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1.
Clin Trials ; : 17407745241238444, 2024 Apr 04.
Artigo em Inglês | MEDLINE | ID: mdl-38576071

RESUMO

BACKGROUND: The Online Resource for Recruitment in Clinical triAls (ORRCA) and the Online Resource for Retention in Clinical triAls (ORRCA2) were established to organise and map the literature addressing participant recruitment and retention within clinical research. The two databases are updated on an ongoing basis using separate but parallel systematic reviews. However, recruitment and retention of research participants is widely acknowledged to be interconnected. While interventions aimed at addressing recruitment challenges can impact retention and vice versa, it is not clear how well they are simultaneously considered within methodological research. This study aims to report the recent update of ORRCA and ORRCA2 with a special emphasis on assessing crossover of the databases and how frequently randomised studies of methodological interventions measure the impact on both recruitment and retention outcomes. METHODS: Two parallel systematic reviews were conducted in line with previously reported methods updating ORRCA (recruitment) and ORRCA2 (retention) with publications from 2018 and 2019. Articles were categorised according to their evidence type (randomised evaluation, non-randomised evaluation, application and observation) and against the recruitment and retention domain frameworks. Articles categorised as randomised evaluations were compared to identify studies appearing in both databases. For randomised studies that were only in one database, domain categories were used to assess whether the methodological intervention was likely to impact on the alternate construct. For example, whether a recruitment intervention might also impact retention. RESULTS: In total, 806 of 17,767 articles screened for the recruitment database and 175 of 18,656 articles screened for the retention database were added as result of the update. Of these, 89 articles were classified as 'randomised evaluation', of which 6 were systematic reviews and 83 were randomised evaluations of methodological interventions. Ten of the randomised studies assessed recruitment and retention and were included in both databases. Of the randomised studies only in the recruitment database, 48/55 (87%) assessed the content or format of participant information which could have an impact on retention. Of the randomised studies only in the retention database, 6/18 (33%) assessed monetary incentives, 4/18 (22%) assessed data collection location and methods and 3/18 (17%) assessed non-monetary incentives, all of which could have an impact on recruitment. CONCLUSION: Only a small proportion of randomised studies of methodological interventions assessed the impact on both recruitment and retention despite having a potential impact on both outcomes. Where possible, an integrated approach analysing both constructs should be the new standard for these types of evaluations to ensure that improvements to recruitment are not at the expense of retention and vice versa.

2.
Artigo em Inglês | MEDLINE | ID: mdl-38626991

RESUMO

BACKGROUND: Performing clinical trials in palliative cancer care is known to be challenging. OBJECTIVE: This study aimed to explore how patients with advanced cancer experienced their participation in a randomised, placebo-controlled trial while receiving palliative cancer care at end of life. METHOD: A descriptive design with a qualitative approach was used. 14 patients who had participated in the 'Palliative-D' study were interviewed. Data were analysed using content analysis. RESULTS: Three categories were identified understanding the study design, willingness to participate and collaboration with the research team alongside standard care. Being randomised, with the risk of receiving placebo, was perceived as non-problematic since it was understood as being important for the quality of the research. Patients showed a willingness to participate for the sake of others and also for their own sake, hoping for a cure or at least to live as long as possible. Patients felt proud of being useful and contributing to research. Consent to participate was made autonomously without discussing with others. Patients considered the study design uncomplicated and well-integrated into the standard care. CONCLUSION: Study participation in a randomised, placebo-controlled trial can be a positive and meaningful experience for patients despite advanced cancer in end of life. Participation may support patients' autonomy and give hope, and therefore, might have a positive effect on quality of life. A carefully planned and simple study design, well integrated into standard care, can facilitate the feasibility of clinical studies in specialised palliative home care.

3.
BMC Med Res Methodol ; 24(1): 65, 2024 Mar 11.
Artigo em Inglês | MEDLINE | ID: mdl-38468223

RESUMO

BACKGROUND: The Core Outcome Measures in Effectiveness Trials (COMET) working group proposed core outcome sets (COS) to address the heterogeneity in outcome measures in clinical studies. According to the recommendations of COMET, performing systematic reviews (SRs) usually was the first step for COS development. However, the SRs that serve as a basis for COS are not specifically appraised by organizations such as COMET regarding their quality. Here, we investigated the status of SRs related to development of COS and evaluated their methodological quality. METHODS: We conducted a search on PubMed to identify SRs related to COS development published from inception to May 2022. We qualitatively summarized the disease included in SR topics, and the studies included in the SRs. We evaluated the methodological quality of the SRs using AMSTAR 2.0 and compared the overall quality of SRs with and without protocols using the Mann-Whitney U test. RESULTS: We included 175 SRs from 23 different countries or regions, and they mainly focused on five diseases: musculoskeletal system or connective tissue disease (n = 19, 10.86%), injury, poisoning, or certain other consequences of external causes (n = 18, 10.29%), digestive system disease (n = 16, 9.14%), nervous system disease (n = 15, 8.57%), and genitourinary system disease (n = 15, 8.57%). Although 88.00% of SRs included randomized controlled trials (RCTs), only a few SRs (23.38%) employed appropriate tools to assess the risk of bias in RCTs. The assessment results on the basis of AMSTAR 2.0 indicated that most SRs (93.71%) were rated as ''critically low'' to ''low'' in terms of overall confidence. The overall confidence of SRs with protocols was significantly higher than that without protocols (P <.001). Compared to the SRs with protocols on Core Outcome Measures in Effectiveness Trials (COMET), SRs with protocols on PROSPERO were of better overall confidence (P = .017). CONCLUSION: The overall quality of published SRs regarding COS development was poor. Our findings emphasize the need for researchers to carefully select the disease topic and strictly adhere to the requirements of optimal methodology when conducting a SR for the establishment of a COS.


Assuntos
Avaliação de Resultados em Cuidados de Saúde , Projetos de Pesquisa , Humanos , Revisões Sistemáticas como Assunto , Viés
4.
Artigo em Inglês | MEDLINE | ID: mdl-38378244

RESUMO

OBJECTIVE: Patients with non-curative malignancy can receive palliative radiotherapy (PR) to alleviate symptoms. However, choosing the right patient to receive PR can be challenging, as some patients may not survive long enough to gain benefit. This study aims to identify prognostic factors for overall survival (OS) and 30-day mortality (30DM) following PR and to test these in a real-world cohort. METHOD: A retrospectively collected data set of all adults completing PR between 1 August 2018 and 31 December 2018 at a single centre (n=214, Southend University Hospital NHS Foundation Trust, UK) was used to test prognostic factors. Factors such as demographics, tumour primary, treatment area, fractionation regime, performance status (PS), progressive disease (PD), opioid or steroid use and haemoglobin level, as well as overall survival, were collected. Cox regression was used to examine survival predictors, and logistic regression was used to determine the predictive strength of factors for 30DM. RESULTS: Overall 30DM was 14%. There was significantly worse survival in patients with poor PS (HR 1.2406, 95% CI 0.94 to 1.64. p=0.01). Patients with PS 3 had a median OS of 75 days and were more likely to experience 30DM (OR 6.2, 95% CI 1.226 to 45.42, p=0.03). Patients with PD outside of the radiation field (46%, 30 out of 65 documented) had significantly worse OS (HR 5.24, 95% CI 2.19 to 12.5, p<0.001). CONCLUSION: Poor PS and PD were prognostic of OS and 30DM. Future work should include validation with a prospectively collected cohort.

5.
Biom J ; 66(1): e2200222, 2024 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-36737675

RESUMO

Although new biostatistical methods are published at a very high rate, many of these developments are not trustworthy enough to be adopted by the scientific community. We propose a framework to think about how a piece of methodological work contributes to the evidence base for a method. Similar to the well-known phases of clinical research in drug development, we propose to define four phases of methodological research. These four phases cover (I) proposing a new methodological idea while providing, for example, logical reasoning or proofs, (II) providing empirical evidence, first in a narrow target setting, then (III) in an extended range of settings and for various outcomes, accompanied by appropriate application examples, and (IV) investigations that establish a method as sufficiently well-understood to know when it is preferred over others and when it is not; that is, its pitfalls. We suggest basic definitions of the four phases to provoke thought and discussion rather than devising an unambiguous classification of studies into phases. Too many methodological developments finish before phase III/IV, but we give two examples with references. Our concept rebalances the emphasis to studies in phases III and IV, that is, carefully planned method comparison studies and studies that explore the empirical properties of existing methods in a wider range of problems.


Assuntos
Bioestatística , Projetos de Pesquisa
6.
BMJ Support Palliat Care ; 14(1): 76-86, 2024 Feb 21.
Artigo em Inglês | MEDLINE | ID: mdl-37611937

RESUMO

OBJECTIVES: Providing high-quality safe palliative care requires high-quality clinically driven research. Little is known about how to optimise clinical research capacity in this field.To understand interest and capacity to conduct clinical research in palliative medicine and identify key facilitators and barriers, by surveying palliative medicine consultants and academic trainees. METHODS: National online survey exploring experience in conducting research, including facilitators and barriers. Sent to all current UK palliative medicine consultants, and previous/current academic trainees. Descriptive statistics are reported with framework analysis of free text responses. RESULTS: 195 surveys were submitted including 15 respondents with Integrated Academic Training (IAT) experience. 78% (n=140/180) of consultants were interested in conducting research. Despite this enthusiasm, 83% had no allocated time within their job plan. 88% of those who undertook IAT would recommend IAT, but 60% reported difficulty transitioning from academic trainee to research active consultant.Barriers to research included; insufficient research culture and integration, with small teams working in a mixture of National Health Service (NHS) and non-NHS settings, leading to isolated, silo working. Even those who had undertaken IAT, felt a 'cliff edge' in opportunities after completing IAT. Filling service gaps was routinely prioritised over research activity. CONCLUSION: Palliative medicine consultants, including those who have completed academic training want to conduct research but overwhelming barriers limit activity. A palliative care-specific strategy that permeates different palliative care settings, promotes interspecialty collaboration and improves the current infrastructure for palliative care research to maximise gains from IAT and embed a research culture are suggested.


Assuntos
Consultores , Medicina Paliativa , Humanos , Medicina Estatal , Cuidados Paliativos , Inquéritos e Questionários , Reino Unido
7.
Biom J ; 66(1): e2200095, 2024 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-36642811

RESUMO

Statistical simulation studies are becoming increasingly popular to demonstrate the performance or superiority of new computational procedures and algorithms. Despite this status quo, previous surveys of the literature have shown that the reporting of statistical simulation studies often lacks relevant information and structure. The latter applies in particular to Bayesian simulation studies, and in this paper the Bayesian simulation study framework (BASIS) is presented as a step towards improving the situation. The BASIS framework provides a structured skeleton for planning, coding, executing, analyzing, and reporting Bayesian simulation studies in biometrical research and computational statistics. It encompasses various features of previous proposals and recommendations in the methodological literature and aims to promote neutral comparison studies in statistical research. Computational aspects covered in the BASIS include algorithmic choices, Markov-chain-Monte-Carlo convergence diagnostics, sensitivity analyses, and Monte Carlo standard error calculations for Bayesian simulation studies. Although the BASIS framework focuses primarily on methodological research, it also provides useful guidance for researchers who rely on the results of Bayesian simulation studies or analyses, as current state-of-the-art guidelines for Bayesian analyses are incorporated into the BASIS.


Assuntos
Algoritmos , Teorema de Bayes , Simulação por Computador , Cadeias de Markov , Método de Monte Carlo
8.
Artigo em Espanhol | LILACS-Express | LILACS | ID: biblio-1535442

RESUMO

Introducción: Es necesario contar con instrumentos válidos y confiables para identificar los factores que influyen en la adherencia al tratamiento en personas con factores de riesgo cardiovascular. En Colombia, Bonilla y Gutiérrez diseñaron un instrumento que cuenta con validez facial y de contenido. Sin embargo, no se ha demostrado la validez de constructo. Objetivo: Determinar la validez de constructo y confiabilidad del instrumento, factores que influyen en la adherencia al tratamiento farmacológico y no farmacológico en personas con factores de riesgo cardiovascular. Metodología: Investigación metodológica. Participaron 694 personas con factores de riesgo de enfermedad cardiovascular residentes en tres ciudades de Colombia (Neiva, Espinal y Tunja). Se realizó un análisis factorial exploratorio (extracción de componentes principales y rotación Varimax), análisis factorial confirmatorio (estimación de máxima verosimilitud) y una prueba de confiabilidad global y por dimensiones (alfa de Cronbach y Test-retest). Resultados: El análisis factorial exploratorio reportó un instrumento de 30 ítems con estructura de 4 factores (varianza total acumulada de 42,6 %). Los índices de ajuste del modelo propuesto indicaron ajuste absoluto excelente y ajuste incremental aceptable. El alfa de Cronbach global fue 0,86, lo que indica alta confiabilidad. Discusión: El estudio proporciona evidencia de un instrumento más robusto que otras versiones. Los instrumentos estandarizados para medir factores que influyen en la adherencia pueden ser muy útiles para la investigación y la práctica si cumplen con pruebas psicométricas de fiabilidad y validez. Conclusión: Se pone a disposición de los investigadores y del personal de salud un instrumento válido y confiable. Se recomienda su uso en poblaciones similares a la de este estudio.


Introduction: It is necessary to have valid and reliable instruments to identify the factors that influence adherence to treatment in people with cardiovascular risk factors. In Colombia, Bonilla y Gutierrez designed an instrument that has face and content validity. However, construct validity has not been demonstrated. Objective: To determine the construct validity and reliability of the instrument, factors that influence adherence to pharmacological and non-pharmacological treatment in people with cardiovascular risk factors. Methodology: Methodological research. A total of 694 people with risk factors for cardiovascular disease residing in three Colombian cities (Neiva, Espinal and Tunja) participated. Exploratory factor analysis (extraction of principal components and Varimax rotation), confirmatory factor analysis (maximum likelihood estimation) and global and dimensional reliability test (Cronbach's alpha and Test-retest) were performed. Results: The exploratory factor analysis reported a 30-item instrument with a 4-factor structure (total cumulative variance of 42.6%). The fit indices of the proposed model indicated excellent absolute fit and acceptable incremental fit. The overall Cronbach's alpha was 0.86, indicating high reliability. Discussion: The study provides evidence of a more robust instrument than other versions. Standardized instruments to measure factors that influence adherence can be very useful for research and practice if they meet psychometric tests of reliability and validity. Conclusion: A valid and reliable instrument is made available to researchers and health personnel. Its use is recommended in populations similar to that of this study.

9.
Int J Nurs Knowl ; 2023 Nov 01.
Artigo em Inglês | MEDLINE | ID: mdl-37910648

RESUMO

PURPOSE: In cross-cultural research, there is a need for standard rules for translating research measurement instruments. This article describes the Reminiscence Functions Scale (RFS) translation process from English into Arabic and the rigorous process followed in translating the scale. The process described can serve as a blueprint for translating research instruments for cross-cultural studies and clinical practice. METHOD: Six integrated steps were used to establish content and semantic equivalences. Six bilingual professional translators participated in the translation project and utilized the Flaherty 3-point scale to assess and rate the translated RFS. FINDINGS: The difficulties encountered during the study were finding nuanced translation equivalences for Likert scale responses, the translation of phrases and idioms, and logistical issues. CONCLUSIONS: Combining translation methods is the ideal choice to achieve robust translation. IMPLICATION FOR NURSING PRACTICE: The proposed translation method for research instruments would assist nurses in appraising prior research's findings, delineating potential effective nursing interventions, and facilitating comparisons of individuals from various cultures and contexts.

10.
Front Res Metr Anal ; 8: 1190362, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-38025959

RESUMO

Meta-analysis is of increasing importance as this quantitative synthesis technique has the potential to summarize a tremendous amount of research evidence, which can help making evidence-based decisions in policy, practice, and theory. This paper examines the single-case meta-analyses within the Education and Psychology fields. The amount of methodological studies related to the meta-analysis of Single-Case Experimental Designs (SCEDs) is increasing rapidly, especially in these fields. This underscores the necessity of a succinct summary to help methodologists identify areas for further development in Education and Psychology research. It also aids applied researchers and research synthesists in discerning when to use meta-analytic techniques for SCED studies based on criteria such as bias, mean squared error, 95% confidence intervals, Type I error rates, and statistical power. Based on the summary of empirical evidence from 18 reports identified through a systematic search procedure, information related to meta-analytic techniques, data generation and analysis models, design conditions, statistical properties, conditions under which the meta-analytic technique is appropriate, and the study purpose(s) were extracted. The results indicate that three-level hierarchical linear modeling is the most empirically validated SCED meta-analytic technique, and parameter bias is the most prominent statistical property investigated. A large number of primary studies (more than 30) and at least 20 measurement occasions per participant are recommended for usage of SCED meta-analysis in Education and Psychology fields.

11.
Artigo em Inglês | MEDLINE | ID: mdl-37696587

RESUMO

OBJECTIVES: Delirium, a neurocognitive disorder, typically occurs in older patients and those with advanced cancer. Although there have been numerous reports on delirium in patients with cancer in various conditions, there are no reports that specifically focus on patients with musculoskeletal tumours. This prospective study aimed to investigate the incidence, risk factors and prognostic implications of delirium in patients with musculoskeletal tumours. METHODS: In this single institutional study, 148 patients with musculoskeletal oncology were enrolled. The estimated risk factors included age, sex, alcohol abuse, performance status (PS), dietary status, admission route, tumour malignancy, oncological stage and blood test results. The significance of delirium in survival was also examined. RESULTS: Only 18 patients with malignant tumours had delirium (12.2%). Based on univariate analysis, older age, poor PS, dietary status, admission from another hospital, malignant tumour, carcinoma rather than sarcoma, anaemia and some laboratory abnormalities were found to be significant risk factors for delirium. Multivariate analysis showed that poor PS was significantly correlated with delirium. Additionally, delirium was significantly correlated with poor survival. CONCLUSIONS: The incidence of delirium among patients with musculoskeletal tumours was 12.2% and was observed only in patients with malignant tumours. PS is a significant risk factor for delirium. Delirium is correlated with poor prognosis.

12.
Artigo em Inglês | MEDLINE | ID: mdl-37491147

RESUMO

OBJECTIVES: End of life has unacceptable levels of hospital admission and death. We aimed to determine the association of a novel digital specific system (Proactive Risk-Based and Data-Driven Assessment of Patients at the End of Life, PRADA) to modify such events. METHODS: A cohort-controlled study of those discharged alive, who died within 90 days of discharge, comparing PRADA (n=114) with standard care (n=3730). RESULTS: At 90 days, the PRADA group were more likely to die (78.9% vs 46.2%, p<0.001), had a shorter time to death (58±90 vs 178±186 days, p<0.001) but readmission (20.2% vs 37.9%, p<0.001) or death in hospital (4.4% vs 28.9%, p<0.001) was lower with reduced risk for a combined 90-day outcome of postdischarge non-elective admission or hospital death (OR 0.45, 95% CI 0.27-0.74, p<0.001). Tightening criteria with 1:1 matching (n=83 vs 83) showed persistent significant findings in PRADA contact with markedly reduced adverse events (OR 0.15, 95% CI 0.02-0.96, p<0.05). CONCLUSIONS: Being seen in hospital by a specialist palliative care team using the PRADA tool was associated with significantly improved postdischarge outcomes pertaining to those destined to die after discharge.

13.
Cogitare Enferm. (Online) ; 28: e90288, Mar. 2023. tab
Artigo em Português | LILACS-Express | LILACS, BDENF - Enfermagem | ID: biblio-1520782

RESUMO

RESUMO: Objetivo: avaliar a consistência interna de instrumentos utilizados no Brasil para mensuração de situações de violência contra pessoa idosa em dois estados. Método: estudo de corte transversal, desenvolvido com 481 idosos, em duas amostras, estados e recorte temporal diferentes. Foram aplicados dois instrumentos de mensuração de violência contra pessoa idosa. Os dados foram analisados, e a consistência interna entre os itens foi medida pelo coeficiente de Alfa de Cronbach. Resultados: o Hwalek-Sengstock Elder Abuse Screening Test apresentou o coeficiente de α = 0,08 para amostra coletada na Paraíba, enquanto, em Pernambuco, foi α = 0,57. A Conflict Tactics Scale apresentou alta precisão para definição da violência com coeficiente de α = 0,81 e α = 0,80 para as duas amostras. Conclusões: apenas a Conflict Tactics Scale apresentou-se confiável e estável para determinação da violência de natureza física e psicológica entre idosos, contribuindo assim, como uma possibilidade de desvelar o fenômeno.


ABSTRACT Objective: to evaluate the internal consistency of instruments used in Brazil to measure situations of violence against the elderly in two states. Method: a cross-sectional study with 481 elderly people in two different samples, states, and time periods. Two instruments were used to measure violence against the elderly person. The data was analyzed and the internal consistency between the items was measured by the Cronbach's alpha coefficient. Results: the Hwalek-Sengstock Elder Abuse Screening Test showed a coefficient of α = 0.08 for the sample collected in Paraíba, while in Pernambuco it was α = 0.57. The Conflict Tactics Scale was highly accurate in defining violence, with a coefficient of α = 0.81 and α = 0.80 for the two samples. Conclusions: only the Conflict Tactics Scale turned out to be reliable and stable for determining physical and psychological violence among the elderly, thus contributing as a way of uncovering the phenomenon.


RESUMEN Objetivo: Evaluar la consistencia interna de instrumentos utilizados en Brasil para medir situaciones de violencia contra ancianos en dos estados. Método: Estudio transversal realizado con 481 ancianos en dos muestras, estados y periodos de tiempo diferentes. Se utilizaron dos instrumentos para medir la violencia contra ancianos. Se analizaron los datos y se midió la consistencia interna entre los ítems mediante el coeficiente alfa de Cronbach. Resultados: el Hwalek-Sengstock Elder Abuse Screening Test presentó un coeficiente de α = 0,08 para la muestra recogida en Paraíba, mientras que en Pernambuco fue de α = 0,57. La Escala de Tácticas de Conflicto fue altamente precisa en la definición de violencia, con coeficientes de α = 0,81 y α = 0,80 para ambas muestras. Conclusiones: sólo la Escala de Tácticas de Conflicto demostró ser fiable y estable para determinar la violencia física y psicológica entre ancianos, contribuyendo así a desvelar el fenómeno.

14.
J Bus Res ; 158: 113598, 2023 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-36590656

RESUMO

In business-to-business (B2B) operations, prior studies have mainly explored transaction-based relationships with both buyers and suppliers opportunistic behaviors, driven largely by their intent to maximize their own benefits. These studies have also found that dependency on partners increases when supply materials are scarce. However, research is scant on how this relationship changes in the face of exogenous forces such as the COVID-19 pandemic, keeping in mind the ethical perception considerations. This study aims to bridge this gap in the literature by studying how buyers and sellers leverage collaboration and resource-sharing to tide over pandemic-like situations similar to the current COVID-19 pandemic while considering their ethical perceptions. We conduct a multi-methodological study consisting of an industrial survey and an interview-based thematic analysis. In the first phase, we collect primary data using a structured questionnaire and conduct a covariance-based structural equation modeling (CB-SEM) analysis. In the second phase, we conduct a post-hoc test. We find that non-regular suppliers will share strategic resources with buyers during uncertain times (e.g. COVID-19 pandemic) if they have a high ethical perception of the buying firm and share a candid relationship despite being their irregular customers. Our findings propose that B2B firms should maintain healthy relationships with alternative suppliers to build trust and avoid supply crises in times of disruptions.

15.
BMJ Support Palliat Care ; 13(1): 35-44, 2023 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-34404745

RESUMO

BACKGROUND: Research is essential for gathering evidence to inform best practice and clinical decision making, for developing and testing new treatments and services in palliative and end-of-life care (PEoLC). The participation of patients, carers and family members is essential, however, personal and ethical concerns are often cited by professionals as barriers to recruitment. There is evidence that patients and family members can benefit from participation in PEoLC research. AIM: To synthesise the evidence regarding patients', family members' and carers' experiences of participating in PEoLC research. To identify recommendations for enhancing the experience of participants. DESIGN: A qualitative rapid review and thematic synthesis. DATA SOURCES: MEDLINE, PsycINFO and PubMed were searched from 2010 to 2020. Studies reporting patients', family members' or carers' experiences of participating in PEoLC research were included. RESULTS: 4 studies were included and 7 themes identified relating to the benefits of, and barriers to, participation in PEoLC research. Both altruistic and personal benefits of participation were reported. Barriers (negative aspects) to participation included feeling overwhelmed, practical issues, reminders of being a patient, not seeing the research as relevant to them and unmet needs. CONCLUSIONS: A number of benefits (positive aspects) surround participation in PEoLC research. However, several barriers (negative aspects) can prevent or discourage participation. This review has identified recommendations for research teams to enhance the experience, and number of people who those participating in research in this field.


Assuntos
Cuidados Paliativos na Terminalidade da Vida , Medicina Paliativa , Assistência Terminal , Humanos , Família , Cuidadores , Pesquisa Qualitativa
16.
J Sport Health Sci ; 12(3): 388-397, 2023 05.
Artigo em Inglês | MEDLINE | ID: mdl-34547482

RESUMO

BACKGROUND: Participation in sports is associated with many benefits to all aspects of health; however, it also comes with the risk of injury, particularly concussions. Self-disclosure and care seeking following a concussion are especially important because of the lack of outwardly visible signs and/or symptoms. Although recent research has explored factors affecting concussion disclosure, use of isolated methodologies limits the ability to contextualize how disclosure or nondisclosure occurs. Therefore, the purpose of this study was to describe the factors and expectations of National Collegiate Athletic Association (NCAA) athletes that may influence concussion disclosure. METHODS: This mixed-methods convergent parallel research study included 25 NCAA Division I athletes representing 13 sports, all of whom completed a concussion-education session with pre-/post-test surveys and a semistructured interview. Eligible athletes were at least 18 years old and on an NCAA roster. The surveys focused on previous concussion-related disclosure behaviors, knowledge, attitudes, beliefs, norms, and intentions about disclosing concussion. Interviews focused on the athletes' experiences related to concussion disclosure. Survey data were analyzed using descriptive statistics and Mann-Whitney U tests. Interviews were analyzed using a Consensual Qualitative Research tradition. RESULTS: Participants had good concussion knowledge (median = 46.0), positive attitudes (median = 38.0), strong beliefs (median = 13.0), and strong intentions to disclose concussion symptoms (median = 7.0). None of the constructs differed by participants' gender. Although quantitative findings were mostly positive, interview data highlighted factors that may explain why some participants are successful in disclosing concussions and why others may find disclosure difficult. Educational efforts, sport culture, and medical professional presence were the primary facilitators discussed by participants. Stigma, pressure, and a lack of team support were perceived as disclosure barriers. CONCLUSION: The context in which concussion disclosure occurs or does not occur is vital to the success of educational interventions. Interventions must prioritize stakeholder- and team-based perspectives on concussion to establish a network supportive to disclosure.


Assuntos
Traumatismos em Atletas , Concussão Encefálica , Humanos , Adolescente , Revelação , Traumatismos em Atletas/diagnóstico , Motivação , Concussão Encefálica/diagnóstico , Atletas
17.
BMJ Support Palliat Care ; 13(4): 374-385, 2023 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-35318213

RESUMO

BACKGROUND: Decision-making in palliative care usually involves both patients and family caregivers. However, how concordance and discordance in decision-making manifest and function between patients and family caregivers in palliative care is not well understood. OBJECTIVES: To identify key factors and/or processes which underpin concordance and/or discordance between patients and family caregivers with respect to their preferences for and decisions about palliative care; and ascertain how patients and family caregivers manage discordance in decision-making in palliative care. METHODS: A systematic review and narrative synthesis of original studies published in full between January 2000 and June 2021 was conducted using the following databases: Embase; Medline; CINAHL; AMED; Web of Science; PsycINFO; PsycARTICLES; and Social Sciences Full Text. RESULTS: After full-text review, 39 studies were included in the synthesis. Studies focused primarily on end-of-life care and on patient and family caregiver preferences for patient care. We found that discordance between patients and family caregivers in palliative care can manifest in relational conflict and can result from a lack of awareness of and communication about each other's preferences for care. Patients' advancing illness and impending death together with open dialogue about future care including advance care planning can foster consensus between patients and family caregivers. CONCLUSIONS: Patients and family caregivers in palliative care can accommodate each other's preferences for care. Further research is needed to fully understand how patients and family caregivers move towards consensus in the context of advancing illness.


Assuntos
Cuidados Paliativos na Terminalidade da Vida , Assistência Terminal , Humanos , Cuidados Paliativos/métodos , Cuidadores , Tomada de Decisões
19.
Cogitare Enferm. (Online) ; 28: e87628, 2023. tab, graf
Artigo em Português | LILACS-Express | LILACS, BDENF - Enfermagem | ID: biblio-1448020

RESUMO

RESUMO Objetivo: construir, validar o conteúdo e a aparência de instrumento para capacitação de enfermeiros no cuidado de ferida neoplásica. Método: pesquisa metodológica, com abordagem quantitativa, realizada em três etapas - revisão de escopo; construção do instrumento; validação do conteúdo; e aparência. Coleta de dados ocorreu no período entre outubro de 2021 a fevereiro de 2022, em Niterói - RJ - Brasil. Foram utilizados o Índice de Validação de Conteúdo; Fleiss Generalized Kappa. Resultados: o instrumento final é composto pelas fases: definição de ferida neoplásica; classificação da ferida; estadiamento; escalas de avaliação da dor e odor; cuidados de enfermagem; e manejo dos sinais e sintomas. O conteúdo foi validado, atingindo um índice de validação de conteúdo > 0.80 e um nível de concordância entre os juízes > 75%, conforme estabelecido. Conclusão: a validação do instrumento, contribuirá para a redução da lacuna expressa na literatura do cuidado de enfermagem em relação à ferida neoplásica, além da aplicação ao ensino e aos serviços de enfermagem.


ABSTRACT Objective: to create and validate the face and content of an instrument for training nurses in neoplastic wound care. Method: a methodological research study with a quantitative approach, carried out in three stages: scoping review; creation of the instrument; and face and content validation. Data collection took place between October 2021 and February 2022 in Niterói - RJ - Brazil. The Content Validation Index and Fleiss Generalized Kappa were used. Results: the final instrument consists of the following phases: definition of neoplastic wound; wound classification; staging; pain and odor rating scales; Nursing care; and management of signs and symptoms. The content was validated reaching a Content Validation Index > 0.80 and an agreement level between the judges > 75%, as established. Conclusion: validation of the instrument will contribute to reducing the gap indicated in the literature on Nursing care in relation to neoplastic wounds, in addition to its application to Nursing teaching and services.


RESUMEN Objetivo: elaborar, validar el contenido y la apariencia de un instrumento para capacitar a los enfermeros en el cuidado de heridas neoplásicas. Método: investigación metodológica, con enfoque cuantitativo, realizada en tres etapas: revisión de alcance; elaboración del instrumento; validación de contenido; y apariencia. La recolección de datos se realizó entre octubre de 2021 y febrero de 2022, en Niterói, RJ, Brasil. Se utilizó el Índice de Validación de Contenido; Fleiss Generalized Kappa. Resultados: el instrumento final consta de las fases: definición de herida neoplásica; clasificación de heridas; estadio; escalas de evaluación del dolor y olor; cuidados de enfermería; y manejo de signos y síntomas. Se validó el contenido, alcanzó un índice de validación de contenido > 0,80 y un nivel de concordancia entre los jueces > 75%, según lo establecido. Conclusión: la validación del instrumento contribuirá a reducir la brecha que hay en la literatura sobre el cuidado de enfermería de las heridas neoplásicas, además se aplicará en la enseñanza y los servicios de enfermería.

20.
Rev. bras. enferm ; 76(5): e20220497, 2023. tab, graf
Artigo em Inglês | LILACS-Express | LILACS, BDENF - Enfermagem | ID: biblio-1521710

RESUMO

ABSTRACT Objectives: to conduct a cross-cultural adaptation of the Breastfeeding Self-Efficacy Scale-Short Form (BSES-SF) for mothers of ill and/or preterm infants among Portuguese-speaking mothers in Brazil. Methods: a methodological study was completed, including the translation of the tool, synthesis of translations, review by experts, synthesis, reassessment of experts, back-translation, pre-test, and validation of the content. The study involved 19 participants, including a translator and experts. In addition, 18 mothers from the target population were included in the pre-test. Results: the equivalences of the opinion obtained by the committee of experts were semantic (85%), idiom (89%), cultural (86%), and conceptual (94%). The content validation coefficient (CVC) on the scale was 0.93 for clarity and understanding; 0.89 for practical relevance; 0.92 for relevance; and the average overall CVC was 0.91. Conclusions: the scale was translated and adapted to the Brazilian Portuguese language, which maintained the equivalences and confirmed the content validity.


RESUMO Objetivos: realizar adaptação transcultural da Breastfeeding Self-Efficacy Scale-Short Form (BSES-SF) para mães de bebês doentes e/ou prematuros para a língua portuguesa no contexto brasileiro. Métodos: foi realizado um estudo metodológico, incluindo a tradução do instrumento, síntese das traduções, revisão por especialistas, síntese, reavaliação de especialistas, retrotradução, pré-teste e validação do conteúdo. O estudo envolveu 19 participantes, incluindo os tradutores e especialistas. Além disso, 18 mães da população-alvo foram incluídas no pré-teste. Resultados: as equivalências da opinião obtida pelo comitê de especialistas foram: semântica (85%), idiomática (89%), cultural (86%) e conceitual (94%). O coeficiente de validação de conteúdo (CVC) da escala foi de 0,93 para clareza e compreensão; 0,89 para relevância prática; 0,92 para relevância; e a média geral do CVC foi de 0,91. Conclusões: a escala foi traduzida e adaptada para a língua portuguesa do Brasil, o que manteve as equivalências e confirmou a validade de conteúdo.


RESUMEN Objetivos: realizar la adaptación transcultural de la Breastfeeding Self-Efficacy Scale-Short Form (BSES-SF) para madres de niños enfermos y/o prematuros al portugués en el contexto brasileño. Métodos: se realizó un estudio metodológico que incluyó la traducción del instrumento, síntesis de traducciones, revisión por especialistas, síntesis, reevaluación por especialistas, retrotraducción, preprueba y validación de contenido. El estudio involucró a 19 participantes, incluidos traductores y expertos. Además, 18 madres de la población objetivo fueron incluidas en la preprueba. Resultados: las equivalencias de opinión obtenidas por el comité de expertos fueron: semántica (85%), idiomática (89%), cultural (86%) y conceptual (94%). El Coeficiente de Validación de Contenido (CVC) de la escala fue de 0,93 para claridad y comprensión; 0,89 para relevancia práctica; 0,92 para relevancia. El promedio general del CVC fue de 0,91. Conclusiones: la escala fue traducida y adaptada al portugués brasileño, lo que mantuvo las equivalencias y confirmó la validez de contenido.

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