RESUMO
BACKGROUND: Respect is essential to providing high quality healthcare, particularly for groups that are historically marginalized and stigmatized. While ethical principles taught to health professionals focus on patient autonomy as the object of respect for persons, limited studies explore patients' views of respect. The purpose of this study was to explore the perspectives of a multiculturally diverse group of low-income women living with HIV (WLH) regarding their experience of respect from their medical physicians. METHODS: We analyzed 57 semi-structured interviews conducted at HIV case management sites in South Florida as part of a larger qualitative study that explored practices facilitating retention and adherence in care. Women were eligible to participate if they identified as African American (n = 28), Hispanic/Latina (n = 22), or Haitian (n = 7). They were asked to describe instances when they were treated with respect by their medical physicians. Interviews were conducted by a fluent research interviewer in either English, Spanish, or Haitian Creole, depending on participant's language preference. Transcripts were translated, back-translated and reviewed in entirety for any statements or comments about "respect." After independent coding by 3 investigators, we used a consensual thematic analysis approach to determine themes. RESULTS: Results from this study grouped into two overarching classifications: respect manifested in physicians' orientation towards the patient (i.e., interpersonal behaviors in interactions) and respect in medical professionalism (i.e., clinic procedures and practices). Four main themes emerged regarding respect in provider's orientation towards the patient: being treated as a person, treated as an equal, treated without blame or prejudice, and treated with concern/emotional support. Two main themes emerged regarding respect as evidenced in medical professionalism: physician availability and considerations of privacy. CONCLUSIONS: Findings suggest a more robust conception of what 'respect for persons' entails in medical ethics for a diverse group of low-income women living with HIV. Findings have implications for broadening areas of focus of future bioethics education, training, and research to include components of interpersonal relationship development, communication, and clinic procedures. We suggest these areas of training may increase respectful medical care experiences and potentially serve to influence persistent and known social and structural determinants of health through provider interactions and health care delivery.
Assuntos
Infecções por HIV , Médicos , Humanos , Feminino , Haiti , Atenção à Saúde , Pesquisa Qualitativa , Médicos/psicologia , Infecções por HIV/terapiaRESUMO
Low-income, minority women living with HIV often experience multiple barriers in care that contribute to suboptimal care outcomes. Medical case managers (MCM) and medical providers are key players involved in care coordination and aid women along the HIV care continuum. The objective of this study was to identify current and potential patient-centered practices that facilitate adherence to medication and retention in care, from the perspective of racially and ethnically diverse women living with HIV. We implemented a qualitative study using semi-structured interviews with 75 African American, Hispanic/Latina, and Haitian women who were enrolled in the Ryan White HIV/AIDS Program in South Florida in 2019. We organized domains of exploration using a patient-centered care framework to identify practices in which providers acknowledged, respected, and responded to clients' preferences, needs, and values. Interviews were analyzed using consensual thematic analysis approach. Findings reflect women valued MCMs who were proactive and directive in care, provided motivation, and aided with navigation of shame, fear, and stigma. Women valued medical providers who upheld simple educational communication. Moreover, women reported that providers who reviewed medical results with clients, incorporated questions about families, and inquired about multiple physical and clinical needs beyond HIV created opportunities for women to feel respected, valued, and in turn, enhanced their involvement in their care. Findings identify specific interpersonal practices that can enhance the ability to better meet the needs of diverse groups of women, specifically those from racial/ethnic minority groups who face multiple sociocultural barriers while in care.
Assuntos
Infecções por HIV , Humanos , Feminino , Infecções por HIV/tratamento farmacológico , Florida , Etnicidade , Haiti , Grupos MinoritáriosRESUMO
The Ryan White Program (RWP) in Miami-Dade County, Florida made several modifications to keep HIV care accessible during the COVID-19 Pandemic, including expanding telehealth services, increasing access to HIV medications, and waiving required lab tests for service recertification. We assessed ease of access to medical providers, medical case managers, and antiretroviral medications during the COVID-19 Pandemic among 298 Non-Hispanic Black, Hispanic, and Haitian people with HIV (PWH) served by the RWP Part A, Miami-Dade County, Florida using a telephone-administered survey between October 2020 and January 2021. Overall, most clients reported similar or better access compared to before the Pandemic. Use of videocalls to communicate with HIV medical providers varied by race/ethnicity: Hispanics (49.6%), Non-Hispanic Blacks (37.7%), and Haitian clients (16.0%). Results suggest the modifications helped maintain access to care during an unprecedented health crisis. Permanently adopting many of these modifications should be considered to continue to facilitate access to care.
Assuntos
COVID-19 , Infecções por HIV , COVID-19/epidemiologia , Minorias Étnicas e Raciais , Etnicidade , Florida/epidemiologia , Infecções por HIV/tratamento farmacológico , Infecções por HIV/epidemiologia , Haiti/epidemiologia , Humanos , Grupos Minoritários , Pandemias , SARS-CoV-2RESUMO
With the introduction of combination antiretroviral therapy (ART) worldwide, youth with perinatal HIV infection are increasingly surviving childhood and transitioning to adult care. Although a normal life span is anticipated posttransition, successful transition to adult HIV care has proven difficult, with worse outcomes posttransition than in pediatric and adult care. This study is a qualitative analysis of data from 4 focus groups of pre- and posttransition patients, caregivers, and healthcare providers in the Dominican Republic at an institution that provides comprehensive treatment including ART for HIV-infected persons of all ages. All groups discussed the problems and challenges that patients, caregivers, and providers experience while living the transition process and beyond. Five major themes emerged: the trauma of transition itself, ART adherence, experience and impact of stigma, social supports and barriers, and recommendations for improving outcomes. Participants' insights offered approaches for a versatile structured transition process.
Assuntos
Fármacos Anti-HIV/uso terapêutico , Atitude do Pessoal de Saúde , Atitude Frente a Saúde , Cuidadores , Infecções por HIV/tratamento farmacológico , Transição para Assistência do Adulto , Adolescente , Adulto , Idoso , República Dominicana , Feminino , Grupos Focais , Infecções por HIV/transmissão , Pessoal de Saúde , Humanos , Transmissão Vertical de Doenças Infecciosas , Masculino , Adesão à Medicação , Pessoa de Meia-Idade , Trauma Psicológico , Pesquisa Qualitativa , Estigma Social , Apoio Social , Adulto JovemRESUMO
La autopercepción de aumento de volumen de extremidad superior, puede ser una herramienta eficaz en la pesquisa e intervención temprana del linfedema. El objetivo del estudio fueverificar la asociación entre autopercepción de aumento de volumen de extremidad superior y criterios objetivos de uso común para linfedema en mujeres tratadas por cáncer de mama. Se evaluaron 112 mujeres con cáncer de mama, quienes tenían entre 6 y 18 meses post cirugía. Se realizó el cálculo de volumetría indirecta de extremidades superiores, a través de cuatro criterios diagnósticos basados en diferencia de volumen de extremidades (≥2 cm, ≥ 200 mL, ≥10% ≥20%). La autopercepción de volumen fue evaluada con una pregunta. Para el análisis de datos, se utilizó la prueba de chi cuadrado. La media de edad fue 56,3 años (DE=13,1). La prevalencia observada para el criterio de diferencia de volumen ≥ 200 mL fue de 13,4%, 17% para criterio ≥10%, 6,25% para criterio ≥ 20% y 33% para criterio ≥2 cm. Stemmer fue positivo en 51,8% y fóvea positiva en 17,9% de las mujeres. La autopercepción de aumento de volumen se asoció con los criterios ≥ 200 mL y ≥10% y con la presencia de Stemmer y fóvea (p<0,05). En conclusión, la información entregada por las pacientes respecto de la autopercepción del volumen de su extremidad, se asoció con los criterios diagnósticos de linfedema más conservadores, así como para la presencia de signos de Stemmer y fóvea positiva. Estos se debiera considerar dentro de la evaluación clínica.
Self-perception of upper limbs swelling can be an effective tool in diagnostic and early intervention of lymphedema. The aim of the present paper was to verify the association between self-perception of swelling of upper extremities and objective criteria commonly used for lymphedema diagnostic in women treated for breast cancer. We evaluated 112 women with breast cancer between 6- and 18-months post-surgery. Indirect calculation of the volume of upper extremities through four criteria commonly used was employed (≥2 cm, ≥ 200 mL, ≥10%, ≥20%). The self-perception of swelling was evaluated with a question. The chi square test was used for data analysis. The mean age was 56.3 years (DE=13.1). The prevalence of lymphedema according to limb volume difference ≥ 200 ml criterion was 13.4%; 17% for criterion ≥10 %; 6.25% for criterion ≥ 20%; and 33% for criterion ≥2 cm. Stemmer was positive in 51.8% and 17.9% women presented positive fovea. Self-perception of swelling was associated with the criteria ≥ 200 mL and ≥10 % and the presence of positive Stemmer and fovea (p <0.05). In conclusion, the information provided by the patient about her perception of swelling, is associated with objective diagnostic criteria and the Stemmer and fovea positive signs. Self-perception should be considered in the clinical evaluation.
RESUMO
OBJECTIVES: To assess the safety, acceptability, and preliminary efficacy of a culturally-adapted disclosure intervention for perinatally HIV-infected combined antiretroviral therapy patients in Haiti and the Dominican Republic. DESIGN: A quasi-experimental trial was conducted comparing caregiver-youth pairs who completed the intervention [adapted Blasini disclosure model (aBDM)] to pairs who discontinued aBDM participation before disclosure. aBDM consists of five components: structured healthcare worker training; one-on one pre-disclosure intervention/education sessions for youth (describing pediatric chronic diseases including cancer, diabetes and HIV) and for caregivers (strengthening capacity for disclosure); a scheduled supportive disclosure session; and one-on-one postdisclosure support for caregivers and youth. METHODS: Caregivers of nondisclosed combined antiretroviral therapy patients aged 10.0-17.8 years were invited to participate. Data were collected by separate one-on-one face-to-face interviews of caregivers and youth by study staff and medical record review by pediatricians at enrollment and 3 months after disclosure or after intervention discontinuation. RESULTS: To date, 65 Dominican Republic and 27 Haiti caregiver-youth pairs have enrolled. At enrollment, only 46.4% of youth had viral suppression and 43.4% of caregivers had clinically significant depressive symptomatology. To date, two serious study-related adverse events have occurred. Seven of the 92 (7.6%, 6 in the Dominican Republic) enrolled pairs discontinued participation before disclosure and 39 had completed postdisclosure participation. Median plasma HIV-RNA concentration was lower in youth who completed aBDM than in youth who discontinued participation before aBDM disclosure (<40 versus 8673 copies/ml; Pâ=â0.027). Completers expressed considerable satisfaction with aBDM. CONCLUSION: Preliminary results suggest safety, acceptability, and possible effectiveness of the aBDM.
Assuntos
Infecções por HIV/psicologia , Modelos Psicológicos , Revelação da Verdade , Adolescente , Antirretrovirais/uso terapêutico , Cuidadores/psicologia , Criança , República Dominicana , Feminino , Infecções por HIV/tratamento farmacológico , Haiti , Humanos , Masculino , Satisfação do PacienteRESUMO
BACKGROUND: Germline mutations in PALB2 have been identified in approximately 1% of familial breast cancer (BC) in several populations. Nevertheless its contribution in the South-American population is unknown. The goal of this study was to determine the prevalence of PALB2 mutations in the Chilean population. METHODS: 100 Chilean BRCA1/2-negatives familial BC cases were included for the PALB2 mutation analysis. We use conformational sensitive gel electrophoresis and direct sequencing. Using a case-control design, we studied the identified variants in 436 BC cases and 809 controls to evaluate their possible association with BC risk. RESULTS: No pathogenic mutations were detected. We identified three variants, the variant c.1861C > A not previously described was found in one of the 436 cases and none of the 809 controls. The bioinformatic analyses indicate that this variant probably is not pathogenic. PALB2 c.1676A > G (rs152451A/G) and c.2993C > T (rs45551636C/T) variants were significantly associated with increased BC risk only in cases with a strong family history of BC (OR = 1.9 [CI 95% 1.3-2.8] p < 0.01 and OR = 3.3 [CI 95% 1.4-7.3] p < 0.01, respectively). The rs152451A/G-rs45551636C/T composite genotype produce increase of the BC risk in cases with a strong family history of BC (OR = 3.6 [CI 95% 1.7-8.0] p = 0.003). The rs152451-G/rs45551636-C and rs152451-G/rs45551636-T haplotypes were associated with an increased BC risk only in cases with a strong family history of BC (OR = 1.6 [CI 95% 1.0-2.5] p = 0.05 and OR = 3.7 [CI 95% 1.8-7.5] p < 0.001, respectively). CONCLUSION: Our results suggest that PALB2 c.1676A > G and c.2993C > T play roles in BC risk in women with a strong family history of BC.
Assuntos
Predisposição Genética para Doença , Variação Genética , Proteínas Nucleares/genética , Proteínas Supressoras de Tumor/genética , Adulto , Idade de Início , Alelos , Neoplasias da Mama/epidemiologia , Neoplasias da Mama/genética , Estudos de Casos e Controles , Chile/epidemiologia , Biologia Computacional , Análise Mutacional de DNA , Proteína do Grupo de Complementação N da Anemia de Fanconi , Feminino , Frequência do Gene , Genótipo , Haplótipos , Humanos , Pessoa de Meia-Idade , Mutação , Vigilância da População , Prevalência , Risco , Adulto JovemRESUMO
A mixed-methods study was conducted to determine the proportion of HIV-infected children who knew their status, identify characteristics associated with children's knowledge of their status, and describe caregivers' and adolescents' experiences relevant to disclosure in the Dominican Republic (DR). Of 327 patients aged 6-18 years treated in the principal DR pediatric HIV facilities, 74 (22.6 %) knew their status. Patients aged 13 years or older and/or who had participated in non-clinical activities for HIV-infected children were more likely to know their status. Caregivers who had disclosed cited healthcare providers' advice, children's desire to know and concerns that children might initiate sexual activity before knowing or discover their status by accidental or malicious disclosure. Non-disclosing caregivers worried that children would be traumatized by disclosure and/or stigmatized if they revealed it to others. Adolescents supported disclosure by 10-12 years of age, considered withholding of children's HIV diagnosis ill-advised, and recommended a disclosure process focused initially on promoting non-stigmatizing attitudes about HIV.
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Cuidadores/psicologia , Infecções por HIV/psicologia , Pessoal de Saúde/psicologia , Revelação da Verdade , Adolescente , Fármacos Anti-HIV/administração & dosagem , Criança , República Dominicana , Feminino , Grupos Focais , Infecções por HIV/tratamento farmacológico , Humanos , Masculino , Motivação , Pesquisa QualitativaRESUMO
Recent Genome-Wide Association Studies have identified several single nucleotide polymorphisms (SNPs) associated with breast cancer (BC) among women of Asian, European, and African-American ancestry. Nevertheless, the contribution of these variants in the South American population is unknown. Furthermore, there is little information about the effect of these risk alleles in women with early BC diagnosis. In the present study, we evaluated the association between rs3803662 (TOX3, also known as TNRC9), rs13387042 (2q35), and rs13281615 (8q24) with BC risk in 344 Chilean BRCA1/2-negative BC cases and in 801 controls. Two SNPs, rs3803662 and rs13387042, were significantly associated with increased BC risk in familial BC and in non-familial early-onset BC. The risk of BC increased in a dose-dependent manner with the number of risk alleles (P-trend < 0.0001 and 0.0091, respectively). The odds ratios for BC in familial BC and in early-onset non-familial BC were 3.76 (95%CI 1.02-13.84, P = 0.046) and 8.0 (95%CI 2.20-29.04, P = 0.002), respectively, for the maximum versus minimum number of risk alleles. These results indicate an additive effect of the TOX3 rs3803662 and 2q35 rs13387042 alleles for BC risk. We also evaluated the interaction between rs3803662 and rs13387042 SNPs. We observed an additive interaction only in non-familial early-onset BC cases (AP = 0.72 (0.28-1.16), P = 0.001). No significant association was observed for rs13281615 (8q24) with BC risk in women from the Chilean population. The strongly increased risk associated with the combination of low-penetrance risk alleles supports the polygenic inheritance model of BC.
Assuntos
Estudos de Associação Genética , Polimorfismo de Nucleotídeo Único/genética , Receptores de Progesterona/genética , Idade de Início , Idoso , Idoso de 80 Anos ou mais , Alelos , Proteínas Reguladoras de Apoptose , Neoplasias da Mama/genética , Cromossomos Humanos Par 2/genética , Cromossomos Humanos Par 8/genética , Feminino , Predisposição Genética para Doença , Proteínas de Grupo de Alta Mobilidade , Humanos , Pessoa de Meia-Idade , América do Sul , TransativadoresRESUMO
Genome-Wide Association Studies have identified several loci associated with breast cancer (BC) in populations of different ethnic origins. One of the strongest associations was found in the FGFR2 gene, and MAP3K1 has been proposed as a low-penetrance BC risk factor. In this study, we evaluated the associations among FGFR2 SNPs rs2981582, rs2420946, and rs1219648; and MAP3K1 rs889312, with BC risk in 351 BRCA1/2-negative Chilean BC cases and 802 controls. All the SNPs studied were significantly associated with increased BC risk in familial BC and in non-familial early-onset BC, in a dose-dependent manner. Subjects with 3 risk alleles were at a significantly increased risk of BC compared with subjects with 0-2 risk alleles, in both familial BC and early-onset non-familial BC (OR = 1.47, 95 % CI 1.04-2.07, P = 0.026 and OR = 2.04 95 % CI 1.32-3.24, P < 0.001, respectively). In the haplotype analysis, the FGFR2 rs2981582 T / rs2420946 T / rs1219648 G haplotype (ht2) was associated with a significantly increased BC risk compared with the rs2981582 C / rs2420946 C / rs1219648 A haplotype in familial BC and in non-familial early-onset BC (OR = 1.32, 95 % CI 1.06-1.65, P = 0.012; OR = 1.46, 95 % CI 1.11-1.91, P = 0.004, respectively). When the FGFR2 ht2 and MAP3K1 rs889312 were evaluated as risk alleles, the risk of BC increased in a dose-dependent manner as the number of risk alleles increased (P trend <0.0001), indicating an additive effect. Nevertheless, there is no evidence of an interaction between FGFR2 ht2 and the MAP3K1 rs889312 C allele. These findings suggest that genetic variants in the FGFR2 and MAP3K1 genes may contribute to genetic susceptibility to BC.
Assuntos
Neoplasias da Mama/genética , Predisposição Genética para Doença , MAP Quinase Quinase Quinase 1/genética , Polimorfismo de Nucleotídeo Único , Receptor Tipo 2 de Fator de Crescimento de Fibroblastos/genética , Adulto , Idade de Início , Neoplasias da Mama/epidemiologia , Estudos de Casos e Controles , Chile/epidemiologia , Família , Feminino , Frequência do Gene , Haplótipos/genética , Humanos , Desequilíbrio de LigaçãoRESUMO
This study investigates a theorized link between Latino immigrants' experience of acculturative stress during their two initial years in the United States (US) and declines in family cohesion from pre- to post-immigration contexts. This retrospective cohort study included 405 adult participants. Baseline assessment occurred during participants' first 12 months in the US. Follow-up assessment occurred during participants' second year in the US. General linear mixed models were used to estimate change in family cohesion and sociocultural correlates of this change. Inverse associations were determined between acculturative stress during initial years in the US and declines in family cohesion from pre-immigration to post-immigration contexts. Participants with undocumented immigration status, those with lower education levels, and those without family in the US generally indicated lower family cohesion. Participants who experienced more acculturative stress and those without family in the US evidenced a greater decline in family cohesion. Results are promising in terms of implications for health services for recent Latino immigrants.
Assuntos
Aculturação , Emigrantes e Imigrantes/psicologia , Relações Familiares/etnologia , Hispânico ou Latino/psicologia , Estresse Psicológico/etnologia , Adulto , América Central/etnologia , Cuba/etnologia , Feminino , Humanos , Masculino , Estudos Retrospectivos , América do Sul/etnologia , Estados Unidos , Adulto JovemRESUMO
Since the discovery of the BRCA1 and BRCA2 genes, much work has been carried out to identify further breast cancer (BC) susceptibility genes. BARD1 (BRCA1-associated ring domain) was originally identified as a BRCA1-interacting protein but has also been described in tumor-suppressive functions independent of BRCA1. Some association studies have suggested that the BARD1 Cys557Ser variant might be associated with increased risk of BC, but others have failed to confirm this finding. To date, this variant has not been analyzed in Spanish or South-American populations. In this study, using a case-control design, we analyzed the C-terminal Cys557Ser change in 322 Chilean BC cases with no mutations in BRCA1 or BRCA2 and in 570 controls in order to evaluate its possible association with BC susceptibility. BARD1 Cys557Ser was associated with an increased BC risk (P = 0.04, OR = 3.4 [95 % CI 1.2-10.2]) among cases belonging to families with a strong family history of BC. No difference between single cases affected with age <50 years at diagnosis (n = 117) and controls was observed for carriers of Cys/Ser genotype. It is likely that this variant is not involved in BC risk in this group of women. We also analyzed a possible interaction between BARD1 557Ser/XRCC3 241Met variants considering the role of both genes in the maintenance of genome integrity. The combined genotype Cys/Ser-carrier with the XRCC3 241Met allele was associated with an increased BC risk (P = 0.02, OR = 5.01 [95 % CI 1.36-18.5]) among women belonging to families with at least three BC and/or ovarian cancer cases. Our results suggest that BARD1 557Ser and XRCC3 241Met may play roles in BC risk in women with a strong family history of BC. Nevertheless there is no evidence of an interaction between the two SNPs. These findings should be confirmed by other studies and in other populations.
Assuntos
Neoplasias da Mama/genética , Predisposição Genética para Doença , Polimorfismo de Nucleotídeo Único , Proteínas Supressoras de Tumor/genética , Ubiquitina-Proteína Ligases/genética , Adulto , Alelos , Estudos de Casos e Controles , Chile , Proteínas de Ligação a DNA/genética , Família , Feminino , Frequência do Gene , Genótipo , Humanos , Pessoa de Meia-IdadeRESUMO
The double-strand break (DSB) DNA repair pathway has been implicated in breast cancer (BC). RAD51 and its paralogs XRCC3 and RAD51D play an important role in the repair of DSB through homologous recombination (HR). Some polymorphisms including XRCC3-Thr241Met, RAD51-135G>C, and RAD51D-E233G have been found to confer increased BC susceptibility. In order to detect novel mutations that may contribute to BC susceptibility, 150 patients belonging to 150 Chilean BRCA1/2-negative families were screened for mutations in XRCC3. No mutations were detected in the XRCC3 gene. In addition, using a case-control design we studied the XRCC3-Thr241Met, and RAD51D-E233G polymorphisms in 267 BC cases and 500 controls to evaluate their possible association with BC susceptibility. The XRCC3 Met/Met genotype was associated with an increased BC risk (P = 0.003, OR = 2.44 [95%CI 1.34-4.43]). We did not find an association between E233G polymorphism and BC risk. We also analyzed the effect of combined genotypes among RAD51-135G>C, Thr241Met, and E233G polymorphisms on BC risk. No interaction was observed between Thr241Met and 135G>C. The combined genotype Thr/Met-E/G was associated with an increased BC risk among women who (a) have a family history of BC, (b) are BRCA1/2-negative, and (c) were <50 years at onset (n = 195) (P = 0.037, OR = 10.5 [95%CI 1.16-94.5]). Our results suggested that the variability of the DNA HR repair genes XRCC3 and RAD51D may play a role in BC risk, but this role may be underlined by a mutual interaction between these genes. These findings should be confirmed in other populations.