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OBJECTIVES: Cultural norms shape expectations, care, and communication. Effective interpersonal communication is a prominent predictor of patient-partner cancer management, improving the overall quality of life for the dyad by increasing their ability to cope with cancer. However, couples-based cancer interventions often do not consider cultural factors. Additionally, although Latinas have a high incidence of breast cancer, few studies focus on Latino couples and the influence of culture in cancer care interventions. This study focuses on understanding how Latino culture's norms and expectations influence how couples communicate and cope post-breast cancer diagnosis. DESIGN: This study conducted interviews and focus groups with a purposive sample of Spanish-speaking Latina breast cancer survivors (N = 21) and intimate partners (N = 5). In the focus group and interviews, participants were asked about the influence cancer had on their relationship, with specific questions focusing on communication within the dyad. The study team used CARV: Community-Engaged Adaptation with Rapid Analysis and Visualization framework to identify cultural considerations and recurring themes. RESULTS: The cross-cutting cultural considerations and themes found were: the negative influence of gendered and social norms on managing emotions and coping; the silent struggle with physical intimacy; and the inability to discuss the topic - or even say the word 'cancer.' CONCLUSION: Understanding the role of Latino culture in how couples cope with and communicate about cancer post-diagnosis is essential. This understanding will help strengthen the dyad by assisting with positive interpersonal support, which contributes to a better quality of life. These findings will also help providers assist dyads in navigating the cancer diagnosis and journey, helping to lessen the interpersonal stress and tensions that can occur after diagnosis.
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Adaptação Psicológica , Neoplasias da Mama , Relações Interpessoais , Feminino , Humanos , Neoplasias da Mama/psicologia , Comunicação , Capacidades de Enfrentamento , Hispânico ou Latino/psicologia , Motivação , Qualidade de Vida , Sobreviventes de Câncer/psicologiaRESUMO
Problem Management Plus (PM+) is a protocolized, low-intensity, transdiagnostic psychological intervention designed to be delivered by lay individuals. Faculty at the University of South Florida School of Social Work recognized PM + as a potential psychological intervention for master's students to learn to complement their clinical coursework and simultaneously provide an experiential learning experience to support their clinical skills. Before this pilot, the feasibility and acceptability of integrating PM + into a Master of Social Work (MSW) setting were unknown. Upon analyzing the students' feedback using inductive content analysis, it is evident that experiential learning using interventions is crucial to building the self-efficacy of MSW students. Students reported that PM + helped their personal mental health and client interactions, using the tools they learned even a year after the pilot. Future research should focus on integrating PM + into experiential learning experiences within social work and allied academic settings and professions.
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Aprendizagem Baseada em Problemas , Intervenção Psicossocial , Humanos , Aprendizagem , Estudantes/psicologia , DocentesRESUMO
OBJECTIVES: This brief report aims to describe and determine the association of family functioning (e.g., cohesion and expressiveness) with psychosocial needs among Spanish Latinx patients coping with advanced cancers. METHODS: Descriptive and correlation analyses were performed on data from 103 patients coping with advanced cancer (Stages III and IV). The measures used were the Family Relationships Index, the Hospital Anxiety and Depression Scale, and the Functional Assessment of Cancer Therapy: General. RESULTS: Results indicated that most of the participants had low family function (65%). Participants with higher family functioning (35%) had high levels of quality of life [r(103) .318, p < .002]. A higher level of quality of life was also strongly associated with lower levels of anxiety [r(95) -.653, p < .000], lower levels of depression [r(95) -.733, p < .000], and lower levels of hopelessness [r(95) -.585, p = .000]. A total of 22.3% of Latinx advanced cancer patients reported poor cohesiveness; those with low cohesiveness also had higher levels of depression [r(103) -.28, p = .004] and anxiety [r(103) -.27, p = .005]. Correlations between expressiveness and hopelessness were significant; namely, those with higher expressiveness had lower hopelessness [r(103) -.274, p = .005]. SIGNIFICANCE OF RESULTS: Findings present a high correlation between family functioning and psychosocial symptoms.
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Depressão , Neoplasias , Humanos , Depressão/etiologia , Depressão/psicologia , Qualidade de Vida/psicologia , Adaptação Psicológica , Neoplasias/complicações , Neoplasias/psicologia , Ansiedade/etiologia , Ansiedade/psicologia , Hispânico ou LatinoRESUMO
We designed an infographic intervention to help clinicians provide health information to persons living with HIV. In this study, we assessed the extent to which our intervention may improve objectively and subjectively measured health outcomes (CD4 count, viral load, and engagement with clinician among others) when integrated into routine visits in the Dominican Republic. In this pretest-posttest study, we followed participants for 9 months at 3-month intervals. Physicians administered the intervention during participants' first 3 visits. Outcome measures, selected using a conceptual model, were assessed at 4 time points. We assessed changes in outcomes over time with general linear regressions and Wilcoxon Signed-Rank tests. Participants (N = 50) were mostly female (56%) and had been living with HIV for a mean of 6.3 years (SD = 6.1). All outcomes, except CD4 count, demonstrated statistically significant improvements by study end. This provides preliminary evidence our intervention may improve outcomes, but further testing is needed.
RESUMEN: Diseñamos una intervención infográfica para ayudar a los médicos brindar información médica a personas viviendo con el VIH. En este estudio, evaluamos en qué medida nuestra intervención puede mejorar los resultados de salud (conteo de CD4, carga viral, y compromiso con el médico entre otros), medidos de una manera objetiva y subjetiva, cuando se incorpora en las visitas médicas de rutina en la República Dominicana. En este estudio de prueba previo y posterior, seguimos los participantes durante 9 meses a intervalos de 3 meses. Los médicos administraron la intervención durante las primeras 3 visitas de los participantes. Seleccionamos las medidas de resultado utilizando un marco conceptual y las evaluamos en los 4 puntos de tiempo. Evaluamos cambios a lo largo del tiempo usando regresiones lineales generales y pruebas de asociación de Wilcoxon Signed-Rank. Los participantes (N = 50) fueron mayormente mujeres (56%) y habían estado viviendo con el VIH durante una media de 6,3 años (DE = 6,1). Todos los resultados, aparte del conteo de CD4, demostraron mejoras estadísticamente significativas al final del estudio. Esto proporciona evidencia preliminar de que nuestra intervención puede mejorar los resultados de la salud, pero se justifican pruebas adicionales.
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Visualização de Dados , Infecções por HIV , Assistência Ambulatorial , República Dominicana/epidemiologia , Feminino , Infecções por HIV/tratamento farmacológico , Infecções por HIV/epidemiologia , Humanos , Masculino , Avaliação de Resultados em Cuidados de Saúde , Carga ViralRESUMO
PURPOSE: We qualitatively explored the unique needs and preferences for financial toxicity screening and interventions to address financial toxicity among adolescents and emerging adults (younger AYAs: 15-25 years) with cancer and their caregivers. METHODS: We recruited English- or Spanish-speaking younger AYAs who were treated for cancer within the past 2 years and their caregivers. Semi-structured interviews were conducted to explore preferences for screening and interventional study development to address financial toxicity. The data were coded using conventional content analysis. Codes were reviewed with the study team, and interviews continued until saturation was reached; codes were consolidated into categories and themes during consensus discussions. RESULTS: We interviewed 17 participants; nine were younger AYAs. Seven of the 17 preferred to speak Spanish. We identified three cross-cutting themes: burden, support, and routine, consistent, and clear. The burden came in the form of unexpected costs such as transportation to appointments, as well as emotional burdens such as AYAs worrying about how much their family sacrificed for their care or caregivers worrying about the AYA's physical and financial future. Support, in the form of familial, community, healthcare institution, and insurance, was critical to mitigating the effects of financial toxicity in this population. Participants emphasized the importance of meeting individual financial needs by routinely and consistently asking about financial factors and providing clear guidance to navigate these needs. CONCLUSION: Younger AYAs and their caregivers experience significant financial challenges and unmet health-related social needs during cancer treatment and often rely on key supports to alleviate these unmet needs. When developing interventions to mitigate financial toxicity, clinicians and health systems should prioritize clear, consistent, and tailorable approaches to support younger AYA cancer survivors and their families.
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Cuidadores , Neoplasias , Humanos , Adolescente , Neoplasias/psicologia , Neoplasias/terapia , Neoplasias/economia , Masculino , Feminino , Adulto Jovem , Cuidadores/psicologia , Adulto , Efeitos Psicossociais da Doença , Apoio Social , Pesquisa Qualitativa , Comparação Transcultural , Necessidades e Demandas de Serviços de Saúde , Estresse Financeiro/psicologiaRESUMO
OBJECTIVE: To pilot test an infographic-based health communication intervention that our team rigorously designed and explore whether its implementation leads to better health outcomes among Latino persons with HIV (PWH). MATERIALS AND METHODS: Latino PWH (N = 30) living in New York City received the intervention during health education sessions at 3 study visits that occurred approximately 3 months apart. At each visit, participants completed baseline or follow-up assessments and laboratory data were extracted from patient charts. We assessed 6 outcomes (HIV-related knowledge, self-efficacy to manage HIV, adherence to antiretroviral therapy, CD4 count, viral load, and current and overall health status) selected according to a conceptual model that describes pathways through which communication influences health outcomes. We assessed changes in outcomes over time using quantile and generalized linear regression models controlling for the coronavirus disease 2019 (COVID-19) research pause and new patient status (new/established) at the time of enrollment. RESULTS: Most participants were male (60%) and Spanish-speaking (60%); 40% of participants identified as Mixed Race/Mestizo, 13.3% as Black, 13.3% as White, and 33.3% as "other" race. Outcome measures generally improved after the second intervention exposure. Following the third intervention exposure (after the COVID-19 research pause), only the improvements in HIV-related knowledge and current health status were statistically significant. DISCUSSION AND CONCLUSION: Our infographic-based health communication intervention may lead to better health outcomes among Latino PWH, but larger trials are needed to establish efficacy. From this work, we contribute suggestions for effective infographic use for patient-provider communication to enhance patient education in clinical settings.
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Visualização de Dados , Infecções por HIV , Comunicação em Saúde , Hispânico ou Latino , Feminino , Humanos , Masculino , Infecções por HIV/terapia , Educação de Pacientes como AssuntoRESUMO
BACKGROUND: People living with HIV have long life expectancy and are experiencing more comorbid conditions, being at an increased risk for developing cardiovascular disease (CVD) and diabetes, further exacerbated due to the HIV or inflammatory process. One effective intervention shown to decrease mortality and improve health outcomes related to CVD and diabetes in people living with HIV is increased regular physical activity. However, people living with HIV often fall short of the daily recommended physical activity levels. While studies show that mobile health (mHealth) can potentially help improve people's daily activity levels and reduce mortality rates due to comorbid conditions, these studies do not specifically focus on people living with HIV. As such, it is essential to understand how mHealth interventions, such as wearables, can improve the physical activity of people living with HIV. OBJECTIVE: This study aimed to understand participants' experiences wearing a fitness tracker and an app to improve their physical activity. METHODS: In total, 6 focus groups were conducted with participants who completed the control arm of a 6-month randomized controlled trial (ClinicalTrials.gov NCT03205982). The control arm received daily walk step reminders to walk at least 5000 steps per day and focused on the overall wellness of the individual. The analysis of the qualitative focus groups used inductive content analysis using the theory of planned behavior as a framework to guide and organize the analysis. RESULTS: In total, 41 people living with HIV participated in the focus groups. The majority (n=26, 63%) of participants reported their race as Black or African American, and 32% (n=13) of them identified their ethnicity as Hispanic or Latino. In total, 9 major themes were identified and organized following the theory of planned behavior constructs. Overall, 2 major themes (positive attitude toward tracking steps and tracking steps is motivating) related to attitudes toward the behavior, 2 major themes (social support or motivation from the fitness tracker and app and encouragement from family and friends) related to participant's subjective norms, 1 theme (you can adjust your daily habits with time) related to perceived behavioral control, 2 themes (reach their step goal and have a healthier lifestyle) related to participant's intention, and 2 themes (continuing to walk actively and regularly wearing the fitness tracker) related to participant's changed behavior. Participants highlighted how the mHealth interface with the avatar and daily step tracking motivated them to both begin and continue to engage in physical activity by adjusting their daily routines. CONCLUSIONS: Findings from this study illustrate how features of mHealth apps may motivate people living with HIV to start and continue sustained engagement in physical activities. This sustained increase in physical activity is crucial for reducing the risk of comorbid conditions such as diabetes or CVD. TRIAL REGISTRATION: ClinicalTrials.gov NCT03205982; https://classic.clinicaltrials.gov/ct2/show/NCT03205982.
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ABSTRACT: The objective of this study was to explore how receiving a sexually transmitted infection (STI) diagnosis affects subsequent STI knowledge and sexual risk behavior among key populations in La Romana, Dominican Republic (DR) who participated in a parent study 12 to 24 months before the current study. Nine participants, with a mean age of 37 years (range 20-54 years) and a female majority (89%), who were recruited from the parent study completed in-depth interviews, questionnaires assessing STI knowledge, and received STI testing. Interviews were analyzed using qualitative descriptive methodology and questionnaire data, comparing individual's responses between the parent and current studies. Participants reported safer sexual behaviors after original STI diagnosis, such as more frequent condom use. Questionnaires showed improvement in STI knowledge between the parent and current studies. Three participants had an STI reinfection. Findings warrant further exploration into more comprehensive and targeted STI treatment methods for key populations in the DR.
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Infecções por HIV , Infecções Sexualmente Transmissíveis , Feminino , Humanos , Adulto Jovem , Adulto , Pessoa de Meia-Idade , Infecções por HIV/diagnóstico , Infecções por HIV/tratamento farmacológico , Estudos Transversais , República Dominicana , Infecções Sexualmente Transmissíveis/diagnóstico , Infecções Sexualmente Transmissíveis/epidemiologia , Comportamento SexualRESUMO
IMPORTANCE: Progression of HIV disease, the transmission of the disease, and premature deaths among persons living with HIV (PLWH) have been attributed foremost to poor adherence to HIV medications. mHealth tools can be used to improve antiretroviral therapy (ART) adherence in PLWH and have the potential to improve therapeutic success. OBJECTIVE: To determine the efficacy of WiseApp, a user-centered design mHealth intervention to improve ART adherence and viral suppression in PLWH. DESIGN, SETTING, AND PARTICIPANTS: A randomized (1:1) controlled efficacy trial of the WiseApp intervention arm (n = 99) versus an attention control intervention arm (n = 101) among persons living with HIV who reported poor adherence to their treatment regimen and living in New York City. INTERVENTIONS: The WiseApp intervention includes the following components: testimonials of lived experiences, push-notification reminders, medication trackers, health surveys, chat rooms, and a "To-Do" list outlining tasks for the day. Both study arms also received the CleverCap pill bottle, with only the intervention group linking the pill bottle to WiseApp. RESULTS: We found a significant improvement in ART adherence in the intervention arm compared to the attention control arm from day 1 (69.7% vs 48.3%, OR = 2.5, 95% CI 1.4-3.5, P = .002) to day 59 (51.2% vs 37.2%, OR = 1.77, 95% CI 1.0-1.6, P = .05) of the study period. From day 60 to 120, the intervention arm had higher adherence rates, but the difference was not significant. In the secondary analyses, no difference in change from baseline to 3 or 6 months between the 2 arms was observed for all secondary outcomes. CONCLUSIONS: The WiseApp intervention initially improved ART adherence but did not have a sustained effect on outcomes.
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Infecções por HIV , Autogestão , Telemedicina , Humanos , Adesão à Medicação , Infecções por HIV/tratamento farmacológico , Antirretrovirais/uso terapêuticoRESUMO
Chatbot use is increasing for mobile health interventions on sensitive and stigmatized topics like mental health because of their anonymity and privacy. This anonymity provides acceptability to sexual and gendered minority youth (ages 16-24) at increased risk of HIV and other STIs with poor mental health due to higher levels of stigma, discrimination, and social isolation. This study evaluates the usability of Tabatha-YYC, a pilot chatbot navigator created to link these youth to mental health resources. Tabatha-YYC was developed using a Youth Advisory Board (n = 7). The final design underwent user testing (n = 20) through a think-aloud protocol, semi-structured interview, and a brief survey post-exposure which included the Health Information Technology Usability Evaluation Scale. The chatbot was found to be an acceptable mental health navigator by participants. This study provides important design methodology considerations and key insights into chatbot design preferences of youth at risk of STIs seeking mental health resources.
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ABSTRACT: Supervised physical activity can increase functional capacity in persons with HIV (PWH); however, aerobic interventions have shown little improvement in overall physical activity in PWH. In response, we sought to assess the effect of wearing a fitness tracker (FitBit) paired with walk step reminders delivered through an mHealth application to improve physical activity and decreasing body mass index among PWH in New York City. There was no significant difference in the frequency of walk steps between participants in the control group and intervention group from baseline to 6-month follow-up. These findings show that walk step reminders alone were inadequate for sustained improvement of physical activity. This study highlights the need to develop and test the comparative efficacy of physical activity interventions that are tailored to the unique needs and capabilities of PWH. Future interventions should incorporate fitness tracking with tailored interventions focused on the promotion of physical activity.Clinical Trials.Gov Registration number: NCT03205982.
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Infecções por HIV , Telemedicina , Humanos , Cidade de Nova Iorque , Exercício Físico/fisiologia , Índice de Massa CorporalRESUMO
OBJECTIVE: The Health Information Technology Usability Evaluation Scale (Health-ITUES) is a validated and reliable instrument to evaluate usability of information technology (IT) tools. In this study, we aimed to establish the optimal cut-point of the Health-ITUES to identify usability of IT tools. METHODS: Adult participants were recruited to a trial evaluating a mobile app for self-managing HIV. Participants completed the Health-ITUES at the 3- and 6-month follow-up. Health-ITUES is a 20-item questionnaire that assesses four subscales: impact, perceived usefulness, perceived ease of use, and user control. The total score ranged from 1 to 5 and a higher score indicates greater usability. App use was defined as the proportion of activities completed by participants in both study arms. The selection of an optimal cut-point involved a series of multiple linear regression models with 500 bootstrap replications to examine the relationship between the Health-ITUES total score and app use, controlling for potential covariates. RESULTS: We included 158 participants; mean age was 49.7 years (SD 10.3), 71% were African American/Black, and 72% were non-Hispanic. Mean Health-ITUES total scores at 3 and 6 months were 4.39 (SD 0.75) and 4.43 (SD 0.75), respectively. App use completedby participants from baseline to the 3-month follow-up visits was 0.61 (SD 0.36, range 0-1.72) and from 3-month to the 6-month follow-up visits was 0.51 (SD 0.37). Participants who reported greater Health-ITUES total score completed more activities [ß = 0.18, 95% Confidence Interval (CI) 0.10-0.27]. The optimal cut-point of 4.32 (95% CI: 4.25-4.56) yielded the lowest p-value to identify usability of IT tools. CONCLUSIONS: In this study of adults with HIV, we identified an optimal cut-point of 4.32 on the Health-ITUES total score to define usability. Further studies are needed to validate this cut-point.
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Informática Médica , Aplicativos Móveis , Adulto , Humanos , Tecnologia da Informação , Pessoa de Meia-Idade , Inquéritos e QuestionáriosRESUMO
Explanatory models describe individuals' perceptions of their illness experiences, which can guide culturally relevant care. We constructed an explanatory model of the experience of living with human immunodeficiency virus (HIV) in the Dominican Republic. Following qualitative descriptive methodology, we conducted interviews in Spanish using a semi-structured interview guide developed using Kleinman's explanatory model framework. Two bilingual researchers coded interview transcripts following conventional content analysis. We used deductive codes from Kleinman's framework and inductive codes external to the framework to construct the codebook. We arranged codes by shared meaning into categories and constructed themes that reflected shared findings from inductive categories and deductive codes. Twenty-six persons living with HIV participated. They provided rich descriptions of their experiences represented by four cross-cutting themes, which informed the explanatory model. By incorporating this in-depth understanding of patients' illness experiences into care delivery, nurses can cultivate culturally meaningful and trusting patient-centered partnerships that improve health.
Los modelos explicativos describen las percepciones personales de las experiencias de vivir con una enfermedad, lo cual puede guiar una atención médica culturalmente relevante. Hemos construido un modelo explicativo a partir de la experiencia de vivir con el virus de inmunodeficiencia humana (VIH) en la República Dominicana. Siguiendo una metodología descriptiva cualitativa, realizamos entrevistas en idioma español basándonos en una guía de entrevista semiestructurada desarrollada dentro del marco del modelo explicativo de Kleinman. Dos investigadores bilingües codificaron las transcripciones de las entrevistas siguiendo un análisis de contenido convencional. Empleamos códigos deductivos del marco de Kleinman y códigos inductivos ajenos al marco para crear el libro de códigos. Organizamos los códigos por significado compartido en categorías; construimos los temas a fin de reflejar los hallazgos compartidos de las categorías inductivas y los códigos deductivos. Participaron veintiséis personas que viven con VIH. Brindaron descripciones abundantes de sus experiencias representadas por cuatro temas transversales, los cuales informaron el modelo explicativo. Al incorporar en la atención médica este entendimiento profundo de las experiencias de los pacientes de vivir con una enfermedad, el personal de enfermería puede desarrollar relaciones centradas en el paciente culturalmente significativas y de confianza que mejoran la salud.
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Improving access to HIV testing among youth at high risk is essential for reaching those who are most at risk for HIV and least likely to access health care services. This study evaluates the usability of mLab, an app with image-processing feature that analyzes photos of OraQuick HIV self-tests and provides real-time, personalized feedback. mLab includes HIV prevention information, testing reminders, and instructions. It was developed through iterative feedback with a youth advisory board (N = 8). The final design underwent heuristic (N = 5) and end-user testing (N = 20). Experts rated mLab following Nielsen's heuristic checklist. End-users used the Health Information Technology Usability Evaluation Scale. While there were some usability problems, overall study participants found mLab useful and user-friendly. This study provides important insights into using a mobile app with imaging for interpreting HIV test results with the goal of improving HIV testing and prevention in populations at high risk.