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OBJECTIVE: Characterize key factors and training needs of U.S. cancer centers in implementing family caregiver support services. METHODS: Sequential explanatory mixed methods design consisting of: (1) a national survey of clinicians and administrators from Commission-on-Cancer-accredited cancer centers (N = 238) on factors and training needed for establishing new caregiver programs and (2) qualitative interviews with a subsample of survey respondents (N = 30) to elicit feedback on survey findings and the outline of an implementation strategy to facilitate implementation of evidence-based family caregiver support (the Caregiver Support Accelerator). Survey data was tabulated using descriptive statistics and transcribed interviews were analyzed using thematic analysis. RESULTS: Top factors for developing new caregiver programs were that the program be: consistent with the cancer center's mission and strategic plan (87%), supported by clinic leadership (86.5%) and providers and staff (85.7%), and low cost or cost effective (84.9%). Top training needs were how to: train staff to implement programs (72.3%), obtain program materials (63.0%), and evaluate program outcomes (62.6%). Only 3.8% reported that no training was needed. Qualitative interviews yielded four main themes: (1) gaining leadership, clinician, and staff buy-in and support is essential; (2) cost and clinician burden are major factors to program implementation; (3) training should help with adapting and marketing programs to local context and culture; and (4) the Accelerator strategy is comprehensive and would benefit from key organizational partnerships and policy standards. CONCLUSION: Findings will be used to inform and refine the Accelerator implementation strategy to facilitate the adoption and growth of evidence-based cancer caregiver support in U.S. cancer centers.
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Cuidadores , Neoplasias , Humanos , Serviços de Saúde , Neoplasias/terapia , Instituições de Assistência AmbulatorialRESUMO
This article contains a review of literature published from 2010 to 2016 on family caregiving in oncology. An analysis of 810 citations resulted in 50 randomized trials. These trials describe the need to prepare family caregivers for the complex role they play in cancer care. Several studies have demonstrated improved quality of life for family caregivers and improved emotional support from interventions. Several studies addressed communication and relational intimacy, which are key concerns. An additional focus of these trials was in the area of caregiving tasks and ways to diminish the burden of caregiving and preparedness for this role. Further research is needed in this area given the shift to outpatient care and as family caregivers become the primary providers of care. Future research should include expanding tested models of family caregiver support in clinical practice and in diverse populations. CA Cancer J Clin 2017. © 2017 American Cancer Society. CA Cancer J Clin 2017;67:318-325. © 2017 American Cancer Society.
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Cuidadores/educação , Cuidadores/psicologia , Neoplasias/psicologia , Apoio Social , Adaptação Psicológica , Humanos , Qualidade de Vida , Ensaios Clínicos Controlados Aleatórios como Assunto , Projetos de PesquisaRESUMO
PURPOSE: To understand multidisciplinary healthcare clinicians' meaningful and challenging experiences providing spiritual care to patients with cancer and their care partners. METHODS: Multidisciplinary clinicians who participated in a communication training program supported by the National Cancer Institute or a palliative care training for nurses (N = 257) responded to two, open-ended questions about meaningful and challenging experiences of providing spiritual care. A thematic analysis of responses using an iterative, inductive approach was conducted until saturation was reached. RESULTS: Participants from nursing (68%), social work (22%), and chaplaincy (10%) responded to open-ended survey questions. Three themes related to meaningful experiences of providing spiritual care emerged: building authentic interpersonal connection with patients and care partners; creating intentional space for patients and care partners to inform spiritual care; and actively supporting patients and care partners in their processes with spirituality. Three themes related to challenging experiences of providing spiritual care emerged: contextual factors and clinical circumstances complicate provision of spiritual care; facing barriers to providing high-quality, patient-centered care; and navigating ethical and logistical issues that affect spiritual and other care. CONCLUSION: Clinicians derive meaning from a range of experiences throughout their provision of spiritual care to patients with cancer. However, they also face many challenges in delivering person-centered spiritual care in cancer settings, with some challenges reflecting significant gaps in spiritual care knowledge and training. Findings can guide future training and educational endeavors for multidisciplinary clinicians in the domain of spiritual care.
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Neoplasias , Espiritualidade , Humanos , Neoplasias/psicologia , Neoplasias/terapia , Masculino , Feminino , Inquéritos e Questionários , Pessoa de Meia-Idade , Adulto , Atitude do Pessoal de Saúde , Assistência Centrada no Paciente , Cuidadores/psicologia , Cuidados Paliativos/métodos , Cuidados Paliativos/psicologia , Oncologia/métodos , Pessoal de Saúde/psicologiaRESUMO
AIM: To explore (1) perspectives and attitudes of Native Americans regarding transitions from serious illness to death, and (2) awareness about hospice and palliative care service models in a Great Plains reservation-based community. DESIGN: Qualitative descriptive study. METHODS: Community members and clinicians were invited to participate in a semi-structured focus group or interview by Tribal Advisory Board members. Analysis involved three phases: (1) qualitative descriptive analysis of preliminary themes using the Addressing Palliative Care Disparities conceptual model; (2) a cultural review of the data; and (3) reflexive thematic analysis to synthesize findings. RESULTS: Twenty-six participants engaged in two focus groups (n = 5-6 participants in each) and interviews (n = 15). Four themes were derived from their stories: (1) family connectedness is always priority; (2) end-of-life support is a community-wide effort; (3) everyone must grieve in their own way to heal; and (4) support needs from outside the community. CONCLUSION: Findings highlight cultural considerations spanning the life course. Clinicians, researchers and traditional wisdom keepers and practitioners, particularly those working in rural and/or reservation-based settings, must provide culturally safe care. This must include acknowledging and prioritizing the needs and preferences of Native American patients and the impact on their families and communities. IMPACT AND IMPLICATIONS FOR THE PROFESSION: Leveraging community assets, such as family and social networks, is key for supporting Native American patients with serious illnesses. Additionally, facilitating greater family and caregiver involvement along a patient's care trajectory may be a pathway for easing health care workers' caseloads in reservation-based areas, where resources are limited. REPORTING METHOD: The Consolidated Criteria for Reporting Qualitative Research (COREQ) guideline was used. PATIENT/PUBLIC CONTRIBUTION: The study was ideated based on community insight. Tribal Advisory Board members oversaw all aspects including recruitment, data acquisition, interpretation of findings and tribal data dissemination.
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OBJECTIVE: Lesbian, gay, bisexual, transgender, and queer or questioning (LGBTQ+) persons with serious illness and their families often experience end-of-life (EOL) care disparities, such as homophobia and transphobia, disrespect and mistreatment, and exclusion of significant others or life partners. The aim of the study was to explore interdisciplinary clinicians' communication knowledge and priorities using a case of a gay man at EOL and his same-sex, cisgender spouse. METHODS: Interdisciplinary clinicians (n = 150) who participated in a national 3-day communication training program, rooted in Adult Learning Theory and supported by the National Cancer Institute, responded to open-ended questions about a composite case study emphasizing diversity challenges relevant to LGBTQ + communities in the EOL context. A thematic analysis of responses using an iterative, inductive approach was conducted until saturation was reached. RESULTS: Participants from nursing (48%), social work (35%) and chaplaincy (17%) responded to the survey. Five themes emerged: 1) provision of patient-centered care; 2) legal and ethical factors inform care and decision making; 3) considerations of same-sex spouse or couple context; 4) dynamics and role of family of origin; and 5) elements of inclusive clinical care. CONCLUSIONS: LGBTQ + inclusive communication training is essential for all palliative clinicians to deliver culturally safe care. Our findings have implications for identifying unconscious bias, addressing discriminatory care, filling clinician knowledge gaps, and informing educational interventions to support LGBTQ + inclusion. Future research must focus on micro- and macro-level communication issues that shape the quality of palliative and EOL care for patients and chosen family members.
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Homossexualidade Feminina , Minorias Sexuais e de Gênero , Pessoas Transgênero , Masculino , Adulto , Feminino , Humanos , Comportamento Sexual , Bissexualidade , MorteRESUMO
Nurses are the largest group of health and social care professionals globally and they are central to the provision of palliative care.
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Assistência Terminal , Humanos , Cuidados Paliativos , Apoio Social , MorteRESUMO
BACKGROUND: Approximately 5% of cancer patients in the United States presented with metastatic bone disease (MBD) at diagnosis. Current study explores the disparities in survival for patients with MBD. METHODS: Patients with the diagnosis of MBD at presentation for the five most common primary anatomical sites were extracted from Surveillance, Epidemiology, and End Results Census tract-level dataset (2010-2016). Kaplan-Meier and Cox Proportional Hazard models were used to evaluate survival, and prognostic factors for each cohort. Prognostic significance of socioeconomic status (SES) and insurance status were ascertained. RESULTS: The five most common anatomical-sites with MBD at presentation included "lung" (n = 59 739), "prostate" (n = 19 732), "breast" (n = 16 244), "renal and urothelium" (n = 7718) and "colon" (n= 3068). Lower SES was an independent risk factor for worse disease-specific survival (DSS) for patients with MBD originating from lung, prostate, breast and colon. Lack of insurance was an independent risk factor for worse DSS for MBD patients with primary tumors in lung and breast. CONCLUSIONS: MBD patients from the five most common primary sites demonstrated SES and insurance-related disparities in disease-specific survival. This is the first and largest study to explore SES and insurance-related disparities among patients specifically afflicted with MBD. Our findings highlight vulnerability of patients with MBD across multiple primary sites to financial toxicity.
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Doenças Ósseas , Neoplasias , Humanos , Estados Unidos/epidemiologia , Classe Social , Cobertura do Seguro , Prognóstico , Fatores SocioeconômicosRESUMO
PURPOSE: The global incidence of cancer and available cancer-directed therapy options is increasing rapidly, presenting patients and clinicians with more complex treatment decisions than ever before. Despite the dissemination of evidence-based communication training tools and programs, clinicians cite barriers to employing effective communication in cancer care (e.g., discomfort of sharing serious news, concern about resource constraints to meet stated needs). We present two composite cases with significant communication challenges to guide clinicians through an application of evidence-based approaches to achieve quality communication. METHODS: Composite cases, communication skills blueprint, and visual conceptualization. RESULTS: High-stakes circumstances in each case are described, including end-of-life planning, advanced pediatric illness, strong emotions, and health inequities. Three overarching communication approaches are discussed: (1) content selection and delivery; (2) rapport development; and (3) empathic connection. The key takeaways following each case provide succinct summaries of challenges encountered and approaches used. A communication blueprint from the Memorial Sloan Kettering Cancer Center Communication Skills Training Program and Research Laboratory has been adapted and is comprised of strategies, skills, process tasks, and sample talking points. A visually concise tool - the Communication Blueprint Traffic Circle - illustrates these concepts and demonstrates the iterative, holistic, and agile considerations inherent to effective communication. CONCLUSION: Evidence-based communication is foundational to person-centeredness, associated with improved clinician and patient/caregiver outcomes, and can be integrated throughout routine oncology care. When used by clinicians, evidence-based communication can improve patient and caregiver experiences and assist in ensuring goal-concordant cancer care delivery.
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Comunicação , Neoplasias , Humanos , Criança , Formação de Conceito , Morte , Emoções , Empatia , Neoplasias/terapiaRESUMO
For a number of decades, nurses have raised concerns about nursing-related issues in nursing homes (NH) such as inadequate registered nurse (RN) staffing, insufficient RN and advanced practice registered nurse (APRN) gerontological expertise, and lack of RN leadership competencies. The NASEM Committee on the Quality of Care in Nursing Homes illuminated the long-standing issues and concerns affecting the quality of care in nursing homes and proposed seven goals and associated recommendations intended to achieve the Committee's vision: Nursing home residents receive care in a safe environment that honors their values and preferences, addresses goals of care, promotes equity, and assesses the benefits and risks of care and treatments. This paper outlines concrete and specific actions nurses and nursing organizations can take to ensure the recommendations are implemented.
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Geriatria , Enfermeiras e Enfermeiros , Humanos , Casas de Saúde , Recursos Humanos , Qualidade da Assistência à SaúdeRESUMO
BACKGROUND: The severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) (COVID-19) pandemic and associated restrictions have altered the delivery of surgical care. The purpose of this study was to explore the impact of COVID-19 on care delivery and quality of life (QOL) from the perspectives of lung cancer surgery patients, family caregivers (FCGs), and thoracic surgery teams. METHODS: Patients/FCGs enrolled in a randomized trial of a self-management intervention for lung cancer surgery preparation/recovery were invited to participate in this qualitative study. Patients/FCGs data were collected separately 1-month postdischarge. Interviews were also conducted with thoracic surgery team members. Content analysis approaches were used to develop themes. RESULTS: Forty-one respondents including 19 patients, 18 FCGs, three thoracic surgeons, and one nurse practitioner participated in the study. Patient themes included isolation, psychological distress, delayed/impacted care, and financial impact. FCGs themes included caregiving challenges, worry about COVID-19, financial hardship, isolation, and physical activity limitations. Surgical team themes included witnessing patient/FCG's distress, challenges with telehealth, communication/educational challenges, and delays in treatment. CONCLUSIONS: COVID-19 had a varied impact on care delivery and QOL for lung cancer surgery dyads. Some dyads reported minimal impact, while others experienced added psychological distress, isolation, and caregiving challenges. Surgical teams also experienced challenges in the approach used to provide care.
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COVID-19 , Neoplasias Pulmonares , Assistência ao Convalescente , COVID-19/epidemiologia , Humanos , Neoplasias Pulmonares/cirurgia , Pandemias , Alta do Paciente , Qualidade de Vida/psicologiaRESUMO
BACKGROUND: We have analyzed sex, race/ethnicity or socioeconomic disparities in the incidence of metastatic bone disease (MBD). METHODS: Patients with the diagnosis of MBD at presentation for five most common primary anatomical sites was extracted from Surveillance, Epidemiology, and End Results Census tract-level dataset. Mean incidence of MBD for different sex, racial/ethnic and socioeconomic groups were compared. RESULTS: The five most common anatomical sites with MBD at presentation include "lung: (n = 59 739), "prostate" (n = 19 732), "breast" (n = 16 244), "renal" (n = 7718) and "colon" (n = 3068). There was an increase in incidence of MBD among cancers originating from prostate (annual percentage change [APC] 4.94), renal (APC 2.55), and colon (APC 3.21) (p < 0.05 for all). Non-Hispanic Blacks had higher incidence of MBD for prostate and breast primary sites (p < 0.001). Non-Hispanic American Indian Alaskan Native had higher incidence of MBD for cancers originating from renal (p < 0.001) and colon (p = 0.049). A higher incidence of MBD was seen in lower socioeconomic status (SES) groups for the selected sites (p < 0.001). CONCLUSIONS: These findings suggest that there are multiple sex-related, racial/ethnic and SES disparities in the incidence of MBD from the 5 most common primary sites. Higher incidence seen among lower SES suggests delay in diagnosis and limited access to screening modalities.
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Neoplasias Ósseas/epidemiologia , Etnicidade/estatística & dados numéricos , Disparidades nos Níveis de Saúde , Disparidades em Assistência à Saúde , Grupos Raciais/estatística & dados numéricos , Classe Social , Fatores Socioeconômicos , Neoplasias Ósseas/economia , Neoplasias Ósseas/secundário , Seguimentos , Humanos , Incidência , Prognóstico , Fatores Sexuais , Estados Unidos/epidemiologiaRESUMO
Importance: Despite growing evidence, the role of spirituality in serious illness and health has not been systematically assessed. Objective: To review evidence concerning spirituality in serious illness and health and to identify implications for patient care and health outcomes. Evidence Review: Searches of PubMed, PsycINFO, and Web of Science identified articles with evidence addressing spirituality in serious illness or health, published January 2000 to April 2022. Independent reviewers screened, summarized, and graded articles that met eligibility criteria. Eligible serious illness studies included 100 or more participants; were prospective cohort studies, cross-sectional descriptive studies, meta-analyses, or randomized clinical trials; and included validated spirituality measures. Eligible health outcome studies prospectively examined associations with spirituality as cohort studies, case-control studies, or meta-analyses with samples of at least 1000 or were randomized trials with samples of at least 100 and used validated spirituality measures. Applying Cochrane criteria, studies were graded as having low, moderate, serious, or critical risk of bias, and studies with serious and critical risk of bias were excluded. Multidisciplinary Delphi panels consisting of clinicians, public health personnel, researchers, health systems leaders, and medical ethicists qualitatively synthesized and assessed the evidence and offered implications for health care. Evidence-synthesis statements and implications were derived from panelists' qualitative input; panelists rated the former on a 9-point scale (from "inconclusive" to "strongest evidence") and ranked the latter by order of priority. Findings: Of 8946 articles identified, 371 articles met inclusion criteria for serious illness; of these, 76.9% had low to moderate risk of bias. The Delphi panel review yielded 8 evidence statements supported by evidence categorized as strong and proposed 3 top-ranked implications of this evidence for serious illness: (1) incorporate spiritual care into care for patients with serious illness; (2) incorporate spiritual care education into training of interdisciplinary teams caring for persons with serious illness; and (3) include specialty practitioners of spiritual care in care of patients with serious illness. Of 6485 health outcomes articles, 215 met inclusion criteria; of these, 66.0% had low to moderate risk of bias. The Delphi panel review yielded 8 evidence statements supported by evidence categorized as strong and proposed 3 top-ranked implications of this evidence for health outcomes: (1) incorporate patient-centered and evidence-based approaches regarding associations of spiritual community with improved patient and population health outcomes; (2) increase awareness among health professionals of evidence for protective health associations of spiritual community; and (3) recognize spirituality as a social factor associated with health in research, community assessments, and program implementation. Conclusions and Relevance: This systematic review, analysis, and process, based on highest-quality evidence available and expert consensus, provided suggested implications for addressing spirituality in serious illness and health outcomes as part of person-centered, value-sensitive care.
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Doença , Saúde , Terapias Espirituais , Espiritualidade , Estudos Transversais , Pessoal de Saúde , Humanos , Estudos ProspectivosRESUMO
The purpose of this consensus paper was to convene leaders and scholars from eight Expert Panels of the American Academy of Nursing and provide recommendations to advance nursing's roles and responsibility to ensure universal access to palliative care. On behalf of the Academy, these evidence-based recommendations will guide nurses, policy makers, government representatives, professional associations, and interdisciplinary and community partners to integrate palliative nursing services across health and social care settings. Through improved palliative nursing education, nurse-led research, nurse engagement in policy making, enhanced intersectoral partnerships with nursing, and an increased profile and visibility of palliative care nurses worldwide, nurses can assume leading roles in delivering high-quality palliative care globally, particularly for minoritized, marginalized, and other at-risk populations. Part II herein provides a summary of international responses and policy options that have sought to enhance universal palliative care and palliative nursing access to date. Additionally, we provide ten policy, education, research, and clinical practice recommendations based on the rationale and background information found in Part I. The consensus paper's 43 authors represent eight countries (Australia, Canada, England, Kenya, Lebanon, Liberia, South Africa, United States of America) and extensive international health experience, thus providing a global context for the subject matter.
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Consenso , Prova Pericial , Saúde Global , Acessibilidade aos Serviços de Saúde , Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Cuidados Paliativos/normas , Enfermagem Baseada em Evidências/tendências , Política de Saúde , Acessibilidade aos Serviços de Saúde/normas , Acessibilidade aos Serviços de Saúde/tendências , Humanos , Sociedades de Enfermagem , Participação dos Interessados , Assistência de Saúde UniversalRESUMO
Survivors of lung and colorectal cancer have high post-treatment needs; the majority are older and suffer from greater comorbidities and poor quality of life (QOL). They remain underrepresented in research, leading to significant disparities in post-treatment outcomes. Personalized post-treatment follow-up care and care coordination among healthcare teams is a priority for survivors of lung and colorectal cancer. However, there are few evidence-based interventions that address survivors' post-treatment needs beyond the use of a follow-up care plan. This paper describes the rationale and design of an evidence-informed telehealth intervention that integrates shared care coordination between oncology/primary care and self-management skills building to empower post-treatment survivors of lung and colorectal cancer. The intervention design was informed by (1) contemporary published evidence on cancer survivorship, (2) our previous research in lung and colorectal cancer survivorship, (3) the chronic care self-management model (CCM), and (4) shared post-treatment follow-up care between oncology and primary care. A two-arm, parallel randomized controlled trial will determine the efficacy of the telehealth intervention to improve cancer care delivery and survivor-specific outcomes. ClinicalTrials.gov Identifier: NCT04428905.
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Sobreviventes de Câncer , Neoplasias Colorretais , Autogestão , Telemedicina , Neoplasias Colorretais/terapia , Humanos , Pulmão , Qualidade de Vida , SobreviventesRESUMO
The purpose of this consensus paper was to convene leaders and scholars from eight Expert Panels of the American Academy of Nursing and provide recommendations to advance nursing's roles and responsibility to ensure universal access to palliative care. Part I of this consensus paper herein provides the rationale and background to support the policy, education, research, and clinical practice recommendations put forward in Part II. On behalf of the Academy, the evidence-based recommendations will guide nurses, policy makers, government representatives, professional associations, and interdisciplinary and community partners to integrate palliative nursing services across health and social care settings. The consensus paper's 43 authors represent eight countries (Australia, Canada, England, Kenya, Lebanon, Liberia, South Africa, United States of America) and extensive international health experience, thus providing a global context for the subject matter. The authors recommend greater investments in palliative nursing education and nurse-led research, nurse engagement in policy making, enhanced intersectoral partnerships with nursing, and an increased profile and visibility of palliative nurses worldwide. By enacting these recommendations, nurses working in all settings can assume leading roles in delivering high-quality palliative care globally, particularly for minoritized, marginalized, and other at-risk populations.
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Consenso , Prova Pericial , Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Cuidados Paliativos , Assistência de Saúde Universal , Educação em Enfermagem , Saúde Global , Disparidades em Assistência à Saúde , Humanos , Enfermeiros Administradores , Sociedades de EnfermagemRESUMO
OBJECTIVE: The objective of this training project is to develop and host Interprofessional Communication courses to improve interdisciplinary communication in oncology care. The initial national course was held in a virtual format and included pre- and post-course participant data. The curriculum was developed with support from the National Cancer Institute. METHODS: A virtual two-day course was held to equip nurses, social workers, and chaplains with vital communication skills in oncology practice, so that they could return to their home institutions and teach communication skills to other healthcare professionals, with the intention of making improved communication a quality improvement goal. Fifty-two participants were selected through an application process to attend the virtual course in two-person interprofessional teams (e.g., nurse and chaplain, or social worker and nurse). The Interprofessional Communication Curriculum was based on the National Consensus Project for Quality Palliative Care's eight domains of quality palliative care. The six online modules developed by the investigators were presented in lectures, supplemented by discussion groups, role plays, and other methods of experiential learning. RESULTS: Pre- and post-course results identified areas of communication, which are a priority for improvement by oncology clinicians. Participant goals identified specific strategies to be implemented by participants in their settings. SIGNIFICANCE OF RESULTS: The need for communication training was clearly demonstrated across professions in this national training course. Participants were able to apply course content to their goals for quality improvement in cancer settings.
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Clero , Comunicação , Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Educação Interprofissional , Assistentes Sociais , Humanos , Currículo , Educação Interprofissional/organização & administração , Cuidados Paliativos , Enfermagem de Cuidados Paliativos na Terminalidade da Vida/educação , Assistentes Sociais/educação , Assistentes Sociais/psicologia , Assistentes Sociais/estatística & dados numéricos , Clero/educação , Clero/psicologia , Clero/estatística & dados numéricos , Melhoria de Qualidade , Institutos de Câncer , Estados Unidos , Masculino , FemininoRESUMO
OBJECTIVES: Patients with cancer who are at a transition to Phase I investigational treatments have been identified as an underserved population with regard to palliative care. This disease transition is often accompanied by spiritual and existential concerns. The study objective was to conduct a secondary analysis of data from a larger study testing a palliative care intervention. This paper reports the findings of this secondary focus on the spiritual needs of this population. METHODS: Patients (n = 479) were accrued to this study prior to initiating a Phase I clinical trial with data collected at baseline, and 4, 12, and 24 week follow-up. RESULTS: Qualitative data revealed that the transition to Phase 1 trial participation is a time of balancing hope for extended life with the reality of advancing disease. Quantitative results demonstrated increased spirituality over time in both religious- and non-religious-affiliated patients. CONCLUSIONS: Patients entering Phase I trials have important spiritual needs as they face treatment decisions, advancing disease, and often mortality. Spiritual care should be provided to seriously ill patients as a component of quality care.
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Existencialismo/psicologia , Neoplasias/psicologia , Cuidados Paliativos/psicologia , Qualidade de Vida/psicologia , Espiritualidade , Adaptação Psicológica , Adulto , Feminino , Esperança , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias/terapia , Cuidados Paliativos/métodos , Terapias Espirituais/métodos , Doente Terminal/psicologiaRESUMO
BACKGROUND: Neonatal intensive care unit (NICU) nurses require knowledge and skill to meet the unique needs of infants and families. Increasingly, principles of palliative care are being integrated into the NICU setting to improve the quality of care. PURPOSE: The purpose of this article is to describe the efforts of the End-of-Life Nursing Education Consortium (ELNEC) project and its Pediatric Curriculum, which began in 2003 to provide this education, and to also describe efforts by nurses to implement the training into their practice settings. METHODS: The ELNEC Pediatric Palliative Care (ELNEC-PPC) project is a train-the-trainer educational program and evidence-based curriculum. FINDINGS/RESULTS: Participants attend a course or receive online training and then apply the education to implement improved practices in areas such as symptom management, care at the time of death, and bereavement support for families. IMPLICATIONS FOR RESEARCH: Experiences with ELNEC-PPC have demonstrated that nurses can implement the curriculum to improve care. IMPLICATIONS FOR PRACTICE: Continued attention to palliative care in this setting is needed, and future research is needed to evaluate the outcomes of this education and practice change.
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Educação Continuada em Enfermagem/organização & administração , Enfermagem de Cuidados Paliativos na Terminalidade da Vida/educação , Enfermagem de Cuidados Paliativos na Terminalidade da Vida/organização & administração , Unidades de Terapia Intensiva Neonatal/organização & administração , Recursos Humanos de Enfermagem Hospitalar/educação , Cuidados Paliativos/organização & administração , Assistência Terminal/organização & administração , Adulto , Currículo , Feminino , Humanos , Lactente , Recém-Nascido , Masculino , Pessoa de Meia-Idade , Estados UnidosRESUMO
Family caregivers are centrally involved in cancer pain management, especially for patients with advanced disease. This issue is becoming ever more important as care shifts to the outpatient setting and home care and as the aging population creates more patients who have multiple illnesses and family caregivers who often live with serious illnesses. This narrative review evaluated current knowledge and literature regarding family caregivers' involvement in cancer pain management and identified areas for future research and clinical practice. There is a need for additional research in this area and for clinical models of support for family caregivers as they provide pain management for patients with cancer.
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Dor do Câncer/terapia , Cuidadores , Manejo da Dor/métodos , Família , HumanosRESUMO
The experience of pain in cancer is widely accepted as a major threat to quality of life, and the relief of pain has emerged as a priority in oncology care. Pain is associated with both the disease as well as treatment, and management is essential from the onset of early disease through long-term survivorship or end-of-life care. Effective relief of pain is contingent upon a comprehensive assessment to identify physical, psychological, social, and spiritual aspects and as a foundation for multidisciplinary interventions. Fortunately, advances in pain treatment and in the field of palliative care have provided effective treatments encompassing pharmacological, cognitive-behavioral, and other approaches. The field of palliative care has emphasized that attention to symptoms such as pain is integral to quality cancer care.