associated with the care of the cancer patient by practice setting type. RESULTS: Of 237 nurses surveyed, only 28% of nurse respondents indicated receiving any cancer-specific education or training. Overall, scores on a knowledge assessment were relatively low (mean 53%; range 9.5-85.7%; SD 13%). Nurses reported variable confidence and skills, with the weakest areas being in the triage of complications and oncologic emergencies, assessment of complications related to cancer treatment, and end-of-life conversations. Nearly all of the respondents (97%) indicated a need for oncologic education for emergency nurses with moderate-high priority in relation to other educational needs. DISCUSSION: Our findings suggest that emergency nurses need a stronger foundation of the knowledge and skills required to care for patients with cancer. Results from this study can inform future curriculum development efforts.
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Competência Clínica , Enfermagem em Emergência , Avaliação das Necessidades , Neoplasias , Enfermagem Oncológica , Humanos , Enfermagem em Emergência/educação , Estudos Transversais , Feminino , Enfermagem Oncológica/educação , Masculino , Neoplasias/enfermagem , Adulto , Pessoa de Meia-Idade , Conhecimentos, Atitudes e Prática em Saúde , Inquéritos e Questionários , Serviço Hospitalar de Emergência , Recursos Humanos de Enfermagem Hospitalar/educaçãoRESUMO
BACKGROUND: Cancer patients experience many symptoms. Nurse-led remote telephone triage can improve their quality of life by contributing to the management of these symptoms. AIMS: This study aimed to investigate the effects of nurse-led remote telephone triage on symptom management of patients with cancer. METHODS: The searches were conducted in 10 databases and gray literature from May 2023 to July 2023 without any year limitations. A fixed-effects model was used in the meta-analysis. Cochran's Q chi-squared test and I2 statistics were used for heterogeneity. The PRISMA checklist was used. Data obtained from the included studies were analyzed using CMA 3 software. RESULTS: Six relevant studies (1671 patients) were included. Nurse-led remote telephone triage was found to have a positive and moderate effect on parameters such as pain (Hedge's g = 0.21, p < .001), fatigue (Hedge's g = 0.28, p < .001), and depression (Hedge's g = 0.24, p < .001) in patients with cancer. Also, the remote telephone triage had a positive and low effect on outcomes such as anxiety (Hedge's g = 0.17, p = .001), nausea (Hedge's g = 0.17, p = .004), and vomiting (Hedge's g = 0.16, p = .007) but did not affect diarrhea results. LINKING EVIDENCE TO ACTION: This study showed that nurse-led remote telephone triage considerably improved the symptoms of patients with cancer. This study will increase oncology nurses' awareness that nurse-led remote telephone triage of patients with cancer can improve their symptoms. Remote symptom triage developed using evidence-based guidelines and protocols can significantly contribute to the regular follow-up of patients' symptoms, providing quality care, and establishing appropriate symptom management programs and systems with high levels of evidence.
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Neoplasias , Telefone , Triagem , Humanos , Triagem/métodos , Neoplasias/enfermagem , Neoplasias/complicaçõesRESUMO
Receiving a diagnosis of cancer and receiving treatment can be physically and psychologically onerous for cancer patients. Alongside their nursing skills, cancer clinical nurse specialists (CCNSs) are trained to provide psychological support, assessment and intervention following a cancer diagnosis. Mental health specialists, usually clinical psychologists, provide clinical supervision to CCNSs to support them with this. One of the regular themes that comes up in clinical supervision with CCNSs is how to maintain a supportive and therapeutic relationship with 'challenging' patients. These patients may be considered challenging because they are inconsistent, demanding or ambivalent about their care, which puts a strain on the relationship with their CCNS. By using the emotional seesaw model to reflect on and attend to the emotional boundaries of the relationship, within clinical supervision, these challenging relationships can be understood and managed, and better outcomes for the patient can be achieved.
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Neoplasias , Enfermeiros Clínicos , Relações Enfermeiro-Paciente , Humanos , Neoplasias/enfermagem , Neoplasias/psicologia , Enfermeiros Clínicos/psicologia , Emoções , Enfermagem Oncológica , Modelos de EnfermagemRESUMO
BACKGROUND: Young people receiving cancer treatment in the South Thames Children's, Teenagers' and Young Adults' Cancer Operational Delivery Network usually receive care across two or more NHS trusts, meaning transition into adult services can be challenging. AIM: To develop a planned, co-ordinated approach to transition across the network that meets National Institute for Health and Care Excellence guidance recommendations for transition and the cancer service specifications. METHODS: A 2-year, nurse-led quality improvement (QI) project, using the principles of experience-based co-design. OUTCOMES: The QI project resulted in the development of six key principles of practice; refining and testing of a benchmarking tool; initiatives to facilitate first transition conversations; and the launch of an information hub. CONCLUSION: Robust QI processes, cross-network collaboration and wide stakeholder involvement required significant resource, but enabled deeper understanding of existing pathways and processes, facilitated the establishment of meaningful objectives, and enabled the testing of interventions to ensure the project outcomes met the needs of all stakeholders.
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Neoplasias , Melhoria de Qualidade , Medicina Estatal , Transição para Assistência do Adulto , Humanos , Adolescente , Neoplasias/terapia , Neoplasias/enfermagem , Adulto Jovem , Transição para Assistência do Adulto/organização & administração , Transição para Assistência do Adulto/normas , Medicina Estatal/organização & administração , Reino UnidoRESUMO
PURPOSE: To identify oncology caregivers' unmet educational needs for the development of a virtual reality experience. METHODS: A qualitative descriptive methodology was used; data were collected via online surveys. RESULTS: Eighteen participants said their educational experiences were overwhelming and emotionally exhausting. They suggested a need to deliver educational information through different modalities and provide more clinician-based resources and support. CONCLUSION: This study identified opportunities to complement traditional pretreatment education tailored to the caregivers' needs and experiences, such as specific procedural information and emotional management while being a caregiver. Creating virtual reality experiences exclusively for oncology caregivers is a novel nurse-led approach that is currently not in existence.
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Cuidadores , Emoções , Neoplasias , Pesquisa Qualitativa , Realidade Virtual , Humanos , Cuidadores/educação , Cuidadores/psicologia , Feminino , Masculino , Pessoa de Meia-Idade , Neoplasias/enfermagem , Neoplasias/psicologia , Adulto , Inquéritos e Questionários , Avaliação das Necessidades , IdosoRESUMO
Chat-based cancer counseling in Switzerland: A reflexive thematic analysis of chat protocols focused on cancer survivors' needs Abstract: Background: The number of people diagnosed with cancer and continue to live as cancer survivors is growing. Together with their relatives, they have information and counseling needs during the illness trajectory. With Cancerline, the Swiss Cancer League offers a chat-based counseling service for cancer survivors. Research question/objective: For the first time, the qualitative study investigated which needs cancer survivors express in Cancerline to gain insights for the further development and quality assurance of chat-based cancer counseling. Methods: Based on the principles of Interpretive Description, 669 chat counseling transcripts were analyzed using Braun et al. (2018) reflexive thematic analysis in an iterative process in six analysis steps. Results: Cancer survivorship needs in Cancerline are multifaceted, and we have identified nine themes: need anonymous chat to communicate, get informed, weigh ethical dilemmas and make decisions, seek meaning and hope, find ways to manage burdensome emotions, resolve social conflict and not burden others, feel understood and give space to own needs, clarify role as significant other acting correctly and seeking security. Conclusions: Chat-based counseling may contribute to supporting cancer survivors with information needs about cancer in a flexible way that is close to everyday life. Professionals can sensitize survivors to chat-based counseling, which makes low-threshold counseling accessible.
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Sobreviventes de Câncer , Humanos , Sobreviventes de Câncer/psicologia , Suíça , Feminino , Masculino , Aconselhamento , Neoplasias/psicologia , Neoplasias/enfermagem , Pessoa de Meia-Idade , Pesquisa Qualitativa , Necessidades e Demandas de Serviços de Saúde , Idoso , Adulto , Comunicação , Linhas DiretasRESUMO
Answer questions and earn CME/CNE Comorbidity is common among cancer patients and, with an aging population, is becoming more so. Comorbidity potentially affects the development, stage at diagnosis, treatment, and outcomes of people with cancer. Despite the intimate relationship between comorbidity and cancer, there is limited consensus on how to record, interpret, or manage comorbidity in the context of cancer, with the result that patients who have comorbidity are less likely to receive treatment with curative intent. Evidence in this area is lacking because of the frequent exclusion of patients with comorbidity from randomized controlled trials. There is evidence that some patients with comorbidity have potentially curative treatment unnecessarily modified, compromising optimal care. Patients with comorbidity have poorer survival, poorer quality of life, and higher health care costs. Strategies to address these issues include improving the evidence base for patients with comorbidity, further development of clinical tools to assist decision making, improved integration and coordination of care, and skill development for clinicians. CA Cancer J Clin 2016;66:337-350. © 2016 American Cancer Society.
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Envelhecimento , Neoplasias/enfermagem , Qualidade de Vida , American Cancer Society , Comorbidade , Educação Continuada em Enfermagem , Humanos , Neoplasias/economia , Neoplasias/epidemiologia , Neoplasias/terapia , Prevalência , Fatores de Risco , Taxa de Sobrevida , Estados Unidos/epidemiologiaRESUMO
Clinical nurses need learning programs that are useful in nursing support for patients' decision-making (NSPDM) regarding cancer clinical trials (CCTs). The usefulness of the learning program can be evaluated if the practices of NSPDM before and after participation in the learning program can be compared. We developed a scale to measure the level of self-assessed NSPDM regarding participation in a CCT. Thirty-two items of scale were developed in Japanese based on previous literature. Based on the results of a pilot study, items with similar meanings were removed and the validity of the 26 scale items was statistically examined in terms of construct validity and reliability. The study population was clinical nurses and included clinical research nurses. We received 102 valid responses from clinical nurses. Based on the bias of the boxplot distribution and the ceiling and floor effects for the items analysis of the 26-item draft scale, 17 items remained. Exploratory factor analysis (EFA) revealed that the scale consisted of three subscales and 17 items. Regarding fit indices of the model, the goodness-of-fit index (GFI), adjusted GFI (AGFI), comparative fit index (CFI), and root mean square error of application (RMSEA) were 0.775, 0.704, 0.477, and 0.081, respectively. The Cronbach's alpha coefficient for the overall scale was 0.951, with subscales ranging from 0.820 to 0.942. The validity and reliability of this scale were acceptable. This scale may be helpful to evaluate the usefulness of learning programs, i.e., the practice level of NSPDM.
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Tomada de Decisões , Neoplasias , Humanos , Neoplasias/enfermagem , Projetos Piloto , Psicometria , Reprodutibilidade dos Testes , Inquéritos e Questionários , Ensaios Clínicos como Assunto , JapãoRESUMO
AIM: The aim of this study was to explore the experiences of oncology nurses about self-compassion and compassionate care. BACKGROUND: The concept of self-care is emphasized in detail in the literature, and not much is known about the concept of self-compassion among nurses. Beyond the definitions of self-compassion and compassion in the literature, there is a need to explore and express the meaning of self-compassion and compassion in the context of oncology nursing. METHODS: This is a descriptive qualitative study. Semistructured interviews were conducted with 19 oncology nurses working in the oncology service of a university hospital. Interviews were analyzed using thematic analysis through an inductive approach. Consolidated criteria for reporting qualitative studies (COREQ) were used to ensure the comprehensive reporting of this qualitative study protocol. RESULTS: Two themes emerged: (1) compassion through the eyes of oncology nurses and barriers to compassionate care fall under the theme of wounded healers, and (2) self-compassion through the eyes of oncology nurses, barriers to self-compassion, and self-care as a dimension of self-compassion fall under the theme of caring for our suffering: self-compassion. CONCLUSIONS: Although nurses think that self-compassion is important, they do not show self-compassion. There are personal and organizational barriers to compassionate care and self-compassion for oncology nurses. IMPLICATIONS FOR NURSING POLICY: These findings show that oncology nurses need personal and organizational resources for their self-compassion. The existence of programs to develop self-compassion can offset the effects of being in a caregiving position. Oncology nurses must request these services from organization, managers and even policymakers. The existence of policies that also consider the mental health of nurses can pave the way for compassionate care.
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Neoplasias , Enfermeiros Clínicos , Autocompaixão , Humanos , Empatia , Enfermeiros Clínicos/psicologia , Pesquisa Qualitativa , Autocuidado , Neoplasias/enfermagem , Relações Enfermeiro-PacienteRESUMO
BACKGROUND: The objective of this study was to describe young adult cancer caregivers' exposure to cancer misinformation on social media. METHODS: Eligible participants were 18 to 39 years old, used social media weekly, and cared for an adult patient with cancer diagnosed 6 months to 5 years before (N = 21). Recruitment occurred from August 2017 to June 2018 in person at oncology clinics and online. Semistructured telephone interviews were recorded and analyzed with grounded theory methods through 2 rounds of coding (κ = 0.88). RESULTS: Caregivers were on average 29.1 years old, female (76.2%), non-Hispanic White (90.5%), college educated (57.1%), and caring for a spouse/partner (47.6%). Caregivers were exposed to a variety of cancer misinformation topics; some felt uncertain in their caregiving ability when confronted with cancer misinformation. Caregivers crosschecked online sources and consulted trusted individuals (eg, family, friends, and health care providers) to determine the quality of cancer-related information and manage cancer misinformation. CONCLUSIONS: Cancer misinformation on social media may influence caregiving behaviors and decision making. Whether caregivers correctly and consistently identify cancer misinformation on social media is unknown. Supporting digital literacy to mitigate cancer misinformation on social media may improve young cancer caregivers' access to credible cancer information. LAY SUMMARY: Cancer misinformation on social media affects young adult cancer caregivers' perceptions of their social support network. Caregivers differ in how they evaluate cancer information for quality and in how this information influences their health behaviors and caregiving decisions.
Assuntos
Cuidadores , Informação de Saúde ao Consumidor/normas , Neoplasias/enfermagem , Mídias Sociais/normas , Cônjuges , Adulto , Tomada de Decisões , Feminino , Humanos , Masculino , Telefone , Confiança , Adulto JovemRESUMO
BACKGROUND: With increasing cancer incidence and decreasing cancer mortality, there is a growing need for a valid and culturally adapted tool to measure health-related quality of life in children with cancer. This study validated the DISABKIDS Chronic Generic Module (DCGM-37) in Chinese children and adolescents with cancer. METHODS: The DCGM-37 was translated and adapted for use in China following the guidelines from its copyright holders. In total, 140 children and adolescents with cancer and their guardians were included in this cross-sectional study. Internal consistency and test-retest reliability were evaluated. Convergent validity was examined using Pearson correlation between the DCGM-37 and the PedsQL 4.0 Generic Core Scale. Dimensionality was clarified using exploratory factor analysis. Discriminant validity was evaluated by comparing DCGM-37 scores by sex, age, family income, and clinical characteristics. RESULTS: Internal consistency (Cronbach's alpha 0.91) and test-retest reliability were good (intraclass correlation coefficient 0.87, 95% confidence interval 0.73-0.94). Strong correlations between the DCGM-37 and the PedsQL 4.0 (r = 0.83) suggest good convergent validity. Six factors explained 51.94% of the total variance. Children with leukemia scored higher than those with sarcoma in all subscales (effect size ranged from 0.39 to 0.83), especially the "social exclusion" subscales (effect size 0.83). Small to moderate differences (effect size ranged from 0.38 to 0.58) were observed by sex, age, and family income. Neither floor nor ceiling effects were observed. CONCLUSION: The DCGM-37 is reliable and valid for measuring health-related quality of life in Chinese children and adolescents with cancer.
Assuntos
Neoplasias/psicologia , Pacientes/psicologia , Psicologia do Adolescente , Psicologia da Criança , Qualidade de Vida , Inquéritos e Questionários , Atividades Cotidianas , Adolescente , Criança , China/epidemiologia , Estudos Transversais , Emoções , Feminino , Humanos , Masculino , Neoplasias/epidemiologia , Neoplasias/enfermagem , Pais/psicologia , Procurador , Psicometria , Reprodutibilidade dos Testes , Estudos Retrospectivos , Autorrelato , Comportamento Social , Fatores SocioeconômicosRESUMO
PURPOSE: We sought to assess the impact of disruptions due to coronavirus disease 2019 (COVID-19) on caregivers of childhood cancer survivors. METHODS: A 13-question survey containing multiple-choice, Likert-type, and free-text questions on experiences, behaviors, and attitudes during the COVID-19 outbreak was sent to childhood cancer caregivers and completed between April 13 and May 17, 2020. Ordered logistic regression was used to investigate relationships between demographics, COVID-related experiences, and caregiver well-being. RESULTS: Caregivers from 321 unique families completed the survey, including 175 with children under active surveillance/follow-up care and 146 with children no longer receiving oncology care. Overall, caregivers expressed exceptional resiliency, highlighting commonalities between caring for a child with cancer and adopting COVID-19 prophylactic measures. However, respondents reported delayed/canceled appointments (50%) and delayed/canceled imaging (19%). Eleven percent of caregivers reported struggling to pay for basic needs, which was associated with greater disruption to daily life, greater feelings of anxiety, poorer sleep, and less access to social support (p < .05). Caregivers who were self-isolating reported greater feelings of anxiety and poorer sleep (p < .05). Respondents who expressed confidence in the government response to COVID-19 reported less disruption to their daily life, decreased feelings of depression and anxiety, better sleep, and greater hopefulness (p < .001) CONCLUSIONS: Caregivers are experiencing changes to medical care, financial disruptions, and emotional distress due to COVID-19. To better serve caregivers and medically at-risk children, clinicians must evaluate financial toxicity and feelings of isolation in families affected by childhood cancer, and work to provide reliable information on how COVID-19 may differentially impact their children.
Assuntos
COVID-19/psicologia , Sobreviventes de Câncer/psicologia , Cuidadores/psicologia , Neoplasias/psicologia , Apoio Social , Adaptação Psicológica , Adulto , Ansiedade/psicologia , Criança , Feminino , Humanos , Masculino , Neoplasias/enfermagem , Relações Pais-Filho , Pais/psicologia , Estresse Psicológico/psicologiaRESUMO
PURPOSE: Personalised information and support can be provided to cancer survivors using a structured approach. Needs assessment tools such as the Holistic Needs Assessment (HNA) in the UK and the Comprehensive Problem and Symptom Screening (COMPASS) questionnaire in Canada are recommended for use in practice; however, they are not widely embedded into practice. The study aimed to determine the extent to which nurses working in cancer care in the UK and Manitoba value NA and identify any barriers and facilitators they experience. METHOD: Oncology nurses involved in the care of cancer patients in the UK (n = 110) and Manitoba (n = 221) were emailed a link to an online survey by lead cancer nurses in the participating institutions. A snowball technique was used to increase participation across the UK resulting in 306 oncology nurses completing the survey in the UK and 116 in Canada. RESULTS: Participants expressed concerns that these assessments were becoming bureaucratic "tick-box exercises" which did not meet patients' needs. Barriers to completion were time, staff shortages, lack of confidence, privacy, and resources. Facilitators were privacy for confidential discussions, training, confidence in knowledge and skills, and referral to resources. CONCLUSION: Many busy oncology nurses completed this survey demonstrating the importance they attach to HNAs and COMPASS. The challenges faced with implementing these assessments into everyday practice require training, time, support services, and an appropriate environment. It is vital that the HNA and COMPASS are conducted at optimum times for patients to fully utilise time and resources.