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1.
J Natl Med Assoc ; 116(1): 45-55, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-38151424

RESUMO

OBJECTIVE: Improving current and future risk communication plans is critical to mitigate the COVID-19 pandemic and begin to prepare for future pandemics. Minority groups, particularly African Americans, have been limited in engagement to prepare these plans which has been demonstrated to be disadvantageous. We report findings from a qualitative study that describes gaps, needs, and strategies to improve communication among vulnerable, Black American subgroups during the COVID-19 pandemic. METHODS: Sixty-two Black Americans in uniquely, vulnerable subgroups participated in qualitative, semi-structured interviews from May to September 2020. Thematic analyses were used to identify themes. RESULTS: Participants were 16 essential workers, 16 parents, 15 young adults, and 15 individuals with underlying medical conditions. Emerging themes were: (1) Poor communication and miscommunication fueled fear and confusion; (2) Information sources and channels: How do I choose one?; (3) Communication needs were simple yet complex; (4) All information sources are not trusted information sources; (5) Preferred yet trusted channels and types of information; and (6) Dissemination of COVID Research: Why and How. Subgroups varied in information sources and processes for choosing the source, communication needs, and channels and types of information needed. They shared why they did and did not trust certain sources along with the importance of COVID research dissemination to promote informed decision-making throughout the pandemic. DISCUSSION: This study found that Black American subgroups had diverse, yet trusted and non-trusted messages, messengers, and strategies for communication and wanted research results disseminated. We describe multi-level stakeholders and strategies to help improve risk communication for pandemics, and potentially preparedness and health outcomes.


Assuntos
Negro ou Afro-Americano , COVID-19 , Preparação para Pandemia , Humanos , Adulto Jovem , Comunicação , COVID-19/epidemiologia , COVID-19/prevenção & controle , Pandemias , Comunicação em Saúde , Necessidades e Demandas de Serviços de Saúde , Populações Vulneráveis , Pesquisa Qualitativa
2.
JMIR Hum Factors ; 10: e47294, 2023 12 22.
Artigo em Inglês | MEDLINE | ID: mdl-37874735

RESUMO

BACKGROUND: COVID-19 remains an ongoing public health crisis. Black Americans remain underrepresented among those vaccinated and overrepresented in both COVID-19 morbidity and mortality. Medical misinformation, specifically related to COVID-19, has exacerbated the impact of the disease in Black American communities. Communication tools and strategies to build relationships and disseminate credible and trustworthy diagnostic and preventative health information are necessary to improve outcomes and equity for historically oppressed populations. OBJECTIVE: As the initial phase of a larger mixed methods project to develop, pilot, and evaluate a mobile health (mHealth) intervention among a population at high risk for COVID-19 and cardiovascular comorbidities, this study sought to explore COVID-19 information behavior among Black Americans. Specifically, this study examined (1) preferences for COVID-19 education via mHealth, (2) barriers and facilitators to COVID-19 education and diagnostic testing and routine care for associated cardiovascular and respiratory comorbidities in the local community, and (3) key content for inclusion in a COVID-19 mHealth app. METHODS: This qualitative study used principles of community-based participatory research and information systems research to conduct 7 focus groups across 3 sites. Focus groups were audio recorded and transcribed for thematic analysis using an abductive approach. RESULTS: The study sample included 54 individuals across sites with a mean age of 50.24 (SD 11.76; range 20-71) years. Participants were primarily female (n=42, 78%) and Black (n=54, 100%) with varied education levels. Over half (n=29, 54%) of the participants were employed full-time, and nearly three-fourths (n=40, 74%) had household incomes

Assuntos
Negro ou Afro-Americano , COVID-19 , Telemedicina , Feminino , Humanos , Pessoa de Meia-Idade , COVID-19/epidemiologia , Escolaridade , Síndrome de COVID-19 Pós-Aguda , Masculino , Adulto Jovem , Adulto , Idoso
3.
Children (Basel) ; 10(9)2023 Sep 14.
Artigo em Inglês | MEDLINE | ID: mdl-37761510

RESUMO

(1) Background: The study's purpose was to explore the knowledge, perceptions, and confidence of mothers about infant care to reduce the risk of sudden unexpected infant death. (2) Methods: A purposeful sampling method was used to recruit 15 first-time mothers from Georgia with infants under 1 year of age. The researchers utilized the Socio-ecological model to report the results. Participants also provided recommendations on how to improve infant care and reduce the risk of SUID. (3) Results: The confidence level of infant care among most participants was low but increased over time. Mothers' knowledge level about the prevention of SUID was high, but poor emotional health could hurt their parental abilities. Most participants recognized medical providers as the main source of reliable information. However, a lack of emotional and physical support was reported by mothers. (4) Conclusions: Results suggested that a more holistic approach to infant care is needed. The healthcare system and communities should provide more physical, social, and mental support to first-time mothers, a consolidated approach to care before and after birth, and easy access to services at all stages of the process to reduce the risk of SUID.

4.
J Nutr Metab ; 2023: 2845133, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-36915292

RESUMO

Child malnutrition persists in low-resource countries such as Pakistan, indicating an urgent need for interventions and policies aimed to address this critical population health issue. The World Health Organization Global Target 2025 includes the reduction of malnourishment in the form of stunting, wasting, and low weight. This study aims to examine the prevalence of factors associated with three measures of child malnutrition, i.e., stunting, wasting, and low weight in Pakistan. This study uses a secondary data analysis design based on data from Pakistan Demographic and Health Survey (2017-18) that used a two-stage cluster sampling approach. National level data covering urban and rural areas were used for this study consisting of 4,226 children less than 5 years of age. Univariate and multivariable analyses using logistic regression models were conducted. Over 23% of the children were underweight, 8.0% suffered wasting, and 37.7% were stunted. Children with small size at birth (<45.7 cm), those who were average in size (45.7 to 60 cm) at birth were less likely to be stunted (AOR, 0.4890) and underweight (AOR, 0.538). Children with large size at birth (>60 cm) were also less likely to be stunted (AOR, 0.288) and underweight (AOR, 0.538). Children who consumed fresh milk were less likely to be classified as wasted (AOR, 0.524) than those children who did not consume fresh milk. The children in high- and middle-economic status families were less likely to be stunted, underweight, or wasted. Children of mothers who had secondary and higher education were less likely to be stunted (AOR, 0.584) and were less likely to be underweight (AOR, 0.668) than illiterate mothers' children. Children of working mothers were less likely to be wasted compared to children of nonworking mothers (AOR, 0.287). Maternal BMI is also inversely associated with being underweight because overweight and obese mothers were less likely to have underweight children (AOR, 0.585). Our findings reflect a need to design targeted public health policies and community-based education that emphasize the mother's education on nutrition health and provide socioeconomic resources that enable mothers to provide dietary needs that prevent malnutrition.

5.
Public Health Nutr ; 26(5): 994-1005, 2023 05.
Artigo em Inglês | MEDLINE | ID: mdl-36645262

RESUMO

OBJECTIVE: This study examined relationships between dimensions of social capital (SC) (social trust, network diversity, social reciprocity and civic engagement) and fruit, vegetable, and sugar-sweetened beverage (SSB) consumption among rural adults. Potential moderators (neighbourhood rurality, food security, gender and race/ethnicity) were explored to develop a more nuanced understanding of the SC-healthy eating relationship. DESIGN: Data were from a 2019 mailed population-based survey evaluating an eleven-county initiative to address health equity. Participants self-reported health behaviours, access to health-promoting resources and demographics. Logistic regression models were used to analyse relationships between predictors, outcomes and moderators. SETTING: Five rural counties, Georgia, USA. PARTICIPANTS: 1120 participants. RESULTS: Among participants who lived in the country (as opposed to in town), greater network diversity was associated with consuming ≥ 3 servings of fruit (OR = 1·08; 95 % CI 1·01, 1·17, P = 0·029), yet among participants who lived in town, greater civic engagement was associated with consuming ≥ three servings of fruit (OR = 1·36; 95 % CI 1·11, 1·65, P = 0·003). Both food-secure and food-insecure participants with greater social reciprocity had lower odds of consuming 0 SSB (OR = 0·92; 95 % CI 0·86, 0·98, P = 0·014, OR = 0·92; 95 % CI 0·86, 0·99, P = 0·037, respectively). Men with greater social trust were more likely to consume 0 SSB (OR = 1·09; 95 % CI 1·01, 1·18, P = 0·038), and Whites with greater network diversity were more likely to meet daily vegetable recommendations (OR = 1·10; 95 % CI 1·01, 1·19, P = 0·028). CONCLUSIONS: Findings provide a basis for future qualitative research on potential mechanisms through which SC and related social factors influence healthy eating in rural communities.


Assuntos
Dieta Saudável , Capital Social , Adulto , Masculino , Humanos , População Rural , Frutas , Verduras , Comportamento Alimentar , Bebidas
6.
Transl Behav Med ; 12(1)2022 01 18.
Artigo em Inglês | MEDLINE | ID: mdl-34244808

RESUMO

Dissemination of research findings to past research participants and the community-at-large is a critical element to improving health outcomes, yet it is often overlooked by researchers. Few studies have explored how to provide study findings to the community, and no studies have investigated how community members can be involved in this process. This study explored views on the broad dissemination of research findings to community members and the role of the community in the dissemination process. We conducted a comparative analysis from the perspective of researchers, community members, and program officers (POs) from national health research funding agencies. Semistructured interviews were conducted with community members (African American, N = 10; Latino, N = 10), academic researchers (N = 10), and POs (N = 5). Thematic analysis was utilized in which codes and themes were created. One cross-cutting theme was identified, Views on Disseminating Research Findings to Communities. There were three additional themes identified among community members, five among researchers, and four among POs. All groups perceived the value of dissemination to communities as meaningful and ethical. Groups differed in their perceptions of prioritization of dissemination audiences. This study highlighted consensus on the value of broad dissemination to the community-at-large and identified areas of insufficiency in the translational research continuum that could be expanded or improved to ensure targeted groups receive the intended benefits of positive research findings. The long-term benefit of disseminating findings to the community-at-large is increased acceptability of interventions and reduced mistrust in research and researchers.


Assuntos
Pesquisadores , Pesquisa Translacional Biomédica , Negro ou Afro-Americano , Humanos
7.
JMIR Form Res ; 5(11): e28678, 2021 Nov 30.
Artigo em Inglês | MEDLINE | ID: mdl-34851295

RESUMO

BACKGROUND: Individuals with sickle cell disease (SCD) and their caregivers may benefit from technology-based resources to improve disease self-management. OBJECTIVE: This study explores the preferences regarding a mobile health (mHealth) app to facilitate self-management in adults with SCD and their caregivers living in urban and rural communities. METHODS: Five community listening sessions were conducted in 2 urban and rural communities among adults with SCD and their caregivers (N=43). Each session comprised 4 to 15 participants. Participants were asked questions on methods of finding information about SCD self-care, satisfaction with current methods for finding SCD management information, support for SCD management, important features for development of an mHealth app, and areas of benefit for using an mHealth app for SCD self-management. An inductive-deductive content analysis approach was implemented to identify the critical themes. RESULTS: Seven critical themes emerged, including the current methods for receiving self-management information, desired information, recommendations for communicating sickle cell self-management information, challenges of disease management, types of support received for disease management, barriers to and facilitators of using an mHealth app, and feature preferences for an mHealth app. In addition, we found that the participants were receptive to using mHealth apps in SCD self-management. CONCLUSIONS: This study expands our knowledge on the use of mHealth technology to reduce information access barriers pertaining to SCD. The findings can be used to develop a patient-centered, user-friendly mHealth app to facilitate disease self-management, thus increasing access to resources for families of patients with SCD residing in rural communities.

8.
Am J Health Educ ; 52(4): 194-206, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-34239655

RESUMO

BACKGROUND: The Healthy Men, Health Communities program aims to improve preventive behaviors among African American men to reduce HPV-related cancer disparities. PURPOSE: We describe the development of an educational intervention using cultural-targeting strategies (i.e., linguistics, peripherals, evidence, socio-culture, and constituent-involving). METHODS: After building capacity of community-based organization (CBO) leaders as research team members, we conducted 3 focus groups, 30 surveys, and a community review and program evaluation with African American men. RESULTS: Focus group themes were: 1) The Known and Unknown of Cancer, HPV, and the vaccine; (2) Personal experiences with cancer were commonplace; (3) Barriers to Engaging HPV Cancer Preventive Behaviors; (4) Multi-Modal Strategies are needed to improve preventive behaviors; and (5) Actual versus Preferred Sources of Information. Survey data indicated men desired information on penile (52%) and oral cancers (48%). The preferred education format was a summit with speakers on various topics (96%). Post-summit evaluation indicated majority of males intended to get screened (73%), eat healthier (77%), and exercise more (64%). About 40% reported getting themselves, children, or grandchildren the HPV vaccine. DISCUSSION: Our program demonstrated acceptability, feasibility, and preliminary efficacy. This work warrants further study as a potential program to improve HPV preventive behaviors among African American men.

9.
Cancer Causes Control ; 32(9): 953-963, 2021 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-34046808

RESUMO

AIM: Culturally-appropriate, educational programs are recommended to improve cancer clinical trial participation among African Americans and Latinos. This study investigated the effect of a culturally-appropriate, educational program on knowledge, trust in medical researchers, and intent for clinical trial participation among African Americans and Latinos in Middle Tennessee. METHOD: Trained community health educators delivered a 30-min presentation with video testimonials to 198 participants in 13 town halls. A pre-post survey design was used to evaluate the intervention among 102 participants who completed both pre- and post-surveys one to two weeks after the session. RESULTS: Paired-sample t-test showed significant increases in unadjusted mean scores for knowledge (p < 0.001), trust in medical researchers (p < 0.001), and willingness to participate in clinical trials (p = 0.003) after the town halls in the overall sample. After adjusting for gender and education, all three outcomes remained significant for the overall sample (knowledge: p < 0.001; trust in medical researchers: p < 0.001; willingness: p = 0.001) and for African Americans (knowledge: p < 0.001; trust in medical researchers: p = 0.007; willingness: p = 0.005). However, willingness to participate was no longer significant for Latinos (knowledge: p < 0.001; trust in medical researchers: p = 0.034; willingness: p = 0.084). CONCLUSIONS: The culturally-appropriate, educational program showed promising results for short-term, clinical trial outcomes. Further studies should examine efficacy to improve research participation outcomes.


Assuntos
Negro ou Afro-Americano , Hispânico ou Latino , Neoplasias , Ensaios Clínicos como Assunto , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Neoplasias/epidemiologia , Neoplasias/terapia , Projetos Piloto , Inquéritos e Questionários
10.
BMC Public Health ; 20(1): 840, 2020 Jun 03.
Artigo em Inglês | MEDLINE | ID: mdl-32493245

RESUMO

BACKGROUND: Addressing knowledge deficiencies about cancer clinical trials and biospecimen donation can potentially improve participation among racial and ethnic minorities. This paper describes the formative research process used to design a culturally-appropriate cancer clinical trials education program for African American and Latino communities. We characterized community member feedback and its integration into the program. METHODS: We incorporated three engagement approaches into the formative research process to iteratively develop the program: including community-based organization (CBO) leaders as research team members, conducting focus groups and cognitive interviews with community members as reviewers/consultants, and interacting with two community advisory groups. An iterative-deductive approach was used to analyze focus group data. Qualitative data from advisory groups and community members were compiled and used to finalize the program. RESULTS: Focus group themes were: 1) Community Perspectives on Overall Presentation; 2) Community Opinions and Questions on the Content of the Presentation; 3) Culturally Specific Issues to Participation in Cancer Clinical Trials; 4) Barriers to Clinical Trial Participation; and 5) Perspectives of Community Health Educators. Feedback was documented during reviews by scientific experts and community members with suggestions to ensure cultural appropriateness using peripheral, evidential, linguistic, sociocultural strategies, and constituent-involving. The final program consisted of two versions (English and Spanish) of a culturally-appropriate slide presentation with speaker notes and videos representing community member and researcher testimonials. CONCLUSIONS: Incorporating multiple community engagement approaches into formative research processes can facilitate the inclusion of multiple community perspectives and enhance the cultural-appropriateness of the programs designed to promote cancer clinical trial participation among African Americans and Latinos.


Assuntos
Negro ou Afro-Americano/educação , Ensaios Clínicos como Assunto/psicologia , Assistência à Saúde Culturalmente Competente/métodos , Educação em Saúde/métodos , Hispânico ou Latino/educação , Sujeitos da Pesquisa/educação , Adulto , Negro ou Afro-Americano/psicologia , Idoso , Pesquisa Participativa Baseada na Comunidade , Feminino , Grupos Focais , Hispânico ou Latino/psicologia , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias , Pesquisa Qualitativa , Sujeitos da Pesquisa/psicologia
11.
Health Expect ; 23(4): 958-968, 2020 08.
Artigo em Inglês | MEDLINE | ID: mdl-32452067

RESUMO

BACKGROUND: Dissemination of research findings to past study participants and the community-at-large is important. Yet, a standardized process for research dissemination is needed to report results to the community. OBJECTIVE: We developed a framework and strategies to guide community-academic partnerships in community-targeted, dissemination efforts. METHODS: From 2017 to 2019, a community-academic partnership was formed in Nashville, Tennessee, and iteratively developed a framework and strategies for research dissemination using cognitive interviews. A deductive, constant comparative analysis was conducted on interview responses to examine framework and strategy content. Feedback was used to finalize the framework and strategies for the evaluation. Using existing data, the framework's utility was evaluated in seven town hall meetings (n = 117). Bivariate analyses determined its effect on community members' trust and willingness to participate in research using pre- and post-surveys. Evaluation results were used to finalize the framework. RESULTS: The Community-Engaged Research Dissemination (CERD) framework has two phases. Phase one is a preliminary planning phase with two steps, and phase two is the four-step dissemination process. There are five standards to be upheld conducting these phases. We provide competencies for each component. Three feasible, culturally adapted strategies were developed as exemplars to disseminate research findings. Using pre- and post-surveys for intervention evaluation, there was a significant difference in trust in medical research and researchers (P = .006) and willingness to participate in research (P = .013). DISCUSSION AND CONCLUSION: The CERD framework can potentially standardize the process and compare the effect of dissemination efforts on the community's trust and willingness to participate in research.


Assuntos
Pesquisa Biomédica , Pesquisadores , Humanos , Inquéritos e Questionários , Confiança
12.
J Relig Health ; 59(6): 3110-3125, 2020 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-32447507

RESUMO

The incidence of depression in individuals with sickle cell disease (SCD) is significantly higher compared to the general population. This systematic literature review was conducted to: (1) describe depressive symptoms in SCD individuals and (2) explore religiosity as a coping mechanism for alleviating depressive symptoms. Emerging themes were physical depressive symptoms and psychosocial depressive implications. Despite uptake of religion and religiosity as a coping strategy in other chronic illnesses, no studies were found that used religiosity to cope with depressive symptoms in SCD. Future research should explore the use of religiosity as an alternative therapy to cope with depression symptoms.


Assuntos
Anemia Falciforme/complicações , Anemia Falciforme/terapia , Depressão/psicologia , Religião e Psicologia , Religião , Espiritualidade , Adaptação Psicológica , Anemia Falciforme/psicologia , Doença Crônica , Depressão/etiologia , Humanos
13.
J Health Care Poor Underserved ; 31(1): 353-369, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-32037336

RESUMO

Developing innovative strategies to engage patients as research partners is a priority in efforts to reduce health disparities in underserved communities. We describe the development and implementation of a training model to prepare Community Health Ambassadors (CHAs) to serve as liaisons to engage individuals with sickle cell disease (SCD) in patient-centered outcomes research. We trained CHAs on research guidelines, human subjects' protection, and SCD self-management. Community Health Ambassadors then employed community-level strategies to engage individuals with SCD and their families (N=432) residing in rural and urban communities throughout Tennessee. By engaging the SCD community, CHAs identified areas of burden for self-management and patientpreferred strategies to engage members of underserved minority groups in research. This community-based training model, which places CHAs as liaisons between researchers and the community, holds promise for scaling-up for replication and implementation in studies seeking to engage underserved populations with a chronic disease in health research.


Assuntos
Anemia Falciforme , Agentes Comunitários de Saúde/educação , Avaliação de Resultados da Assistência ao Paciente , Adulto , Serviços de Saúde Comunitária , Pesquisa Participativa Baseada na Comunidade , Educação/organização & administração , Feminino , Humanos , Masculino , Área Carente de Assistência Médica , Pessoa de Meia-Idade , Tennessee , Adulto Jovem
14.
J Genet Couns ; 28(4): 812-821, 2019 08.
Artigo em Inglês | MEDLINE | ID: mdl-30969464

RESUMO

Benefits of identifying sickle cell disease (SCD) carriers include detection of at-risk couples who may be informed on reproductive choices. Studies consistently report insufficient knowledge about the genetic inheritance pattern of SCD among people with sickle cell trait (SCT). This study explored perspectives of adults with SCT on the information needed to make an informed reproductive decision and the recommendations for communicating SCT information. Five focus groups (N = 25) were conducted with African Americans with SCT ages 18-65 years old. Participants were asked about their knowledge of SCT, methods for finding information on SCT, impact of SCT on daily living, and interactions with healthcare providers. An inductive-deductive qualitative analysis was used to analyze the data for emerging themes. Four themes emerged, highlighting the unmet information needs of African American sickle cell carriers: (a) SCT and SCD Education; (b) information sources; (c) improved communication about SCT and SCD; and (d) increased screening strategies. Future studies are needed to determine effective strategies for communicating SCT information and to identify opportunities for education within community and medical settings. Identifying strategies to facilitate access to SCT resources and education could serve as a model for meeting unmet information needs for carriers of other genetic conditions.


Assuntos
Anemia Falciforme/genética , Triagem de Portadores Genéticos , Conhecimentos, Atitudes e Prática em Saúde , Traço Falciforme/diagnóstico , Adolescente , Adulto , Negro ou Afro-Americano/genética , Idoso , Anemia Falciforme/diagnóstico , Tomada de Decisões , Feminino , Grupos Focais , Humanos , Masculino , Pessoa de Meia-Idade , Fenótipo , Adulto Jovem
15.
Psychol Health Med ; 24(6): 691-702, 2019 07.
Artigo em Inglês | MEDLINE | ID: mdl-30628468

RESUMO

Parental trust in medical researchers is a commonly cited barrier to their child's participation in clinical research. Yet, there is little understanding of factors influencing parental trust to be implemented in interventions to address their concerns. This study seeks to identify psychosocial and modifying factors influencing parental trust in medical researchers to improve child and adolescent patients clinical trial participation, and potentially their health outcomes. We conducted a cross-sectional study with 307 parents. Multiple ordinary linear (OLS) regression was conducted to determine: (1) psychosocial and modifying factors associated with parental trust; and (2) perceived advantages and disadvantages associated with parental trust. Parent's race (White) (ß = .343, p < .001), higher education level (ß = .409, p < .001), higher perceived advantages of adolescent clinical trials (ß = .142, p < .001), and lower perceived disadvantages of adolescent clinical trials (ß = -.337, p = .001) were the most significant predictors of higher levels of parental trust in medical researchers. Parents who were African American and had lower education levels expressed lower levels of trust in medical researchers. Education on the benefits of clinical trials could reduce parents' apprehension towards their child's participation in clinical trials. Results support the development of a clinical trial education program for parents to improve their trust in medical researchers.


Assuntos
Ensaios Clínicos como Assunto/psicologia , Pais/psicologia , Participação do Paciente/psicologia , Relações Pesquisador-Sujeito/psicologia , Confiança/psicologia , Adolescente , Adulto , Negro ou Afro-Americano/psicologia , Criança , Estudos Transversais , Feminino , Humanos , Masculino
16.
Pediatr Blood Cancer ; 66(2): e27507, 2019 02.
Artigo em Inglês | MEDLINE | ID: mdl-30387236

RESUMO

OBJECTIVE: The study objective was to identify the perceptions of children with sickle cell disease (SCD) in the school environment. METHODS: Semistructured interviews (N = 14) were conducted with pediatric patients ages 6 to 10 who attended Metro Nashville Public Schools. These participants were recruited through the Vanderbilt Sickle Cell Disease Clinic. Participants were asked about the perceived efficacy of their teachers to (1) understand SCD; (2) communicate with students regarding SCD; (3) handle an SCD-related pain episode in school; and (4) identify methods to compensate for school absenteeism associated with an SCD diagnosis. Content analysis identified underlying themes. RESULTS: Five themes emerged that highlighted the perceptions and recommendations of children with SCD in the school environment: (1) perceptions that allow students to prevent SCD from limiting their school experience; (2) administrator actions to alleviate challenges associated with SCD; (3) communication about SCD; (4) how SCD interferes with school activities; and (5) ways students advocate for themselves. Students also provided four areas of recommendations for school personnel: (1) ways teachers can help with school activities; (2) make-up work for school absences; (3) empowering students with SCD; and (4) helping with SCD episodes at school. CONCLUSIONS: Students with SCD advocated strongly for their needs at school to attain their education. However, they perceived school personnel to lack knowledge about SCD management. This could be overcome with a handbook specific for teachers of students with SCD that could address each of the five themes.


Assuntos
Anemia Falciforme , Conhecimentos, Atitudes e Prática em Saúde , Percepção , Professores Escolares , Estudantes , Criança , Feminino , Humanos , Masculino , Instituições Acadêmicas
17.
Prev Chronic Dis ; 15: E149, 2018 12 06.
Artigo em Inglês | MEDLINE | ID: mdl-30522584

RESUMO

Little is known about the influence of personal health history and depression self-care practices on screening for depression by health care providers among African Americans with chronic conditions. African Americans (N = 203) aged 18 years or older and living with at least one chronic health condition in a metropolitan city completed a 45-item community perceptions survey. The number of depression symptoms experienced per month was positively associated with screening for depression by a health care provider; perceived ability to identify depression symptoms was inversely associated with screening by a health care provider. Understanding patients' health history and self-care practices can initiate provision of information or support services to improve patient-provider communication about depression.


Assuntos
Negro ou Afro-Americano , Depressão/diagnóstico , Comportamento de Busca de Ajuda , Relações Profissional-Paciente , Adulto , Negro ou Afro-Americano/estatística & dados numéricos , Idoso , Doença Crônica/epidemiologia , Doença Crônica/psicologia , Estudos Transversais , Depressão/etnologia , Depressão/psicologia , Feminino , Humanos , Indiana , Modelos Logísticos , Masculino , Pessoa de Meia-Idade , Escalas de Graduação Psiquiátrica , Autocuidado/estatística & dados numéricos , Inquéritos e Questionários
18.
BMC Hematol ; 18: 12, 2018.
Artigo em Inglês | MEDLINE | ID: mdl-29977566

RESUMO

BACKGROUND: Evidence-based guidelines for sickle cell disease (SCD) health maintenance and management have been developed for primary health care providers, but not for individuals with SCD. To improve the quality of care delivered to individuals with SCD and their caregivers, the main purposes of this study were to: (1) understand the desire for patient-centered guidelines among the SCD community; and (2) adapt guideline material to be patient-centered using community-engagement strategies involving health care providers, community -based organizations, and individuals with the disease. METHODS: From May-December 2016, a volunteer sample of 107 individuals with SCD and their caregivers gave feedback at community forums (n = 64) and community listening sessions (n = 43) about technology use for health information and desire for SCD-related guidelines. A team of community research partners consisting of community stakeholders, individuals living with SCD, and providers and researchers (experts) in SCD at nine institutions adapted guidelines to be patient-centered based on the following criteria: (1) understandable, (2) actionable, and (3) useful. RESULTS: In community forums (n = 64), almost all participants (91%) wanted direct access to the content of the guidelines. Participants wanted guidelines in more than one format including paper (73%) and mobile devices (79%). Guidelines were adapted to be patient-centered. After multiple iterations of feedback, 100% of participants said the guidelines were understandable, most (88%) said they were actionable, and everyone (100%) would use these adapted guidelines to discuss their medical care with their health care providers. CONCLUSIONS: Individuals with SCD and their caregivers want access to guidelines through multiple channels, including technology. Guidelines written for health care providers can be adapted to be patient-centered using Community-engaged research involving providers and patients. These patient-centered guidelines provide a framework for patients to discuss their medical care with their health care providers.

19.
J Am Med Inform Assoc ; 25(8): 976-988, 2018 08 01.
Artigo em Inglês | MEDLINE | ID: mdl-29741695

RESUMO

Objective: Sickle cell disease (SCD) is a chronic condition affecting over 100 000 individuals in the United States, predominantly from vulnerable populations. Clinical practice guidelines, written for providers, have low adherence. This study explored knowledge about guidelines; desire for guidelines; and how technology could support guideline awareness and adherence, examining current technology uses, and user preferences to inform design of a patient-centered guidelines application in a chronic disease. Methods: This cross-sectional mixed-methods study involved semi-structured interviews, surveys, and focus groups of adolescents and adults with SCD. We evaluated interest, preferences, and anticipated benefits or barriers of a patient-centered adaptation of SCD practice guidelines; prospective technology uses for health; and barriers to technology utilization. Results: Forty-seven individuals completed surveys and interviews, and 39 participated in three separate focus groups. Most participants (91%) were unaware of SCD guidelines, but almost all (96%) expressed interest in a guidelines application, identifying benefits (knowledge, activation, individualization, and rewards), and barriers (poor information, low motivation, and resource limitations). Current technology health uses included information access, care coordination, and reminders about health-related actions. Prospective technology uses included informational messaging and timely alerts. Barriers to technology use included lack of interest, lack of utility, and preference for direct communication. Conclusions: This study's findings can inform the design of clinical practice guideline applications, suggesting a promising role for technology to engage patients, facilitate care decisions and actions, and improve outcomes.


Assuntos
Anemia Falciforme , Fidelidade a Diretrizes , Cooperação do Paciente , Guias de Prática Clínica como Assunto , Adolescente , Adulto , Idoso , Estudos Transversais , Feminino , Grupos Focais , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Assistência Centrada no Paciente , Fatores Socioeconômicos , Estados Unidos , Adulto Jovem
20.
J Genet Couns ; 27(5): 1302-1311, 2018 09.
Artigo em Inglês | MEDLINE | ID: mdl-29574538

RESUMO

Guidelines recommend that African Americans know their sickle cell trait status to inform reproductive health decisions. Few studies have applied a behavioral theory to identify factors associated with sickle cell trait screening to inform intervention targets to increase this behavior. We applied a Sickle Cell Trait Screening Framework to identify factors associated with African Americans' intention to ask for sickle cell trait screening. Participants (N = 300), ages 18 to 35, completed a cross-sectional survey. A three-step sequential ordinary least squares regression analysis identified factors influencing intention. Results indicated socio-demographic factors (age, education), knowledge and fear beliefs (screening knowledge, perceived threat), and reasoned action approach (RAA) constructs were associated with intention. RAA constructs influenced intention over knowledge and fear beliefs with an increase in R2 of .468. Perceived behavioral control was more predictive of intention (ß = .576, p < .001). Attitude and perceived norm also had significant weights (ß = .325 and ß = .192, both p < .001, respectively). Findings from this study can inform strategies (e.g., eliminating costs associated with screening, reducing fear of painful tests) to increase sickle cell trait screening among African Americans. Ultimately, more sickle cell carriers will become aware of their trait status and be able to make informed reproductive health decisions.


Assuntos
Anemia Falciforme/genética , Negro ou Afro-Americano/genética , Negro ou Afro-Americano/psicologia , Tomada de Decisões , Testes Genéticos , Reprodução , Adolescente , Adulto , Estudos Transversais , Feminino , Aconselhamento Genético , Humanos , Masculino , Gravidez , Reprodutibilidade dos Testes , Saúde Reprodutiva , Traço Falciforme/genética , Adulto Jovem
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