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1.
Nurse Educ ; 2024 Jun 12.
Artigo em Inglês | MEDLINE | ID: mdl-38876139

RESUMO

BACKGROUND: Escape room simulations are an innovative teaching methodology that may be useful in addressing pediatric-specific content and clinical placement limitations of generalist nursing programs. PROBLEM: This project studied if a pediatric escape room simulation improved students' knowledge and confidence in pediatric nursing to support the development of the pediatric nursing workforce. APPROACH: A pediatric escape room simulation was developed for a large Midwestern university's prelicensure nursing program. Students completed surveys to assess knowledge and confidence in pediatric nursing. Simulation quality was assessed using the Simulation Learning Effectiveness Inventory. OUTCOMES: Students' (N = 37) knowledge and confidence in pediatric nursing concepts significantly increased after the simulation. Students responded positively to the simulation and recommended it be included in the undergraduate curriculum. CONCLUSIONS: The pediatric escape room simulation offers a promising alternative for students to gain pediatric-specific knowledge and confidence for prelicensure nursing programs in the context of limited pediatric clinical placements.

2.
Am J Health Promot ; : 8901171241246316, 2024 Apr 09.
Artigo em Inglês | MEDLINE | ID: mdl-38595044

RESUMO

PURPOSE: The purpose of this study was to evaluate the effectiveness of the WISE (Women in the South-East) Telehealth Network. DESIGN: A follow-up survey design was used to determine the impact of the program on access to healthcare. SETTING: WISE provided preventive care to women and gender expansive people at local libraries and the Mobile Library in the rural South Carolina Lowcountry. SUBJECTS: In 1 year (February 2021-2022), WISE reached 523 individuals with 151 agreeing to participate in the study. Most participants identified as white (66%) or Black (22%). INTERVENTION: A Community Health Worker provided health education, connection to telehealth services, referrals, and connected individuals with community and social services. MEASURES: The Telehealth Usability Questionnaire (TUQ), changes in knowledge, satisfaction with WISE, Acceptability of Intervention measure (AIM), and sociodemographic characteristics. RESULTS: Participants with a high telehealth usability score were significantly more likely to be under the age of 35 (OR 4.60 [95% CI 1.21-17.52]), married (OR 10.00 [95% CI 2.19-45.64]), or white (OR 4.00 [95% CI 1.06-15.08]). The intervention earned a high acceptability score 4.46 (± .61)/5.0 by helping participants obtain necessary medical care and resources, as well as meeting their educational needs. CONCLUSION: This study offers practical suggestions to expand the use of telehealth initiatives to improve health outcomes by engaging libraries in rural communities.

3.
J Pediatr Hematol Oncol Nurs ; 41(3): 157-171, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38588659

RESUMO

Background: Few studies have examined biomarkers of stress and inflammation as underlying mechanisms of symptoms in adolescents and young adults with cancer. This study determined the feasibility of collecting blood and saliva samples across time, described the range and distribution of biomarkers, and explored the association of biomarkers with symptom adverse events (AEs). Method: This longitudinal, prospective repeated-measures single-site feasibility study recruited N = 10 children (M = 12.5 years) receiving treatment for advanced cancer. Symptom AE data and inflammation (cytokines and C-reactive protein) and physiologic response to stress (salivary cortisol and salivary alpha-amylase) biomarker levels were collected at three time points. Descriptive statistics were used to examine feasibility and acceptability and to summarize symptom AE, stress, and inflammatory biomarker data. A linear regression model was used to determine cortisol diurnal slopes. The relationship between symptom and inflammatory biomarker data was explored and Hedges's g statistic was used to determine its effect size. Results: Participants provided 83% of saliva samples (n = 199/240) and 185 samples were sufficient to be analyzed. Nurses collected 97% (n = 29/30) of blood samples. Participants reported the saliva collection instructions, kits, and reminders were clear and helpful. Insomnia, pain, fatigue, and anxiety demonstrated the most medium and large negative effects with inflammatory markers. Symptom AEs demonstrated the highest number of medium and large negative effects with interleukin-8 and tumor necrosis factor-alpha (-0.53 to -2.00). Discussion: The results indicate longitudinal concurrent collection of symptom and biomarker data is feasible and inflammatory and stress biomarkers merit consideration for inclusion in future studies.


Assuntos
Biomarcadores , Estudos de Viabilidade , Inflamação , Neoplasias , Saliva , Estresse Psicológico , Humanos , Criança , Estudos Longitudinais , Inflamação/metabolismo , Masculino , Feminino , Adolescente , Saliva/química , Saliva/metabolismo , Estresse Psicológico/metabolismo , Estresse Psicológico/sangue , Biomarcadores/sangue , Biomarcadores/análise , Estudos Prospectivos , Hidrocortisona/sangue , Hidrocortisona/análise
4.
Cancer Nurs ; 2024 Mar 06.
Artigo em Inglês | MEDLINE | ID: mdl-38447041

RESUMO

BACKGROUND: Children with cancer and other serious illnesses experience symptom burden during hematopoietic stem cell transplantation and chimeric antigen receptor T-cell therapy, yet limited research has characterized how these symptoms interact with overall quality of life over time. OBJECTIVE: The aim of this study was to examine the longitudinal relationship between symptoms and quality of life in children receiving hematopoietic stem cell transplantation or chimeric antigen receptor T-cell therapy. METHODS: A multisite study design was used to collect symptom and quality of life information at pre-cell infusion and days +30, +60, and +90 from children (N = 140) receiving hematopoietic stem cell transplantation and chimeric antigen receptor T-cell therapy. A longitudinal parallel process model was used to characterize the relationship between symptoms and quality of life. RESULTS: Children (mean age, 8.4 years) received allogeneic transplant (57.9%), autologous transplant (25.7%), or chimeric antigen receptor T-cell therapy (16.4%). Symptom prevalence was highest at baseline (>50%) for pain, fatigue, nausea, vomiting, and low appetite. Quality of life scores were worse at baseline (mean [SD], 69.5 [15.8]) and improved by 10 points by day +90. The longitudinal model indicated high symptom prevalence at baseline predicted worse quality of life at both baseline and day +90. CONCLUSIONS: Children felt worse early in the treatment trajectory and improved by day +90. The level of symptom burden predicted the overall quality of life at all time points. IMPLICATIONS FOR PRACTICE: Children experiencing high symptom burden should receive frequent assessment and enhanced symptom management throughout the treatment trajectory to mitigate negative impacts on quality of life.

5.
J Adolesc Young Adult Oncol ; 13(1): 123-131, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-37581596

RESUMO

Purpose: Over 87,000 adolescents and young adults (AYAs) are diagnosed with cancer in the United States each year. Improvement in outcomes in the AYA population has lagged that of both younger and older patients. This decrement may be attributable to several factors, including insufficient supportive care services. Our team modified the Needs Assessment & Service Bridge (NA-SB) tool, utilizing an iterative approach with patient and clinician stakeholders to meet the needs of the AYA population at a large Midwestern Cancer Center. Methods: We recruited a 10-member AYA Advisory Board (AB) from our Cancer Center patients, and met five times over 9 months to discuss supportive care and the NA-SB. We recruited a multidisciplinary group of oncology clinicians to assess content validity and conducted interviews with nine clinician stakeholders to discuss implementation. Results: The AB generated a 59-item-modified NA-SB, retaining most of the original NA-SB items and adding several more. Five items with concerns for relevance and/or clarity were revised to create the final 58-item-modified NA-SB. Priorities for implementation were identified by AB and clinician stakeholders. Conclusions: The modified NA-SB thoroughly reflects supportive care needs of our Midwestern AYA cancer survivors. When implemented, the tool may facilitate patient-care team communication and provide data to prioritize development of new supportive care resources. AYA cancer survivors have unique supportive care needs that are insufficiently addressed by current care models; using the modified NA-SB may help address those needs, leading to improved AYA outcomes.


Assuntos
Sobreviventes de Câncer , Neoplasias , Humanos , Adolescente , Adulto Jovem , Avaliação das Necessidades , Inquéritos e Questionários , Neoplasias/epidemiologia , Oncologia
7.
J Pediatr Hematol Oncol Nurs ; 41(1): 5-15, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-37697734

RESUMO

Background: The presence of poorly controlled symptoms negatively impacts the quality of life (QoL) throughout cancer treatment. The purpose of this multisite study was to explore the relationship between QoL and symptom adverse events (AEs) in children with advanced cancer over 6 months. Method: A prospective and longitudinal descriptive study design was used to collect QoL and symptom AE data from children aged 2 to 18 with advanced cancer. QoL was measured using the Pediatric Quality of Life Inventory (PedsQLTM) Cancer Module 3.0 and symptom AEs were measured using the Pediatric Patient-Reported Outcome-Common Terminology Criteria for AEs (PRO-CTCAEs®). Descriptive statistics were used to describe QoL and symptom AE data. Correlational analyses and generalized linear mixed models were used to examine the relationship between symptom AEs and QoL. Results: Forty-nine children participated in the study. The mean total PedsQLTM score was 73.86 for the sample across all time points. Children diagnosed with a central nervous system (CNS) tumor reported poorer QoL compared to children diagnosed with a hematologic malignancy or non-CNS solid tumor. Symptom frequency AEs of anxiety, pain, nausea, insomnia, hot flashes, and fatigue severity demonstrated the strongest and most significant negative correlation with total QoL scores. Analyses of the relationship between QoL and symptom AEs over time revealed time-specific significant differences with children who experienced frequency AEs of nausea, and anxiety reporting poorer QoL at time point 4 (week 8). Discussion: The Ped PRO-CTCAE® and PedsQLTM can be used to evaluate the relationship between symptom AEs and QoL in practice and in future research.


Assuntos
Neoplasias , Qualidade de Vida , Humanos , Criança , Estudos Longitudinais , Estudos Prospectivos , Neoplasias/complicações , Medidas de Resultados Relatados pelo Paciente , Náusea/etiologia
8.
ANS Adv Nurs Sci ; 46(2): E44-E65, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-36044347

RESUMO

This integrative review was conducted to determine the current state of science in understanding the process of awakening the spiritual self/identity among adolescents with cancer. Twenty-six studies were included in the data synthesis. Six major themes were identified: recounting rough spots of the cancer experience, the spiritual self/identity, nurturing the spiritual self/identity, affirming values and beliefs, abiding resilience and transcendence, and portraying the cancer experience. Findings offer increased understanding of the process of awakening the spiritual self/identity among adolescents with cancer that can guide spiritual nursing practice and inform future research including the development of spiritual care interventions.


Assuntos
Neoplasias , Humanos , Adolescente , Espiritualidade
9.
Pediatrics ; 2022 Sep 07.
Artigo em Inglês | MEDLINE | ID: mdl-36069137

RESUMO

Pediatric palliative care, including end-of-life care, remains a relatively new area of interdisciplinary clinical practice and research. Improving the multifaceted and complex care of children and their families involves research that (1) documents the experiences of children with serious illness, their families, and clinicians; (2) evaluates relationships between contextual factors and health outcomes; and (3) establishes a stronger foundation for child- and family-focused interventions to improve care. Partnership among stakeholders in family-focused research begins from design through conduct of the study. This partnership is the foundation of a dynamic research process that illuminates critical perspectives. We present a hypothetical pediatric palliative study; a qualitative descriptive study of the perspectives of adolescents and young adults with life-limiting illnesses and their parents after a discussion about an end-of-life decision. Pediatric palliative care researchers, institutional review board leaders, and the parent of a child who died comment on how to balance the obligations to improve clinical care and to protect participants in research. Their recommendations include recruiting a wide range of participants, differentiating emotional responses from harm, approaching potential participants as individuals, and seeking feedback from family advisory boards and designated reviewers with content expertise.

10.
J Bioeth Inq ; 19(1): 37-48, 2022 03.
Artigo em Inglês | MEDLINE | ID: mdl-35362922

RESUMO

Narrative analysis is well established as a means of examining the subjective experience of those who suffer chronic illness and cancer. In a study of perceptions of the outcomes of treatment of cancer of the colon, we have been struck by the consistency with which patients record three particular observations of their subjective experience: (1) the immediate impact of the cancer diagnosis and a persisting identification as a cancer patient, regardless of the time since treatment and of the presence or absence of persistent or recurrent disease; (2) a state of variable alienation from social familiars, expressed as an inability to communicate the nature of the experience of the illness, its diagnosis and treatment; and (3) a persistent sense of boundedness, an awareness of limits to space, empowerment and available time. These subjectivities were experienced in varying degree by all patients in our study. Individual responses to these experiences were complex and variable. The experiences are best understood under the rubric of a category we call "liminality". We believe that all cancer patients enter and experience liminality as a process which begins with the first manifestations of their malignancy. An initial acute phase of liminality is marked by disorientation, a sense of loss and of loss of control, and a sense of uncertainty. An adaptive, enduring phase of suspended liminality supervenes, in which each patient constructs and reconstructs meaning for their experience by means of narrative. This phase persists, probably for the rest of the cancer patient's life. The experience of liminality is firmly grounded in the changing and experiencing body that houses both the disease and the self. Insights into the nature of the experience can be gained from the Existentialist philosophers and from the history of attitudes to death. Understanding liminality helps us to understand what it is that patients with cancer (and other serious illnesses) seek from the system to which they turn for help. Its explication should therefore be important for those who provide health care, those who educate health care workers and those concerned to study and use outcomes as administrative and policy making instruments.


Assuntos
Neoplasias , Humanos , Narração , Incerteza
11.
J Bioeth Inq ; 19(1): 85-96, 2022 03.
Artigo em Inglês | MEDLINE | ID: mdl-35362926

RESUMO

High-dose chemotherapy and autologous stem cell transplantation (ASCT) is used to treat some advanced malignancies. It is a traumatic procedure, with a high complication rate and significant mortality. ASCT patients and their carers draw on many sources of information as they seek to understand the procedure and its consequences. Some seek information from beyond orthodox medicine. Alternative beliefs and practices may conflict with conventional understanding of the theory and practice of ASCT, and 'contested understandings' might interfere with patient adherence to the strict and demanding protocols required for successful ASCT.The present study, conducted in Sydney, Australia, examines narrative-style interviews with 10 sequentially recruited ASCT patients and nine of their carers conducted at the time of transplant and three months later. Transcripts were read for instances of mention of alternative advice, and for instances of contested understanding of information relevant to the transplant.Patients and carer pairs expressed closely concordant views about alternative advice. Five pairs were consulting alternative practitioners. Contested understanding was expressed in four domains-understandings of the transplant itself and its underlying theory, of the relationship between the components of the 'transplant', of the nature and role of stem cells, and of beliefs about bodily function and life-style. Contested understandings of the transplant treatment were expressed as predominantly personal interpretations of orthodox informationPatients and carers seemed to recognise that alternative and conventional systems were discordant, yet they were able to separate the two, and adhere to each practice without prejudicing their medical treatment. A single case of late, post-transplant repudiation of Western medicine is discussed to emphasise some of the possible determinants of dissonance when it does occur.


Assuntos
Transplante de Células-Tronco Hematopoéticas , Protocolos de Quimioterapia Combinada Antineoplásica/uso terapêutico , Austrália , Diversidade Cultural , Humanos , Transplante Autólogo
12.
J Bioeth Inq ; 19(1): 129-134, 2022 03.
Artigo em Inglês | MEDLINE | ID: mdl-34859360

RESUMO

In their 2018 article in the Cambridge Quarterly of Healthcare Ethics, Little, Lipworth, and Kerridge unpack the concept of corruption and clarify the mechanisms that foster corruption and allow it to persist, noting that organizations are "corruptogenic." To address the "so-what" question, I draw on research about trust and trustworthiness, emphasizing that a person's well-being and sense of security require trust to be present at both the individual and organizational levels-which is not possible in an environment where corruption and misconduct prevail. I highlight similarities in Little et al.'s framing of corruption to the persistent problem of scientific misconduct in research and publishing. I acknowledge the challenges in stemming corruption in science and medicine and conclude with a discussion about the need to reinvigorate a web of stakeholders to actively engage in professional regulation.


Assuntos
Má Conduta Científica , Confiança , Humanos , Organizações , Editoração
13.
West J Nurs Res ; 44(7): 662-674, 2022 07.
Artigo em Inglês | MEDLINE | ID: mdl-33926320

RESUMO

In the scope of symptom cluster research, few investigators have obtained patients' perceptions of their symptom clusters, even though this information is central to designing effective interventions. In this cross-sectional study, 38 adults with cancer completed measures of demographics, health outcomes (functional status, well-being, quality of life) and a symptom cluster assessment that captured symptom occurrence, severity, distress, clustering, a priority cluster, causal attributions, duration, directional relationships, and cluster interference with daily life. Participants described 72 distinct symptom clusters. Symptoms were most frequently attributed to the cancer diagnosis. Participants' priority symptom cluster typically included two symptoms of continuous duration and one intermittent symptom. Temporal order and direction of symptom relationships varied, with 75 different relationships described among symptom pairs. Greater symptom cluster burden and interference were related to poorer health outcomes. This patient-centered view of symptom clusters revealed substantial variability in symptom cluster characteristics with important implications for symptom management.


Assuntos
Neoplasias , Qualidade de Vida , Adulto , Estudos Transversais , Humanos , Neoplasias/complicações , Assistência Centrada no Paciente , Síndrome
14.
Int J Surg Pathol ; 30(1): 6-14, 2022 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-34180731

RESUMO

Objectives. To compare the clinicopathologic characteristics of urothelial carcinoma (UC), urothelial carcinoma with squamous differentiation (UCSD), and squamous cell carcinoma (SCC) of the bladder, which have been suggested to differ in terms of risk factors, immunophenotype, and prognosis. Methods. We evaluated the clinicopathologic features of radical cystectomy specimens between 1980 and 2015 with a diagnosis of SCC, UCSD, and UC. PD-L1 immunohistochemistry (clinically available clones 22C3, SP142, and SP263) was performed on SCC and UCSD. Multivariate Cox regression was used to identify prognostic factors. Kaplan-Meier curves were plotted to assess cancer-specific survival (CSS). Results. Of the 1478 cases, there were 1126 UC (76%), 217 UCSD (15%), and 135 SCC (9%). Bladder cancer was more common in men than women (80% vs 20%, P < .0001). However, a higher proportion of SCC and UCSD occurred in women (SCC-36%, UCSD-22%, UC-18%). Women were significantly more likely to be never smokers in all 3 cohorts (UC: 45% vs 16%, UCSD: 44% vs 12%, SCC: 40% vs 18%, P < .0001). Patients with SCC and UCSD were at a higher pathologic stage (>pT2) at the time of cystectomy (UCSD-74%, SCC 71%, UC-44%, P < .0001) and had worse CSS compared to patients with UC (P = 0.006). SCC had higher PD-L1 scores (all clones) than UCSD (P < .0001). PD-L1 22C3 (P = .02, HR: 0.36) and SP142 scores (P = .046, HR: 0.27) predicted CSS on Kaplan-Meier analysis for SCC cases. Conclusions. UC, UCSD, and SCC are associated with different risk factors, gender distributions, and clinical outcomes. PD-L1 is expressed in SCC and UCSD, suggesting some patients may benefit from targeted therapy.


Assuntos
Antígeno B7-H1/metabolismo , Biomarcadores Tumorais/metabolismo , Carcinoma de Células Escamosas/patologia , Carcinoma de Células de Transição/patologia , Neoplasias da Bexiga Urinária/patologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Carcinoma de Células Escamosas/metabolismo , Carcinoma de Células Escamosas/mortalidade , Carcinoma de Células Escamosas/cirurgia , Carcinoma de Células de Transição/metabolismo , Carcinoma de Células de Transição/mortalidade , Carcinoma de Células de Transição/cirurgia , Estudos de Casos e Controles , Cistectomia , Feminino , Seguimentos , Humanos , Masculino , Pessoa de Meia-Idade , Prognóstico , Estudos Retrospectivos , Análise de Sobrevida , Neoplasias da Bexiga Urinária/metabolismo , Neoplasias da Bexiga Urinária/mortalidade , Neoplasias da Bexiga Urinária/cirurgia
15.
Nurs Outlook ; 69(6): 1030-1038, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-34625275

RESUMO

BACKGROUND: Advanced practice nurses (APNs) are well-positioned to function in research settings, however barriers to their engagement persist. Capacity-building through multisite research opportunities is an important strategy to overcome these barriers. PURPOSE: To describe the benefits and challenges of incorporating APNs in research and discuss opportunities for building capacity for nursing research. METHOD: Grounded in the experience of a nurse-led multisite longitudinal observational descriptive symptom study, field notes representing the research continuum were reviewed and categorized into themes reflecting benefits and challenges. FINDINGS: Uniform benefits of acquiring research knowledge and skills, participating in research activities, and engaging in professional development were experienced among APNs. Limited support for regulatory and research activities, inadequate financial infrastructure, and a perceived lack of value for APNs' professional growth were commonly encountered challenges. DISCUSSION: Establishment of an infrastructure that elevates benefits and mitigates challenges is necessary to effectively incorporate APNs in a research environment, build capacity, and advance nursing science.


Assuntos
Fortalecimento Institucional , Mentores , Profissionais de Enfermagem , Pesquisa em Enfermagem , Prática Avançada de Enfermagem , Humanos , Estudos Longitudinais , Alocação de Recursos
16.
Cancer Nurs ; 44(6): E520-E530, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-33813530

RESUMO

BACKGROUND: Discharge education practices vary among institutions and lack a standardized approach for newly diagnosed pediatric oncology patients and their parents. OBJECTIVE: The purpose of this American Nurses Credentialing Center-supported pediatric multisite trial was to determine the feasibility and effectiveness of 2 nurse-led Parent Education Discharge Support Strategies (PEDSS) for families with a child who is newly diagnosed with cancer. INTERVENTIONS/METHODS: A cluster randomized clinical trial design assigned 16 Magnet-designated sites to a symptom management PEDSS intervention or parent support and coping PEDSS intervention. Outcome measures evaluated at baseline, 1, and 2 months after diagnosis include symptom experiences, parent perceptions of care, unplanned service utilization, and parent evaluation of the PEDSS interventions. RESULTS: There were 283 newly diagnosed children and their parent participating in this study. Linear mixed models revealed pain differed over time by the intervention; children in the symptom management group had a greater decrease in pain. Greater nausea and appetite disturbances were experienced by older children in both groups. Fatigue and sleep disturbance showed a significant decrease over time in both groups. The symptom management group reported significantly greater satisfaction with the PEDSS intervention. CONCLUSIONS: This study is among the first to examine the effects of 2 different early-discharge planning strategies for families of a newly diagnosed child with cancer. The evidence supports a standardized discharge education strategy that can be successfully implemented across institutions. IMPLICATIONS FOR PRACTICE: Nurses play a major role in the educational preparation and discharge of newly diagnosed pediatric cancer patients and their families.


Assuntos
Neoplasias , Alta do Paciente , Adaptação Psicológica , Adolescente , Criança , Humanos , Oncologia , Neoplasias/terapia , Pais
17.
J Spec Pediatr Nurs ; 26(3): e12316, 2021 07.
Artigo em Inglês | MEDLINE | ID: mdl-33118275

RESUMO

PURPOSE: This report represents a subanalysis of data from a primary study and addresses a gap in understanding the similarities and differences of symptom reporting between children with advanced cancer and their parents. The objectives of this subanalysis were to (1) compare reports of symptom prevalence, symptom burden, and symptom frequency, severity, and distress between groups of children and adolescents and their parents, and (2) describe concordance of symptom reports within individual child-parent dyads. DESIGN AND METHODS: Forty-six children with relapsed, refractory, or progressive cancer and their parents from five pediatric cancer centers prospectively reported symptoms every 2 weeks for up to 61 weeks. The abbreviated Pediatric Quality of Life and Evaluation of Symptoms Technology-Memorial Symptom Assessment Scales were used to measure symptom prevalence, frequency, severity, and distress. RESULTS: Children and parents reported pain, fatigue, nausea, and sleeping difficulties as the most frequently occurring symptoms. With the exception of shortness of breath, parents reported symptom prevalence more often than children. The differences in parent reports were statistically significant for fatigue, nausea, lack of appetite, feeling nervous, and sadness. Parents reported higher symptom burden scores compared to children for all individual symptoms except shortness of breath. Children reported higher scores for 19 of 32 possible symptom frequency, severity, and distress ratings. Children's scores were higher for frequency and severity, while parents' scores were higher for distress. Sleeping difficulties, pain, nausea, and diarrhea demonstrated the highest concordance, while feeling nervous, sadness, irritability, and fatigue yielded the lowest concordance between children's and parents' symptom reports. PRACTICE IMPLICATIONS: Eliciting the symptom experience from the child, when appropriate, rather than a parent proxy is best practice given evidence supporting the overestimation of symptom prevalence by parents and underestimation of symptom frequency and severity for some symptoms. When proxy raters must be used, pediatric nurses should educate proxy raters regarding symptom assessment, and assess and tend to symptoms that may not exhibit visual cues. Pediatric nurses should conduct a comprehensive symptom assessment and evaluate beyond the presence of symptoms and include an assessment of frequency, severity, and distress for physical and psychological symptoms to optimize symptom management strategies.


Assuntos
Neoplasias , Qualidade de Vida , Adolescente , Criança , Fadiga/epidemiologia , Humanos , Autorrelato , Avaliação de Sintomas
18.
Intern Med J ; 50(11): 1333-1338, 2020 11.
Artigo em Inglês | MEDLINE | ID: mdl-33215835

RESUMO

Over the course of the twentieth century, numerous national and international ethics 'codes' have been developed. While such codes serve important substantive and symbolic functions, they can also pose challenges. In this article, we discuss these challenges, noting that they fall into four main categories relating to conceptual tensions, power imbalances, organisational barriers, and threats of exploitation. We illustrate these challenges using examples provided from the United Nations Educational Scientific and Cultural Organization (UNESCO) Universal Declaration on Bioethics and Human Rights. We emphasise the importance of accountability in the development and maintenance of national and international codes and argue that, despite all their challenges, codes provide an important common language among otherwise disparate and sometimes adversarial groups, and provide visible and explicit sets of standards that may be invoked by community members to criticise and hold powerful bodies to account. This is particularly important for practitioners and researchers who belong to organisations that are signatories to codes, who can use these codes to both guide and justify ethical behaviour in the face of competing organisational, professional and political imperatives.


Assuntos
Bioética , Setor de Assistência à Saúde , Direitos Humanos , Humanos , Cooperação Internacional , Nações Unidas
19.
Oncol Nurs Forum ; 47(5): 498-511, 2020 09 01.
Artigo em Inglês | MEDLINE | ID: mdl-32830800

RESUMO

PROBLEM IDENTIFICATION: Patients with cancer experience multiple symptoms, but current practice is driven by guidelines that address single symptoms. Identifying symptom management strategies recommended across two or more symptoms could relieve multiple symptoms and reduce patient burden. LITERATURE SEARCH: The Oncology Nursing Society, National Comprehensive Cancer Network, and American Society of Clinical Oncology websites were searched to identify management guidelines for 15 symptoms. DATA EVALUATION: The authors extracted symptom management strategies and recommendations. Recommendations were synthesized by symptom across the guidelines, and recommended strategies were compared across symptoms. SYNTHESIS: Among 32 guidelines reviewed, a total of 88 symptom management strategies (41 pharmacologic, 47 nonpharmacologic) were recommended across two or more symptoms. IMPLICATIONS FOR PRACTICE: Findings support the potential for coordinated selection of symptom management strategies that cross over multiple symptoms in a patient. Investigators should test these symptom management strategies in the context of co-occurring symptoms and develop guidelines that address multiple symptoms.


Assuntos
Neoplasias , Cuidados Paliativos , Humanos , Neoplasias/terapia , Enfermagem Oncológica
20.
J Pediatr Oncol Nurs ; 37(4): 255-264, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-32536321

RESUMO

Background/Purpose: Effective symptom assessment and management for children with advanced cancer undergoing hematopoietic stem cell transplantation (HSCT) is critical to minimize suffering. The purpose of this subanalysis was to compare feasibility of electronic data collection data and symptom prevalence, frequency, severity, and distress from children with advanced cancer undergoing HSCT with a non-HSCT cohort. Method: An abbreviated Pediatric Quality of Life and Evaluation of Symptoms Technology Memorial Symptom Assessment Scale was electronically administered every 2 weeks to children with advanced cancer. A subanalysis was conducted for the cohort of children who received autologous or allogeneic HSCT. Results: Forty-six participants completed 563 symptom assessments during the study. However, 11 of these 46 children received HSCT and completed 201 symptom assessments. The median age in the HSCT cohort was 12.7 years, 73% were female, and most children had a hematologic (45%) or solid tumor (45%) malignancy. Pain (35%), nausea (30%), sleeping difficulty (29%), and fatigue (22%) were the most commonly reported symptoms in children receiving HSCT. Children in the HSCT cohort had similar total, subscale, and individual symptom scores compared with children who did not receive HSCT. Certain domains of gastrointestinal symptoms (nausea, lack of appetite, and diarrhea) were higher for children receiving HSCT compared with children with advanced cancer not receiving HSCT (p < .05). Conclusion: Elicitation of patient-reported symptom experiences using electronic methods improves nurses' understanding of the symptom experience for children with advanced cancer undergoing HSCT and may promote timely assessment and treatment of distressing symptoms.


Assuntos
Transplante de Células-Tronco Hematopoéticas/psicologia , Neoplasias/psicologia , Neoplasias/terapia , Qualidade de Vida/psicologia , Adaptação Psicológica , Adolescente , Criança , Fadiga/etiologia , Feminino , Transplante de Células-Tronco Hematopoéticas/métodos , Humanos , Masculino , Náusea/etiologia , Neoplasias/complicações , Dor/etiologia , Avaliação de Sintomas/métodos
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