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2.
Prev Sci ; 2024 Jan 04.
Artigo em Inglês | MEDLINE | ID: mdl-38175459

RESUMO

Systemic racism is pervasive in US society and disproportionately limits opportunities for education, work, and health for historically marginalized and minoritized racial and ethnic groups, making it an urgent issue of social justice. Because systemic racism is a social determinant of health prevalent across multiple social and institutional structures, it requires multilevel intervention approaches using effective designs and analytic methods to measure and evaluate outcomes. Racism is a fundamental cause of poor health outcomes, including mental health outcomes; thus, mental health services and programs that address racism and discrimination are key to promoting positive mental health of racial and ethnic minority youth. While multilevel interventions are well-suited for improving outcomes like youth mental health disparities, their evaluation poses unique methodological challenges, requiring specialized design and analytic approaches. There has been limited methodological guidance provided to researchers on how to test multilevel interventions using approaches that balance methodological rigor, practicality, and acceptability across stakeholder groups, especially within communities most affected by systemic racism. This paper addresses this gap by providing an example of how to rigorously evaluate a hypothetical, theoretically based, multilevel intervention promoting mental health equity in three US school systems using an anti-racist approach intervening at the macro- (i.e., school system), meso- (i.e., school), and micro- (i.e., family and student) levels to improve mental health in adolescents. We describe the design, sample size considerations, and analytic methods to comprehensively evaluate its effectiveness while exploring the extent to which the components interact synergistically to improve outcomes. The methodological approach proposed can be adapted to other multilevel interventions that include strategies addressing macro-, meso-, and micro-levels of influence.

3.
Geriatr Nurs ; 56: 40-45, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38237339

RESUMO

Oral health declines in older adults with cognitive impairment. We aimed to improve oral hygiene outcomes for individuals with mild cognitive impairment (MCI) or mild dementia (MD) by fostering behavior changes among carepartners assisting them. We used qualitative data of verbatim transcripts of coaching sessions with carepartners (n = 17 dyads:10 dyads for MCI, 7 dyads for MD). Directed and emergent coding were used to understand behavior change techniques (BCTs). BCTs were compared with carepartners of participants with MCI and MD. Most frequently used BCTs in both groups: prompts and cues, instruction on how to perform the behavior, review behavioral goal, and problem solving. Different BCTs emerged in study: social support-unspecified of the MCI group and credible source for MD group. Findings clarified active intervention components, common BCTs used by carepartners, and different BCT approaches for both participants. Findings help to elucidate the mechanisms of changes in individuals' behaviors in these interventions.


Assuntos
Disfunção Cognitiva , Demência , Humanos , Idoso , Cuidadores , Saúde Bucal , Terapia Comportamental/métodos , Disfunção Cognitiva/terapia
4.
Cancer Nurs ; 47(1): E28-E37, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-36076314

RESUMO

BACKGROUND: Patients with gastrointestinal cancers experience diurnal variations in fatigue severity during chemotherapy that decrease their functional status and quality of life. OBJECTIVES: Study purposes were to identify subgroups of patients with distinct co-occurring morning and evening fatigue profiles and evaluate for differences among these subgroups in demographic, clinical, stress, and symptom characteristics. METHODS: Patients with gastrointestinal cancers (n = 405) completed questionnaires 6 times over 2 cycles of chemotherapy. The Lee Fatigue Scale was used to evaluate diurnal variations in fatigue severity. Latent profile analysis was used to identify subgroups of patients with distinct co-occurring morning AND evening fatigue profiles. Differences among the subgroups in demographic, clinical, stress, and symptom characteristics at enrollment were evaluated using parametric and nonparametric analyses. RESULTS: Two classes were identified, namely: low morning and moderate evening fatigue (ie, Low-Moderate, 60.0%) and high morning and high evening fatigue (ie, Both High, 40.0%). Compared with the Low-Moderate class, the Both High class was significantly younger, female, unmarried, and unemployed and lacked regular exercise. In addition, they had childcare responsibilities, lower annual income, lower functional status, higher comorbidity burden, and self-reported anemia and depression. Patients in the Both High class reported higher levels of anxiety, depressive symptoms, sleep disturbance, pain, and stress, and lower levels of energy and cognitive function. CONCLUSIONS: Findings provide new insights into the risk factors for higher levels of co-occurring morning and evening fatigue in patients with gastrointestinal cancers. IMPLICATIONS FOR PRACTICE: Clinicians can use this information to identify high-risk patients and develop personalized symptom management interventions.


Assuntos
Antineoplásicos , Neoplasias Gastrointestinais , Neoplasias , Feminino , Humanos , Antineoplásicos/efeitos adversos , Fadiga/etiologia , Neoplasias Gastrointestinais/complicações , Neoplasias Gastrointestinais/tratamento farmacológico , Estudos Longitudinais , Neoplasias/complicações , Neoplasias/tratamento farmacológico , Neoplasias/diagnóstico , Qualidade de Vida , Masculino
5.
EClinicalMedicine ; 62: 102104, 2023 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-37533421

RESUMO

Background: Systemic sclerosis is a heterogenous disease in which little is known about patterns of patient-reported symptom clusters. We aimed to identify classes of individuals with similar anxiety, depression, fatigue, sleep disturbance, and pain symptoms and to evaluate associated sociodemographic and disease-related characteristics. Methods: This multi-centre cross-sectional study used baseline data from Scleroderma Patient-centered Intervention Network Cohort participants enrolled from 2014 to 2020. Eligible participants completed the PROMIS-29 v2.0 measure. Latent profile analysis was used to identify homogeneous classes of participants based on patterns of anxiety, depression, fatigue, sleep disturbance, and pain scores. Sociodemographic and disease-related characteristics were compared across classes. Findings: Among 2212 participants, we identified five classes, including four classes with "Low" (565 participants, 26%), "Normal" (651 participants, 29%), "High" (569 participants, 26%), or "Very High" (193 participants, 9%) symptom levels across all symptoms. Participants in a fifth class, "High Fatigue/Sleep/Pain and Low Anxiety/Depression" (234 participants, 11%) had similar levels of fatigue, sleep disturbance, and pain as in the "High" class but low anxiety and depression symptoms. There were significant and substantive trends in sociodemographic characteristics (age, education, race or ethnicity, marital or partner status) and increasing disease severity (diffuse disease, tendon friction rubs, joint contractures, gastrointestinal symptoms) across severity-based classes. Disease severity and sociodemographic characteristics of "High Fatigue/Sleep/Pain and Low Anxiety/Depression" class participants were similar to the "High" severity class. Interpretation: Most people with systemic sclerosis can be classified by levels of patient-reported symptoms, which are consistent across symptoms and highly associated with sociodemographic and disease-related variables, except for one group which reports low mental health symptoms despite high levels of other symptoms and substantial disease burden. Studies are needed to better understand resilience in systemic sclerosis and to identify and facilitate implementation of cognitive and behavioural strategies to improve coping and overall quality of life. Funding: National Institute of Nursing Research (F31NR019007), Canadian Institutes of Health Research, Arthritis Society Canada, the Lady Davis Institute for Medical Research, the Jewish General Hospital Foundation, McGill University, Scleroderma Society of Ontario, Scleroderma Canada, Sclérodermie Québec, Scleroderma Manitoba, Scleroderma Atlantic, Scleroderma Association of BC, Scleroderma SASK, Scleroderma Australia, Scleroderma New South Wales, Scleroderma Victoria, and Scleroderma Queensland.

6.
JAMA Pediatr ; 177(10): 995-996, 2023 Oct 01.
Artigo em Inglês | MEDLINE | ID: mdl-37548966

RESUMO

This Viewpoint explores the conundrum of Krabbe disease and whether it should be added to a newborn screening panel by looking at harms vs benefits.

7.
J Dev Behav Pediatr ; 44(5): e379-e387, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37084319

RESUMO

OBJECTIVES: The purpose of this study is to explore which newborn screening (NBS) conditions are automatically eligible for early intervention (EI) across states and to determine the extent to which each disorder should automatically qualify for EI because of a high probability of developmental delay. METHODS: We examined each state's EI eligibility policy and reviewed the literature documenting developmental outcomes for each NBS condition. Using a novel matrix, we assessed the risk of developmental delay, medical complexity, and risk of episodic decompensation, revising the matrix iteratively until reaching consensus. Three NBS conditions (biotinidase deficiency, severe combined immunodeficiency, and propionic acidemia) are presented in detail as examples. RESULTS: Most states (88%) had Established Conditions lists to autoqualify children to EI. The average number of NBS conditions listed was 7.8 (range 0-34). Each condition appeared on average in 11.7 Established Conditions lists (range 2-29). After the literature review and consensus process, 29 conditions were likely to meet national criteria for an Established Condition. CONCLUSION: Despite benefiting from NBS and timely treatment, many children diagnosed with NBS conditions are at risk for developmental delays and significant medical complexity. The results demonstrate a need for more clarity and guidance regarding which children should qualify for EI. We suggest that most NBS conditions should automatically qualify based on the probability of resulting in a developmental delay. These findings suggest a future opportunity for collaboration between NBS and EI programs to create a consistent set of Established Conditions, potentially expediate referrals of eligible children, and streamline children's access to EI services.


Assuntos
Deficiências do Desenvolvimento , Acidemia Propiônica , Criança , Recém-Nascido , Humanos , Lactente , Deficiências do Desenvolvimento/diagnóstico , Deficiências do Desenvolvimento/terapia , Triagem Neonatal , Definição da Elegibilidade/métodos , Fatores de Risco
8.
J Assoc Nurses AIDS Care ; 34(1): 113-124, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-35862630

RESUMO

ABSTRACT: Stigma is a fundamental cause of health inequities. Guided by the Adaptive Leadership Framework for Chronic Illness (ALFCI), this descriptive qualitative study explored the challenges of stigma and disclosure experienced by women with HIV (WWH) in the Southern United States. A convenience sample of 22 WWH aged 36 to 62 years were interviewed for this study. Analysis of participant interviews revealed that WWH face a multitude of stigma-related technical and adaptive challenges, which are consistent with the ALFCI. Once identified, technical challenges, such as recognizing the need for support, lack of trust, and fear of rejection, can be overcome by technical work, including providing assistance with HIV disclosure and building a trusted network. By identifying specific adaptive and technical challenges faced by WWH and engaging in technical and adaptive work, the WWH and the provider can reduce the fear of disclosure and the effect of stigma.


Assuntos
Revelação , Infecções por HIV , Humanos , Feminino , Estados Unidos , Liderança , Estigma Social , Medo , Pesquisa Qualitativa
9.
Cancer Nurs ; 46(3): E146-E158, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-35089873

RESUMO

BACKGROUND: High-dose interleukin-2 is a therapy available for individuals with renal cell carcinoma; however, it can produce adverse effects, specifically depressive symptoms. There is limited information regarding the trajectory of depressive symptoms and measurement-based care assessment of depressive symptoms. OBJECTIVE: The purpose was to describe the trajectory of depressive symptoms and compare 2 depression measures. METHODS: A descriptive, mixed-method case study approach was used to describe the longitudinal trajectory of depressive symptoms The qualitative assessment included a journal entry and an interview. The quantitative depression symptom severity measures included the 8-item self-report Patient-Reported Outcomes Measurement Information System Depression and the 30-item Inventory of Depressive Symptomatology-Clinician Rated (IDS-C). RESULTS: Ten cases were enrolled. The maximum number of interleukin-2 doses that any patient received within a single hospitalization ranged from 4 to 12. Mean scores on the 8-item Patient-Reported Outcomes Measurement Information System Depression showed no changes in depressive symptoms from pretreatment to posttreatment, nor across hospitalizations. Mean total scores on the IDS-C increased from "normal" to "mild severity" depressive symptom range across all treatment cycles, suggesting transient depressive symptoms within hospitalizations. Qualitative data from the case supported the IDS-C increase, suggesting that the patient developed depressive symptoms pretreatment to posttreatment. CONCLUSIONS: Understanding the trajectory of depressive symptoms allows for the identification of critical time points when depressive symptoms present and change across treatment. It is critical to use measurement-based care using validated measures to assess for the presence and changes in depressive symptoms. IMPLICATIONS FOR PRACTICE: Validated self-report or clinician-rated depression symptom measures should be used to document the presence or absence of depressive symptoms in this population.


Assuntos
Depressão , Neoplasias , Humanos , Depressão/epidemiologia , Interleucina-2/efeitos adversos , Neoplasias/complicações , Neoplasias/tratamento farmacológico
10.
BMJ Support Palliat Care ; 13(e2): e373-e381, 2023 Dec 07.
Artigo em Inglês | MEDLINE | ID: mdl-34049967

RESUMO

BACKGROUND: Purposes were to identify subgroups of patients with gastrointestinal cancers with distinct morning and evening fatigue severity profiles and evaluate for differences among these subgroups in demographic and clinical characteristics, co-occurring symptoms and quality of life (QOL) outcomes. METHODS: Patients with gastrointestinal cancers (n=405) completed questionnaires six times over two cycles of chemotherapy. Latent profile analysis was used to identify distinct morning and evening fatigue profiles. Differences in demographic and clinical characteristics, co-occurring symptoms and QOL outcomes among the subgroups were evaluated using parametric and nonparametric tests. RESULTS: Two distinct mornings (ie, low and very high) and three distinct evenings (ie, low, moderate and very high) fatigue classes were identified. Common risk factors for both morning and evening fatigue included younger age, lower performance status, higher comorbidity burden and self-reported depression. Higher levels of morning fatigue were associated with being unmarried, living alone, being unemployed, having a lower income, lack of regular exercise and a self-reported diagnosis of anaemia. Higher levels of evening fatigue were associated with being women, white and having childcare responsibilities. Patients in the very high morning and evening fatigue classes reported higher levels of anxiety, depressive symptoms, sleep disturbance and pain and lower levels of attentional function and poorer QOL. CONCLUSION: Findings provide new insights into risk factors for and deleterious effects of morning and evening fatigue in patients with gastrointestinal cancers. Clinicians can use this information to identify high-risk patients and develop individualised interventions for morning and evening fatigue and other co-occurring symptoms.


Assuntos
Fadiga , Neoplasias Gastrointestinais , Feminino , Humanos , Masculino , Antineoplásicos/uso terapêutico , Fadiga/etiologia , Neoplasias Gastrointestinais/complicações , Neoplasias Gastrointestinais/tratamento farmacológico , Qualidade de Vida
11.
J Am Psychiatr Nurses Assoc ; : 10783903221141890, 2022 Dec 07.
Artigo em Inglês | MEDLINE | ID: mdl-36475415

RESUMO

BACKGROUND: The inconsistent course of schizophrenia causes a long-term experience of uncertainty for individuals and their families. In Turkey, no studies yet exist that have attempted to address this constant uncertainty that is experienced by caregivers of schizophrenic patients. AIMS: To evaluate the effects of the Uncertainty Management Psychoeducation Program on reducing uncertainty and intolerance to uncertainty, improving psychological well-being, and coping styles in caregivers of patients with schizophrenia. METHOD: Single-blinded randomized controlled trial. Caregivers of schizophrenia inpatients were recruited from the psychiatry clinic of a university-affiliated hospital. Data were collected between April 2019 and August 2020. Eligible individuals were randomly allocated to one of the two groups: intervention or control. The intervention group had five individual psychoeducation sessions: "Recognizing Uncertainty," "Cognitively Reframing Uncertainty," "Solving Uncertainty-Related Issues," "Dealing with Uncertainty Using Communication Skills," and the "Closing Session." Participants in the control group received the usual care. Uncertainty, intolerance to uncertainty, psychological well-being, and stress coping strategies were measured at two points: at baseline and immediately following the intervention. Hypotheses were tested using the Mann-Whitney U and Wilcoxon tests. RESULTS: A total of 54 participants were recruited. The intervention group's ratings for "seeking social support" and "optimistic approach" were higher than the control group's ratings. Significant within-group changes in terms of "uncertainty" and "optimistic approach" were reported for the intervention group in the post-intervention. In the control group, significant changes were seen in terms of "uncertainty" and "psychological well-being" over time. CONCLUSION: The Uncertainty Management Psychoeducation Program was found to be effective in reducing the level of uncertainty, increasing their optimistic approach, and seeking social support of caregivers of schizophrenic patients.

12.
Front Genet ; 13: 891592, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35646095

RESUMO

A challenge in implementing population-based DNA screening is providing sufficient information, that is, understandable and acceptable, and that supports informed decision making. Early Check is an expanded newborn screening study offered to mothers/guardians whose infants have standard newborn screening in North Carolina. We developed electronic education and consent to meet the objectives of feasibility, acceptability, trustworthiness, and supporting informed decisions. We used two methods to evaluate Early Check among mothers of participating infants who received normal results: an online survey and interviews conducted via telephone. Survey and interview domains included motivations for enrollment, acceptability of materials and processes, attitudes toward screening, knowledge recall, and trust. Quantitative analyses included descriptive statistics and assessment of factors associated with knowledge recall and trust. Qualitative data were coded, and an inductive approach was used to identify themes across interviews. Survey respondents (n = 1,823) rated the following as the most important reasons for enrolling their infants: finding out if the baby has the conditions screened (43.0%), and that no additional blood samples were required (20.1%). Interview respondents (n = 24) reported the value of early knowledge, early intervention, and ease of participation as motivators. Survey respondents rated the study information as having high utility for decision making (mean 4.7 to 4.8 out of 5) and 98.2% agreed that they had sufficient information. Knowledge recall was relatively high (71.8-92.5% correct), as was trust in Early Check information (96.2% strongly agree/agree). Attitudes about Early Check screening were positive (mean 0.1 to 0.6 on a scale of 0-4, with lower scores indicating more positive attitudes) and participants did not regret participation (e.g., 98.6% strongly agreed/agreed Early Check was the right decision). Interview respondents further reported positive attitudes about Early Check materials and processes. Early Check provides a model for education and consent in large-scale DNA screening. We found evidence of high acceptability, trustworthiness and knowledge recall, and positive attitudes among respondents. Population-targeted programs need to uphold practices that result in accessible information for those from diverse backgrounds. Additional research on those who do not select screening, although ethically and practically challenging, is important to inform population-based DNA screening practices.

13.
BMC Womens Health ; 22(1): 217, 2022 06 09.
Artigo em Inglês | MEDLINE | ID: mdl-35681158

RESUMO

BACKGROUND: Women living with HIV (WLWH) report low engagement in health care, missed office visits, and less engagement in the clinical encounter. Strengthening the clinical encounter for WLWH may improve health outcomes and quality of life. The Adaptive Leadership Framework for Chronic Illness offers specific adaptive leadership strategies for providers to improve patient-provider interactions. The purpose of this study was to examine adaptive leadership behaviors that contribute to the development of effective patient-provider communication from the perspectives of WLWH. METHODS: The descriptive, cross-sectional and qualitative study conducted interviews with 22 WLWH to assess perceptions of the clinical encounter related to HIV-related stigma, engagement in care, medical distrust, and experiences with discrimination and quality of life. Members of the study team using a set of a priori codes analyzed data using NVivo 12.0. RESULTS: Participants described two primary themes and subthemes of each for adaptive leadership behaviors. The primary theme for adaptive leadership of providers was "my provider cares about me"; subthemes were communication, trust building takes time, and supportive providers are trusted. The primary theme for adaptive leadership of WLWH themselves was "I care about me; subthemes were self-advocacy and self-empowerment. CONCLUSIONS: Providers can use adaptive leadership behaviors during clinical encounters to support WLWH, improve patient-provider communication, enhance trust, and improve patient outcomes.


Assuntos
Infecções por HIV , Estudos Transversais , Feminino , Humanos , Liderança , Pesquisa Qualitativa , Qualidade de Vida , Estigma Social
14.
J Assoc Nurses AIDS Care ; 33(3): 259-269, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35500057

RESUMO

ABSTRACT: Women living with HIV have a higher burden of non-AIDS comorbidities and prevalence of chronic conditions. The Adaptive Leadership Framework for Chronic Illness clarifies living with complex health challenges by delineating the technical work of health care providers as well as the adaptive work and leadership behaviors of patients and their providers. We conducted a descriptive, qualitative study of women residing in the Southern United States who were participating in the Women's Interagency HIV Study in North Carolina. Twenty-two participants (mean age = 52.2 years; 90.9% self-identifying as Black or African American) completed semi-structured qualitative interviews. We identified adaptive challenges (e.g., affective and disclosure challenges) and adaptive work and leadership behaviors. Women learned skills to care for their health and support their families and to work with their providers to manage their care. Findings support the importance of identifying leadership behaviors for the purpose of developing person-centered interventions.


Assuntos
Infecções por HIV , Liderança , Negro ou Afro-Americano/psicologia , Doença Crônica , Feminino , Infecções por HIV/epidemiologia , Infecções por HIV/psicologia , Humanos , Masculino , Pessoa de Meia-Idade , North Carolina/epidemiologia , Pesquisa Qualitativa , Estados Unidos/epidemiologia
15.
Mol Diagn Ther ; 26(3): 253-261, 2022 05.
Artigo em Inglês | MEDLINE | ID: mdl-35507129

RESUMO

Molecular diagnostics and therapies play a central role in an era of precision medicine, with the promise of more accurate diagnoses and more effective treatments. Universal newborn screening (NBS) identifies those health conditions that must be treated in early life and before clinical symptoms become apparent, to maximize effectiveness, prevent morbidity, and reduce or eliminate mortality. However, enthusiasm about NBS as the logical platform for early identification is tempered by the realization that NBS under public health authority exists in a complex ecology in which technology and medicine intersect with politics, ethics, advocacy, and resource constraints-a classic translational challenge that is exacerbated when considering the possible introduction of genome sequencing and molecular therapies in NBS. Substantial change is inevitable if the current model of NBS can be prepared for an envisioned future of greatly expanded molecular diagnostics and therapies. A window of opportunity for modernization now exists, but what changes are needed? The purpose of this commentary is to identify five major initiatives to stimulate focused discussion on how modernization might be achieved: (1) build systems for more rapid collection and integration of extant data relevant to NBS; (2) establish a national network of NBS research centers to design and conduct prospective research studies addressing critical NBS questions; (3) create a network of regional NBS laboratories to expedite state implementation of new methodologies or screening for newly recommended conditions; (4) establish a new stream of federal funding to provide financial support for states and incentivize national harmonization; and (5) integrate solutions in a way that is strategic and effective. Some aspects of these recommendations suggest that radical policy changes are needed to implement molecular testing in NBS and take advantage of emerging molecular therapies. I focus on recommendations for modernizing NBS in the US, some of which may be applicable in other countries.


Assuntos
Triagem Neonatal , Medicina de Precisão , Humanos , Recém-Nascido , Triagem Neonatal/métodos , Estudos Prospectivos
16.
Plant Methods ; 18(1): 59, 2022 May 03.
Artigo em Inglês | MEDLINE | ID: mdl-35505428

RESUMO

BACKGROUND: There is a demand for non-destructive systems in plant phenotyping which could precisely measure plant traits for growth monitoring. In this study, the growth of chilli plants (Capsicum annum L.) was monitored in outdoor conditions. A non-destructive solution is proposed for growth monitoring in 3D using a single mobile phone camera based on a structure from motion algorithm. A method to measure leaf length and leaf width when the leaf is curled is also proposed. Various plant traits such as number of leaves, stem height, leaf length, and leaf width were measured from the reconstructed and segmented 3D models at different plant growth stages. RESULTS: The accuracy of the proposed system is measured by comparing the values derived from the 3D plant model with manual measurements. The results demonstrate that the proposed system has potential to non-destructively monitor plant growth in outdoor conditions with high precision, when compared to the state-of-the-art systems. CONCLUSIONS: In conclusion, this study demonstrated that the methods proposed to calculate plant traits can monitor plant growth in outdoor conditions.

17.
J Imaging ; 8(4)2022 Mar 24.
Artigo em Inglês | MEDLINE | ID: mdl-35448215

RESUMO

The Union-Retire CCA (UR-CCA) algorithm started a new paradigm for connected components analysis. Instead of using directed tree structures, UR-CCA focuses on connectivity. This algorithmic change leads to a reduction in required memory, with no end-of-row processing overhead. In this paper we describe a hardware architecture based on UR-CCA and its realisation on an FPGA. The memory bandwidth and pipelining challenges of hardware UR-CCA are analysed and resolved. It is shown that up to 36% of memory resources can be saved using the proposed architecture. This translates directly to a smaller device for an FPGA implementation.

18.
J Assoc Nurses AIDS Care ; 33(2): 224-234, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35195613

RESUMO

ABSTRACT: Black women living with HIV (WLWH) face individual and sociostructural challenges. Despite these challenges, many exemplify remarkable levels of resilience and coping. Yet, research on resilience and coping in this population is limited. Twenty Black WLWH in the Southern United States completed semi-structured interviews that explored challenges facing WLWH. We identified six themes related to resilience and coping: self-acceptance, disclosure, self-compassion, social support, will to live, and service. Of these, social support was a driving protective element and an essential component to building and sustaining resilience and coping. Women who experienced positive support often expressed a will to live as well as a desire to support other WLWH. Resilience and social support were characterized by patterns of reciprocity, in that they were mutually sustaining, stabilizing, and strengthening.


Assuntos
Infecções por HIV , Adaptação Psicológica , População Negra , Feminino , Infecções por HIV/epidemiologia , Humanos , Pesquisa Qualitativa , Apoio Social , Estados Unidos
19.
JMIR Pediatr Parent ; 5(1): e30941, 2022 Feb 10.
Artigo em Inglês | MEDLINE | ID: mdl-35142618

RESUMO

BACKGROUND: Many research studies fail to enroll enough research participants. Patient-facing electronic health record applications, known as patient portals, may be used to send research invitations to eligible patients. OBJECTIVE: The first aim was to determine if receipt of a patient portal research recruitment invitation was associated with enrollment in a large ongoing study of newborns (Early Check). The second aim was to determine if there were differences in opening the patient portal research recruitment invitation and study enrollment by race and ethnicity, age, or rural/urban home address. METHODS: We used a computable phenotype and queried the health care system's clinical data warehouse to identify women whose newborns would likely be eligible. Research recruitment invitations were sent through the women's patient portals. We conducted logistic regressions to test whether women enrolled their newborns after receipt of a patient portal invitation and whether there were differences by race and ethnicity, age, and rural/urban home address. RESULTS: Research recruitment invitations were sent to 4510 women not yet enrolled through their patient portals between November 22, 2019, through March 5, 2020. Among women who received a patient portal invitation, 3.6% (161/4510) enrolled their newborns within 27 days. The odds of enrolling among women who opened the invitation was nearly 9 times the odds of enrolling among women who did not open their invitation (SE 3.24, OR 8.86, 95% CI 4.33-18.13; P<.001). On average, it took 3.92 days for women to enroll their newborn in the study, with 64% (97/161) enrolling their newborn within 1 day of opening the invitation. There were disparities by race and urbanicity in enrollment in the study after receipt of a patient portal research invitation but not by age. Black women were less likely to enroll their newborns than White women (SE 0.09, OR 0.29, 95% CI 0.16-0.55; P<.001), and women in urban zip codes were more likely to enroll their newborns than women in rural zip codes (SE 0.97, OR 3.03, 95% CI 1.62-5.67; P=.001). Black women (SE 0.05, OR 0.67, 95% CI 0.57-0.78; P<.001) and Hispanic women (SE 0.07, OR 0.73, 95% CI 0.60-0.89; P=.002) were less likely to open the research invitation compared to White women. CONCLUSIONS: Patient portals are an effective way to recruit participants for research studies, but there are substantial racial and ethnic disparities and disparities by urban/rural status in the use of patient portals, the opening of a patient portal invitation, and enrollment in the study. TRIAL REGISTRATION: ClinicalTrials.gov NCT03655223; https://clinicaltrials.gov/ct2/show/NCT03655223.

20.
Oncol Nurs Forum ; 49(2): 105-112, 2022 03 01.
Artigo em Inglês | MEDLINE | ID: mdl-35191901

RESUMO

This article provides an overview of the process, development, and evaluation of the Symptom Science Colloquium sponsored by the National Institute of Nursing Research, Oncology Nursing Society (ONS), and National Cancer Institute. This colloquium was the first of its kind to leverage the common goals of these institutes to advance oncology symptom science. Specifically, this article will identify the goals of the agencies involved and synergy in forming this collaboration, review the ONS Research Agenda that provided the blueprint for the colloquium, and offer insights and lessons learned to be used for future planning. The colloquium engaged roughly 500 participants from all levels of clinical (RNs, advanced practice nurses), educational (undergraduate, master's, doctorate), and research (students, faculty, scientists) expertise. Six featured expert speakers and 115 poster presentations focused on the latest research in symptom science, cancer survivorship, palliative and end-of-life care, and hot topics (COVID-19, health disparities). Fourteen networking sessions fostered opportunities to engage with international experts. Special awards emphasized mentee-mentor relationships and exemplary midcareer faculty. Based on this emphasis, the authors provide themes from the successful award applications as exemplars. A summary of participant satisfaction and recommendations for future collaborations to enhance and advance oncology symptom science are provided.


Assuntos
COVID-19 , Pesquisa em Enfermagem , Humanos , National Cancer Institute (U.S.) , National Institute of Nursing Research (U.S.) , Enfermagem Oncológica , SARS-CoV-2 , Estados Unidos
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