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1.
BMC Med Inform Decis Mak ; 24(1): 140, 2024 May 27.
Artigo em Inglês | MEDLINE | ID: mdl-38802865

RESUMO

BACKGROUND: Improving shared decision-making using a treat-to-target approach, including the use of clinical outcome measures, is important to providing high quality care for rheumatoid arthritis (RA). We developed an Electronic Health Record (EHR) integrated, patient-facing sidecar dashboard application that displays RA outcomes, medications, and lab results for use during clinical visits ("RA PRO dashboard"). The purpose of this study was to assess clinician perceptions and experiences using the dashboard in a university rheumatology clinic. METHODS: We conducted focus group (FG) discussions with clinicians who had access to the dashboard as part of a randomized, stepped-wedge pragmatic trial. FGs explored clinician perceptions towards the usability, acceptability, and usefulness of the dashboard. FG data were analyzed thematically using deductive and inductive techniques; generated themes were categorized into the domains of the Technology Acceptance Model (TAM). RESULTS: 3 FG discussions were conducted with a total of 13 clinicians. Overall, clinicians were enthusiastic about the dashboard and expressed the usefulness of visualizing RA outcome trajectories in a graphical format for motivating patients, enhancing patient understanding of their RA outcomes, and improving communication about medications. Major themes that emerged from the FG analysis as barriers to using the dashboard included inconsistent collection of RA outcomes leading to sparse data in the dashboard and concerns about explaining RA outcomes, especially to patients with fibromyalgia. Other challenges included time constraints and technical difficulties refreshing the dashboard to display real-time data. Methods for integrating the dashboard into the visit varied: some clinicians used the dashboard at the beginning of the visit as they documented RA outcomes; others used it at the end to justify changes to therapy; and a few shared it only with stable patients. CONCLUSIONS: The study provides valuable insights into clinicians' perceptions and experiences with the RA PRO dashboard. The dashboard showed promise in enhancing patient-clinician communication, shared decision-making, and overall acceptance among clinicians. Addressing challenges related to data collection, education, and tailoring dashboard use to specific patient populations will be crucial for maximizing its potential impact on RA care. Further research and ongoing improvements in dashboard design and implementation are warranted to ensure its successful integration into routine clinical practice.


Assuntos
Artrite Reumatoide , Atitude do Pessoal de Saúde , Registros Eletrônicos de Saúde , Grupos Focais , Pesquisa Qualitativa , Humanos , Artrite Reumatoide/tratamento farmacológico , Artrite Reumatoide/terapia , Masculino , Feminino , Pessoa de Meia-Idade , Adulto , Avaliação de Resultados em Cuidados de Saúde , Tomada de Decisão Compartilhada
2.
Ethn Health ; 28(6): 836-852, 2023 08.
Artigo em Inglês | MEDLINE | ID: mdl-36907661

RESUMO

OBJECTIVE: To determine whether inequities in COVID-19 infection and hospitalization differ from those for common medical conditions: influenza, appendicitis, and all-cause hospitalization. DESIGN: Retrospective study based on electronic health records of three healthcare systems in San Francisco (university, public, and community) examining (1) racial/ethnic distribution in cases and hospitalization among patients with diagnosed COVID-19 (March-August 2020) and patients with diagnosed influenza, diagnosed appendicitis, or all-cause hospitalization (August 2017-March 2020), and (2) sociodemographic predictors of hospitalization among those with diagnosed COVID-19 and influenza. RESULTS: Patients 18 years or older with diagnosed COVID-19 (N = 3934), diagnosed influenza (N = 5932), diagnosed appendicitis (N = 1235), or all-cause hospitalization (N = 62,707) were included in the study. The age-adjusted racial/ethnic distribution of patients with diagnosed COVID-19 differed from that of patients with diagnosed influenza or appendicitis for all healthcare systems, as did hospitalization from these conditions compared to any cause. For example, in the public healthcare system, 68% of patients with diagnosed COVID-19 were Latine, compared with 43% of patients with diagnosed influenza, and 48% of patients with diagnosed appendicitis (p < 0.05). In multivariable logistic regressions, COVID-19 hospitalizations were associated with male sex, Asian and Pacific Islander race/ethnicity, Spanish language, and public insurance in the university healthcare system, and Latine race/ethnicity and obesity in the community healthcare system. Influenza hospitalizations were associated with Asian and Pacific Islander and other race/ethnicity in the university healthcare system, obesity in the community healthcare system, and Chinese language and public insurance in both the university and community healthcare systems. CONCLUSIONS: Racial/ethnic and sociodemographic inequities in diagnosed COVID-19 and hospitalization differed from those for diagnosed influenza and other medical conditions, with consistently higher odds among Latine and Spanish-speaking patients. This work highlights the need for disease-specific public health efforts in at-risk communities in addition to structural upstream interventions.


Assuntos
Apendicite , COVID-19 , Influenza Humana , Humanos , Masculino , Apendicite/epidemiologia , Negro ou Afro-Americano/estatística & dados numéricos , Estudos de Coortes , COVID-19/epidemiologia , Hospitalização/estatística & dados numéricos , Influenza Humana/epidemiologia , Obesidade/epidemiologia , Estudos Retrospectivos , População Branca/estatística & dados numéricos , São Francisco/epidemiologia , Feminino , Adolescente , Adulto Jovem , Adulto , Nativo Asiático-Americano do Havaí e das Ilhas do Pacífico/estatística & dados numéricos , Hispânico ou Latino/estatística & dados numéricos
3.
J Hum Genet ; 65(12): 1067-1073, 2020 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-32724056

RESUMO

Genomics has the potential to revolutionize medical approaches to disease prevention, diagnosis, and treatment, but it does not come without challenges. The success of a national population-based genome program, like the Qatar Genome Program (QGP), depends on the willingness of citizens to donate samples and take up genomic testing services. This study explores public attitudes of the Qatari population toward genetic testing and toward participating in the QGP. A representative sample of 837 adult Qataris was surveyed in May 2016. Approximately 71% of respondents surveyed reported that they were willing to participate in the activities of the QGP. Willingness to participate was significantly associated with basic literacy in genetics, a family history of genetic diseases, and previous experience with genetic testing through premarital screening. Respondents cited the desire to know more about their health status as the principle motivation for participating, while lack of time and information were reported as the most important barriers. With QGP plans to ramp up the scale of its national operation toward more integration into clinical care settings, it is critical to understand public attitudes and their determinants. The results demonstrate public support but also identify the need for more education and individual counseling that not only provide information on the process, challenges, and benefits of genomic testing, but that also address concerns about information security.


Assuntos
Doenças Genéticas Inatas/diagnóstico , Testes Genéticos/tendências , Opinião Pública , Inquéritos e Questionários , Adulto , Feminino , Doenças Genéticas Inatas/genética , Doenças Genéticas Inatas/psicologia , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Catar/epidemiologia , Adulto Jovem
4.
J Gen Intern Med ; 35(6): 1684-1692, 2020 06.
Artigo em Inglês | MEDLINE | ID: mdl-32291720

RESUMO

BACKGROUND: Group-based lifestyle change programs based on the Diabetes Prevention Program (DPP) are associated with clinically significant weight loss and decreases in cardiometabolic risk factors. However, these benefits depend on successful real-world implementation. Studies have examined implementation in community settings, but less is known about integration in healthcare systems, and particularly in large, multi-site systems with the potential for extended reach. OBJECTIVE: To examine the barriers and facilitators to successful DPP implementation in a large multi-site healthcare system. DESIGN: Semi-structured interviews, based on the RE-AIM framework, were conducted in person for 30-90 min each. PARTICIPANTS: Past and present DPP lifestyle coaches in the healthcare system identified using purposive sampling. APPROACH: Thematic analysis of qualitative data to identify key factors influencing the success of DPP implementation. An iterative consensus process was used to model the relationships among factors. KEY RESULTS: We conducted 33 interviews across 20 clinic sites serving 12 counties. Participants described six key factors as potential barriers or facilitators to implementation, including (1) Broader Context, including the surrounding physical and sociodemographic context; (2) Institutional Context, including finances, infrastructure, and personnel; (3) Program Provision, including curriculum, administration, cost, goals, and visibility; (4) Recruitment Process, including screening and referrals; (5) Lifestyle Coaches, including their characteristics, behaviors, and morale; and (6) Cohort, including group attrition/retention and interpersonal dynamics. These factors were both highly interconnected in their impact on implementation and widely variable across sites within the healthcare system, as illustrated in our multi-level conceptual framework. CONCLUSIONS: This study identified key factors that could serve as barriers or facilitators in the implementation of DPP in large healthcare systems, from the perspective of lifestyle coaches. With further examination, the conceptual model presented here may be used for planning and managing the implementation of group-based behavioral interventions in these settings.


Assuntos
Diabetes Mellitus Tipo 2 , Estilo de Vida , Atenção à Saúde , Humanos , Pesquisa Qualitativa , Projetos de Pesquisa , Redução de Peso
5.
Arch Womens Ment Health ; 22(1): 1-14, 2019 02.
Artigo em Inglês | MEDLINE | ID: mdl-29721624

RESUMO

This systematic review synthesizes research on the influence of human and economic resources for women's empowerment on their pre- and postnatal mental health, understudied in the Arab world. We include articles using quantitative methods from PubMed and Web of Science. Two researchers reviewed databases and selected articles, double reviewing 5% of articles designated for inclusion. Twenty-four articles met inclusion criteria. All 24 articles measured depression as an outcome, and three included additional mental health outcomes. Nine of 17 studies found an inverse association between education and depression; two of 12 studies found contradictory associations between employment and depression, and four of six studies found a positive association between financial stress and depression. These results suggest that there is a negative association between education and depression and a positive association between financial stress and depression among women in the Arab world. Firm conclusions warrant caution due to limited studies meeting inclusion criteria and large heterogeneity in mental health scales used, assessment measures, and definitions of human and economic resources for women's empowerment. It is likely that education reduces depression among postpartum women and that financial stress increases their depression. These findings can be used to aid in the design of interventions to improve mother and child outcomes. However, more research in the Arab world is needed on the relationship between human and economic resources for women's empowerment and perinatal mental health, and more consistency is needed in how resources and mental health are measured.


Assuntos
Árabes/psicologia , Depressão Pós-Parto/etnologia , Empoderamento , Depressão/etnologia , Depressão Pós-Parto/epidemiologia , Feminino , Humanos , Saúde Mental/etnologia , Oriente Médio , Gravidez , Apoio Social , Fatores Socioeconômicos
6.
BMC Health Serv Res ; 19(1): 694, 2019 Oct 15.
Artigo em Inglês | MEDLINE | ID: mdl-31615525

RESUMO

BACKGROUND: Group-based Diabetes Prevention Programs (DPP), aligned with recommendations from the Centers for Disease Control and Prevention, promote clinically significant weight loss and reduce cardio-metabolic risks. Studies have examined implementation of the DPP in community settings, but less is known about its integration in healthcare systems. In 2010, a group-based DPP known as the Group Lifestyle Balance (GLB) was implemented within a large healthcare delivery system in Northern California, across three geographically distinct regional administration divisions of the organization within 12 state counties, with varying underlying socio-demographics. The regional divisions implemented the program independently, allowing for natural variation in its real-world integration. We leveraged this natural experiment to qualitatively assess the implementation of a DPP in this healthcare system and, especially, its fidelity to the original GLB curriculum and potential heterogeneity in implementation across clinics and regional divisions. METHODS: Using purposive sampling, we conducted semi-structured interviews with DPP lifestyle coaches. Data were analyzed using mixed-method techniques, guided by an implementation outcomes framework consisting of eight constructs: acceptability, adoption, appropriateness, cost, feasibility, fidelity, penetration, and sustainability. RESULTS: We conducted 33 interviews at 20 clinics across the three regional administrative divisions. Consistencies in implementation of the program were found across regions in terms of satisfaction with the evidence base (acceptability), referral methods (adoption), eligibility criteria (fidelity), and strategies to increase retention and effectiveness (sustainability). Heterogeneity in implementation across regions were found in all categories, including: the number and frequency of sessions (fidelity); program branding (adoption); lifestyle coach training (adoption), and patient-facing cost (cost). Lifestyle coaches expressed differing attitudes about curriculum content (acceptability) and suitability of educational level (appropriateness). While difficulties with recruitment were common across regions (feasibility), strategies used to address these challenges differed (sustainability). CONCLUSIONS: Variation exists in the implementation of the DPP within a large multi-site healthcare system, revealing a dynamic and important tension between retaining fidelity to the original program and tailoring the program to meet the local needs. Moreover, certain challenges across sites may represent opportunities for considering alternative implementation to anticipate these barriers. Further research is needed to explore how differences in implementation domains impact program effectiveness.


Assuntos
Diabetes Mellitus Tipo 2/prevenção & controle , Promoção da Saúde/métodos , California , Aconselhamento , Atenção à Saúde/organização & administração , Feminino , Educação em Saúde/métodos , Pessoal de Saúde , Estilo de Vida Saudável , Humanos , Masculino , Pessoa de Meia-Idade , Educação de Pacientes como Assunto/métodos , Avaliação de Programas e Projetos de Saúde/métodos , Projetos de Pesquisa , Redução de Peso
7.
Popul Health Manag ; 27(1): 13-25, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-38236711

RESUMO

The impacts of homelessness on health and health care access are detrimental. Intervention and efforts to improve outcomes and increase availability of affordable housing have mainly originated from the public health sector and government. The role that large community-based health systems may play has yet to be established. This study characterizes patients self-identified as homeless in acute care facilities in a large integrated health care system in Northern California to inform the development of collaborative interventions addressing unmet needs of this vulnerable population. The authors compared sociodemographic characteristics, clinical conditions, and health care utilization of individuals who did and did not self-identify as homeless and characterized their geographical distribution in relation to Sutter hospitals and homeless resources. Between July 1, 2019 and June 30, 2020, 5% (N = 20,259) of the acute care settings patients had evidence of homelessness, among which 51.1% age <45 years, 66.4% males, and 24% non-Hispanic Black. Patients experiencing homelessness had higher emergency department utilization and lower utilization of outpatient and urgent care services. Mental health conditions were more common among patients experiencing homelessness. More than half of the hospitals had >5% of patients who identified as homeless. Some hospitals with higher proportions of patients experiencing homelessness are not located near many shelter resources. By understanding patients who self-identify as homeless, it is possible to assess the role of the health system in addressing their unmet needs. Accurate identification is the first step for the health systems to develop and deliver better solutions through collaborations with nonprofit organizations, community partners, and government agencies.


Assuntos
Pessoas Mal Alojadas , Transtornos Mentais , Masculino , Humanos , Pessoa de Meia-Idade , Feminino , Habitação , Acessibilidade aos Serviços de Saúde , California
8.
Transl Behav Med ; 13(3): 168-182, 2023 04 03.
Artigo em Inglês | MEDLINE | ID: mdl-36694916

RESUMO

Participant engagement in structured lifestyle change programs (LCPs) is essential for adopting behaviors that promote weight loss; however, the challenges to, and facilitators that promote, engagement with such programs are not well understood. We conducted a mixed-methods study among real-world LCP participants to assess factors associated with program engagement and to examine the reasons for withdrawal. Using electronic health records (EHR), we identified LCP eligible participants between 2010 and 2017. Multivariable logistic regression was used to assess associations between program engagement and baseline characteristics. Semi-structured interviews with LCP participants were conducted and thematically analyzed to examine reasons for withdrawal. A total of 1,813 LCP participants were included. The median number of sessions attended was 10 of 21-25 sessions. Highest LCP engagement was associated with factors potentially related to self-efficacy/motivation, such as older age, higher baseline weight, prior healthcare utilization and an absence of a history of smoking or depression. Engagement was also negatively associated with being Non-Hispanic Black versus White. The qualitative analysis of the interviews revealed four general themes pertaining to participants' withdrawal: competing priorities, perceived program effectiveness, characteristics of the program, and facilitator-related factors. Taken together, results from this mixed-methods study suggest that motivation and self-efficacy are important for program engagement; future LCP enhancements should incorporate flexible formats that may help participants manage competing priorities and maximize personal and cultural relevance for all racial/ethnic groups, especially those who have not benefitted fully. Furthermore, participants should be encouraged to set realistic goals to manage expectations.


Engaging in a structured lifestyle change program (LCP) is essential to learn healthy behaviors, however, it is not well understood. This study examined factors associated with program engagement and reasons for program withdrawal at a large healthcare system. Highest LCP engagement was found to be associated to factors potentially related to self-efficacy/motivation including older age, higher initial weight, and prior healthcare utilization. Non-Hispanic Black, history of smoking, and prior diagnosis of depression were found to be negatively associated with LCP engagement. Program withdrawal was related to four themes: competing priorities, perceived program effectiveness, characteristics of the program, and facilitator-related factors. These findings suggest that motivation and self-efficacy are important for behavior change program engagement.


Assuntos
Estilo de Vida , Motivação , Humanos , Aceitação pelo Paciente de Cuidados de Saúde , Peso Corporal , Redução de Peso
9.
Obes Sci Pract ; 9(6): 641-652, 2023 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-38090689

RESUMO

Objective: Evaluations of lifestyle modification interventions (LMIs), modeled after the Diabetes Prevention Program, have repeatedly shown a dose-response relationship between session attendance and weight loss. Despite this, not all participants had "average" weight loss experiences. Nearly one-third of LMI participants experienced unexpected, paradoxical outcomes (i.e., high attendance with little weight loss, and low attendance with clinically significant weight loss). Paradoxical weight-loss outcomes were characterized based on session attendance among participants in a group-based LMI in a real-world healthcare setting. This group-based LMI was delivered over 1 year to participants with the possibility of attending up to 25 sessions total. Methods: LMI participants identified in 2010-2017 from electronic health records were characterized as having low (<75%) or high (≥75%) session attendance. Weight-loss outcomes were defined as expected (≥5%, high-attendance; <5%, low-attendance) or paradoxical (≥5%, low-attendance; <5%, high-attendance). Paradoxical-outcome-associated characteristics were identified using logistic regression. Results: Among 1813 LMI participants, 1498 (82.6%) had low and 315 (17.4%) high session attendance; 555 (30.6%) had paradoxical outcomes, comprising 415 (74.8%) responders (≥5% weight-loss) and 140 (25.2%) non-responders (<5% weight-loss). Among participants with high session attendance, paradoxical non-responders were more likely to be female (odds ratio [OR]: 2.76; 95% confidence interval [CI]: 1.32, 5.77) and have type 2 diabetes (OR: 3.32; 95% CI: 1.01, 10.95). Among low-attendance participants, paradoxical responders were more likely to be non-Hispanic White and less likely to be non-Hispanic Black (OR: 0.35; 95% CI: 0.18, 0.69), non-Hispanic Asian (OR: 0.40; 95% CI: 0.22, 0.73), or Hispanic (OR: 0.53; 95% CI: 0.35, 0.80). Conclusions: In a healthcare setting, nearly one-third of LMI participants experienced paradoxical outcomes. More research is needed to understand the facilitators and barriers to weight loss above and beyond session attendance.

10.
Am J Hosp Palliat Care ; 38(7): 785-793, 2021 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-33111553

RESUMO

BACKGROUND: Individuals with advanced cancer and their families have negative end-of-life experiences when the care they receive is not aligned with their values and preferences. OBJECTIVE: To obtain in-depth information on how patients with advanced cancer and the oncology and palliative care (PC) clinicians who care for them discuss goals of care (GoC). DESIGN: The research team conducted in-depth interviews and qualitative data analysis using open coding to identify how perspectives on GoC discussions vary by stage of illness, and experience with PC teams. SETTING/SUBJECTS: Twenty-five patients and 25 oncology and PC team members in a large multi-specialty group in Northern California. RESULTS: At the time of diagnosis participants described having establishing GoC conversations about understanding the goal of treatment (e.g. to extend life), and prognosis ("How much time do I have?"). Patients whose disease progressed or pain/symptoms increased reported changing GoC conversations about stopping treatment, introducing hospice care, prognostic awareness, quality of life, advance care planning, and end-of-life planning. Participants believed in the fluidity of prognosis and preferences for prognostic communication varied. Patients appreciated how PC teams facilitated changing GoC conversations. Timing was challenging; some patients desired earlier conversations and PC involvement, others wanted to wait until things were "going downhill." CONCLUSION: Patients and clinical teams acknowledged the complexity and importance of GoC conversations, and that PC teams enhanced conversations. The frequency, quality, and content of GoC conversations were shaped by patient receptivity, stage of illness, clinician attitudes and predispositions toward PC, and early integration of PC.


Assuntos
Planejamento Antecipado de Cuidados , Neoplasias , Comunicação , Humanos , Neoplasias/terapia , Cuidados Paliativos , Planejamento de Assistência ao Paciente , Qualidade de Vida
11.
Eat Behav ; 36: 101363, 2020 01.
Artigo em Inglês | MEDLINE | ID: mdl-31972513

RESUMO

Little is known about the impact of eating behaviors on weight management efforts among college students in non-Western settings. This study aimed to explore the relationship between eating behaviors, weight loss outcomes, and perceived weight loss difficulties (PWLD) among young Arab women trying to lose weight. A cross-sectional probability sample was used to recruit female university students aged 18 years and older in the state of Qatar. Participants (N = 937) completed an online survey measuring their attitudes and behaviors towards healthy eating, body image, and weight loss. More than two third (67.2%) reported facing difficulties when trying to lose weight and around one-third (31.2%) screened positive for disordered eating. Chi-squared and logistic regression analyses showed a strong and independent association between unsuccessful weight loss including lack of weight loss or maintenance after weight loss attempts, and PWLD (OR 8.6, p = .002). In addition, eating meals a few hours before sleeping (OR 1.98; p = .02) and having disordered eating (OR 2.28; p = .02) were positively associated with PWLD. BMI, weight loss goal and skipping breakfast were not associated with PWLD after adjustment for all covariates. Future studies are needed to develop better tools to comprehensively assess PWLD and validate against short- and long-term measured weight loss outcomes.


Assuntos
Imagem Corporal/psicologia , Comportamento Alimentar/psicologia , Transtornos da Alimentação e da Ingestão de Alimentos/psicologia , Universidades/estatística & dados numéricos , Redução de Peso/fisiologia , Adulto , Árabes , Estudos Transversais , Feminino , Humanos , Estudantes/estatística & dados numéricos , Adulto Jovem
12.
Popul Health Manag ; 23(6): 430-437, 2020 12.
Artigo em Inglês | MEDLINE | ID: mdl-31816257

RESUMO

Frequent emergency department (ED) utilization is an indicator of unmet health and social needs, especially among patients with mental and physical health problems. The authors aimed to characterize frequent ED utilizers and drivers of multiple ED use, including presence of serious mental illness (SMI), across 2 large health care systems in Northern California. Using electronic health records and a data-sharing platform, a cross-sectional analysis was conducted of patients aged 18+ years with ≥10 ED visits in 2016. Logistic regression was used to determine factors associated with multiple ED use versus single ED use. Among the 8036 patients who met inclusion criteria, the mean age was 55.9 years (95% CI = 55.5-56.4), 53% were female, 54% were non-Hispanic white, and 38% had any SMI. Overall, 51% of patients were single ED utilizers. Patients ages ≥65 years were less likely to use multiple EDs compared to younger patients (ages 18-23) (OR = 0.3, 95% CI = 0.2-0.4). African Americans exhibited more than 3 times the likelihood of multi-ED use compared to non-Hispanic whites (OR = 3.8, 95% CI = 3.3-4.3). A diagnosis of any SMI (OR = 2.3 [95% CI: 2.1-2.6]), major depressive disorder (OR = 1.3, 95% CI = 1.1-1.4), schizophrenia (OR = 2.1, 95% CI = 1.6-2.6), or suicidal attempts/ideation (OR = 2.7, 95% CI = 2.1-3.6) was significantly associated with increased likelihood of multi-ED use. Findings indicate heterogeneity in regional utilization patterns among frequent ED utilizers, with mental illness increasing the likelihood of multi-ED use.


Assuntos
Transtorno Depressivo Maior , Transtornos Mentais , Adolescente , Adulto , Idoso , Estudos Transversais , Serviço Hospitalar de Emergência , Feminino , Humanos , Modelos Logísticos , Transtornos Mentais/epidemiologia , Transtornos Mentais/terapia , Pessoa de Meia-Idade , Adulto Jovem
13.
Ethn Dis ; 30(Suppl 1): 137-148, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-32269455

RESUMO

Background: In order for precision health to address health disparities, engagement of diverse racial/ethnic minority communities and the physicians that serve them is critical. Methods: A community-based participatory research approach with mixed methods was employed to gain a deeper understanding of precision health research and practice among American Indian, African American, Latino, Chinese, and Vietnamese groups and physicians that serve these communities. A survey assessed demographics and opinions of precision health, genetic testing, and precision health research. Focus groups (n=12) with each racial/ethnic minority group and physicians further explored attitudes about these topics. Results: One hundred community members (American Indian [n=17], African American [n=13], Chinese [n=17], Latino [n=27], and Vietnamese [n=26]) and 14 physicians completed the survey and participated in the focus groups. Familiarity with precision health was low among community members and high among physicians. Most groups were enthusiastic about the approach, especially if it considered influences on health in addition to genes (eg, environmental, behavioral, social factors). Significant concerns were expressed by African American and American Indian participants about precision health practice and research based on past abuses in biomedical research. In addition, physician and community members shared concerns such as security and confidentiality of genetic information, cost and affordability of genetic tests and precision medicine, discrimination and disparities, distrust of medical and research and pharmaceutical institutions, language barriers, and physician's specialty. Conclusions: Engagement of racial/ethnic minority communities and the providers who serve them is important for advancing a precision health approach to addressing health disparities.


Assuntos
Etnicidade/estatística & dados numéricos , Grupos Minoritários/estatística & dados numéricos , Relações Médico-Paciente/ética , Medicina de Precisão/ética , Atitude do Pessoal de Saúde , Pesquisa Participativa Baseada na Comunidade , Feminino , Grupos Focais , Humanos , Masculino , Competência Profissional
14.
Women Birth ; 31(5): 386-397, 2018 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-29198501

RESUMO

BACKGROUND: Women's mental health in the perinatal period is understudied worldwide and in Arab countries especially. AIM: This systematic review explores evidence of the association between women's social resources for empowerment in the Arab World and their mental health in the prenatal and postnatal (≤1year postpartum) periods. METHODS: Guided by Kabeer's framework of empowerment, the authors applied a search string in PubMed and Web of Science databases to identify studies in countries of the Arab League (hereafter the Arab World) that address mental health and social resources for women's empowerment in the perinatal period. FINDINGS: Of 1865 electronically retrieved articles, 23 met the inclusion criteria. Overall, the majority of studies found a positive association between social resources for empowerment and perinatal mental health. Seven studies explored the relationship between familial or general social support and prenatal mental health in Arab women, and found a significant positive association. Sixteen of the 18 studies of women in the postnatal period found that enabling familial, extra-familial, and/or general social support was positively associated with mental health. CONCLUSION: This review demonstrates an association between social resources and perinatal mental health, but there is a dearth of research in this area. We call for additional research on Arab women in the perinatal period using context-specific but standardized tools to assess social resources and mental health. Evidence on positive mental health, resilience, and the influence of social resources can guide the improvement of prenatal and postpartum care services.


Assuntos
Saúde Mental , Poder Psicológico , Apoio Social , Árabes , Feminino , Humanos , Período Pós-Parto , Gravidez , Saúde da Mulher
15.
J Empir Res Hum Res Ethics ; 12(5): 352-362, 2017 12.
Artigo em Inglês | MEDLINE | ID: mdl-28905673

RESUMO

Informed consent requirements for conducting research with human participants are set by institutional review boards (IRBs) following established guidelines. Despite this, researchers continue to face challenges in seeking and obtaining informed consent. This study discusses researchers' views of such problems in Lebanon and Qatar, which vary in research regulation. We conducted in-depth interviews with 52 academic researchers from various fields of research in both countries and analyzed them using thematic analysis. Important disjunctions emerged between IRB requirements and actual practice. Variations in obtaining informed consent were affected by the research context, type of research, and the prevalent cultural norms and values. Regulatory systems and guidelines for informed consent do not necessarily ensure ethical research conduct. Implications for improvement are presented.


Assuntos
Atitude , Pesquisa Biomédica/ética , Comitês de Ética em Pesquisa , Consentimento Livre e Esclarecido/ética , Pesquisadores , Pesquisa Biomédica/legislação & jurisprudência , Cultura , Ética em Pesquisa , Humanos , Consentimento Livre e Esclarecido/legislação & jurisprudência , Líbano , Catar , Pesquisa Qualitativa
16.
J Empir Res Hum Res Ethics ; 9(5): 25-35, 2014 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-25747688

RESUMO

A recent surge of research universities and human subjects research funding in the Arab world raises concerns about applied research ethics and oversight. In-depth interviews conducted with 52 researchers in Lebanon and Qatar about their research conduct and the problems they face while conducting it indicate that although researchers admit to the added value of institutional review board (IRB) functions, the researchers have several complaints, such as rigid and contextually insensitive requirements, delays, and inadequate resources at IRBs, and a lack of outreach and effective communication with researchers. The study discusses these challenges pointing to the need for socioculturally adaptive regulations and forms and strengthening outreach and communication between IRBs and their users to improve ethical practices. Implications for future research are also presented.


Assuntos
Atitude , Comitês de Ética em Pesquisa , Ética em Pesquisa , Pesquisadores/ética , Pesquisa , Árabes , Ciências do Comportamento/ética , Pesquisa Biomédica/ética , Necessidades e Demandas de Serviços de Saúde , Experimentação Humana/ética , Humanos , Líbano , Catar , Universidades
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