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Aims: To explore the person, environment, and occupation-related self-management strategies used by older Hispanic men to cope with disabilities in different types of daily activities. Methods: A concurrent transformative mixed method design (with priority given to the qualitative phase) guided by the Environment and Occupational Performance Model was used to collect and analyze data of 12 participants with functional disabilities. Quantitative data was gathered using the PROMIS Physical Function Short Form-20. Qualitative data was obtained from in-depth semi-structured interviews on participants' self-management strategies. Results: The average T-score (35.96) was below the national average. Participants reported higher levels of functional disabilities in instrumental activities of daily living (IADL), and predominantly used practical social support and change in method of performance to manage their difficulties in self-care, IADL, and functional mobility activities. Conclusions: These strategies may be used with similar populations to design interventions aimed at increasing older Puerto Rican's function.
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INTRODUCTION: Community engagement (CE) is critical for research on the adoption and use of assistive technology (AT) in many populations living in resource-limited environments. Few studies have described the process that was used for engaging communities in AT research, particularly within low-income communities of older Hispanic with disabilities where limited access, culture, and mistrust must be navigated. We aimed to identify effective practices to enhance CE of low-income Hispanic communities in AT research. METHODS: The community stakeholders included community-based organizations, the community healthcare clinic, the local AT project, and residents of the Caño Martín Peña Community in San Juan, Puerto Rico. The CE procedures and activities during the Planning the Study Phase comprised working group meetings with stakeholders to cocreate the funding proposal for the study and address the reviewers' critiques. During the Conducting the Study Phase, we convened a Community Advisory Board to assist in the implementation of the study. During the Disseminating the Study Results Phase, we developed and implemented plans to disseminate the research results. RESULTS: We identified seven distinct practices to enhance CE in AT research with Hispanic communities: (1) early and continuous input; (2) building trusting and warm relationships through personal connections; (3) establishing and maintaining presence in the community; (4) power sharing; (5) shared language; (6) ongoing mentorship and support to community members; and (7) adapting to the changing needs of the community. CONCLUSION: Greater attention to CE practices may improve the effectiveness and sustainability of AT research with low-income communities.
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Health literacy, including people's abilities to access, process, and comprehend health-related information, has become an important component in the management of complex and chronic diseases such as HIV infection. Clinical measures of health literacy that focus on patients' abilities to follow plans of care ignore the multidimensionality of health literacy. Our thematic analysis of 28 focus groups from a qualitative, multisite, multinational study exploring information practices of people living with HIV (PLWH) demonstrated the importance of location as a dimension of health literacy. Clinical care and conceptual/virtual locations (media/Internet and research studies) were used by PLWH to learn about HIV and how to live successfully with HIV. Nonclinical spaces where PLWH could safely discuss issues such as disclosure and life problems were noted. Expanding clinical perspectives of health literacy to include location, assessing the what and where of learning, and trusted purveyors of knowledge could help providers improve patient engagement in care.
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Confidencialidade , Infecções por HIV/psicologia , Conhecimentos, Atitudes e Prática em Saúde , Letramento em Saúde/métodos , Educação de Pacientes como Assunto/métodos , Confiança , Adulto , Botsuana , Atenção à Saúde , Feminino , Grupos Focais , Humanos , Masculino , Pessoa de Meia-Idade , Porto Rico , Pesquisa Qualitativa , Estados UnidosRESUMO
PURPOSE: To identify: (1) the most frequently used assistive technology (AT) by a sample of community-living older Hispanics; (2) their AT needs; (3) the AT that would not be used by the simple; and (4) the factors associated with the willingness to use AT. MATERIALS AND METHODS: We used a cross-sectional descriptive study design with a purposive sample of 60 individuals 70 years and older living in Puerto Rico. Data collection tools included a socio-demographic questionnaire and the Assistive Technology Card Assessment. We used descriptive statistics to identify the sample AT use and needs, χ2 to determine the frequency distribution of the socio-demographic variables and the Spearman's rank correlation coefficient (rho) to describe the strength of the association between these variables and the willingness to use AT devices. RESULTS: The sample had unmet needs for AT devices for cooking, home tasks and home safety. A higher number of health conditions as well as having low educational levels were associated with willingness to use AT devices. CONCLUSIONS: Policy implications are discussed supporting the role of rehabilitation professionals, state government and community-based programmes, including the Area Agencies on Aging, in providing culturally relevant AT education and accessibility to assistive devices. Implications for rehabilitations Hispanic older adults with functional limitations living independently in Puerto Rico have unmet needs for AT devices to compensate for physical limitations and increase safety performance, predominantly in instrumental activities of daily living. New policies need to be developed to advocate for increased healthcare coverage of low tech AT devices that could be highly beneficial to older people with functional limitations. Community-based programs administered by the state government, the Area Agencies of Aging, or operated through Medicare need to be developed to provide education, training, loans, purchasing, and delivery of low AT devices that can compensate for older people functional limitations.
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Pessoas com Deficiência/reabilitação , Hispânico ou Latino , Vida Independente , Tecnologia Assistiva/estatística & dados numéricos , Atividades Cotidianas , Idoso , Idoso de 80 Anos ou mais , Comorbidade , Estudos Transversais , Feminino , Nível de Saúde , Humanos , Masculino , Avaliação das Necessidades , Porto Rico , Características de Residência , Fatores SocioeconômicosRESUMO
Studies concerning persons living with HIV (PLWH) report that stressful life events (SLEs) contribute to an exacerbation of symptoms and reduced antiretroviral (ARV) adherence and quality of life (QOL). Little is known about whether these findings are site-specific. Our study's aims were to characterize the type and frequency of SLEs for PLWH in Puerto Rico, South Africa, and the United States, and to assess the impact of SLEs by national site, symptoms, and ARV adherence concerns on QOL. The sample consisted of 704 participants. The total number of SLEs correlated significantly with the total number of symptoms, adherence concerns, and QOL (p ≤ .001). Overall, 27.2% of the variance in QOL was explained by the aforementioned variables. Although SLEs were of concern to PLWH, worries about ARV adherence were of even greater concern. Routine assessment of ARV concerns and SLEs can promote ongoing ARV adherence and improved QOL.
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Antirretrovirais/uso terapêutico , Infecções por HIV/tratamento farmacológico , Infecções por HIV/psicologia , Acontecimentos que Mudam a Vida , Adesão à Medicação/psicologia , Qualidade de Vida/psicologia , Adaptação Psicológica , Adulto , Idoso , Comparação Transcultural , Feminino , Infecções por HIV/etnologia , Inquéritos Epidemiológicos , Humanos , Masculino , Adesão à Medicação/etnologia , Pessoa de Meia-Idade , Porto Rico/epidemiologia , Perfil de Impacto da Doença , Fatores Socioeconômicos , África do Sul/epidemiologia , Estresse Psicológico/psicologia , Inquéritos e Questionários , Estados Unidos/epidemiologia , Adulto JovemRESUMO
PURPOSE: Human immunodeficiency virus (HIV) treatment self-efficacy is the confidence held by an individual in her or his ability to follow treatment recommendations, including specific HIV care such as initiating and adhering to antiretroviral therapy (ART). The purpose of this study was to explore the potential mediating role of treatment adherence self-efficacy in the relationships between Social Cognitive Theory constructs and self- reported ART adherence. DESIGN: Cross-sectional and descriptive. The study was conducted between 2009 and 2011 and included 1,414 participants who lived in the United States or Puerto Rico and were taking antiretroviral medications. METHODS: Social cognitive constructs were tested specifically: behaviors (three adherence measures each consisting of one item about adherence at 3-day and 30-day along with the adherence rating scale), cognitive or personal factors (the Center for Epidemiology Studies Depression Scale to assess for depressive symptoms, the 12-Item Short Form Health Survey (SF-12) to assess physical functioning, one item about physical condition, one item about comorbidity), environmental influences (the Social Capital Scale, one item about social support), and treatment self-efficacy (HIV Adherence Self-Efficacy Scale). Analysis included descriptive statistics and regression. RESULTS: The average participant was 47 years old, male, and a racial or ethnic minority, had an education of high school or less, had barely adequate or totally inadequate income, did not work, had health insurance, and was living with HIV/acquired immunodeficiency syndrome for 15 years. The model provided support for adherence self-efficacy as a robust predictor of ART adherence behavior, serving a partial mediating role between environmental influences and cognitive or personal factors. CONCLUSIONS: Although other factors such as depressive symptoms and lack of social capital impact adherence to ART, nurses can focus on increasing treatment self-efficacy through diverse interactional strategies using principles of adult learning and strategies to improve health literacy. CLINICAL RELEVANCE: Adherence to ART reduces the viral load thereby decreasing morbidity and mortality and risk of transmission to uninfected persons. Nurses need to use a variety of strategies to increase treatment self-efficacy.
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Fármacos Anti-HIV/administração & dosagem , Infecções por HIV/tratamento farmacológico , Adesão à Medicação/psicologia , Autoeficácia , Adolescente , Adulto , Idoso , Estudos Transversais , Demografia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Porto Rico , Fatores de Risco , Estados UnidosRESUMO
The goal of this study was to identify the baseline prevalence and effectiveness of anxiety self-management strategies in a convenience sample of persons living with HIV (PLWH; n = 343) in the United States, Puerto Rico, Kenya, and South Africa who reported HIV-related anxiety symptoms. Relationships between demographics and anxiety characteristics were determined, as was the effectiveness of self-care activities/behaviors to reduce anxiety. We found that the use of anxiety self-management strategies varied by gender and that ratings of effectiveness varied by country. Highest anxiety intensity scores were found in participants who were taking antiretroviral medications and who had undetectable viral loads. Forty-five percent of the persons with a diagnosis of AIDS reported anxiety symptoms. As HIV increases in areas of the world where self-care is the primary approach to managing HIV, additional research will be needed to address the effectiveness of cross-cultural differences in strategies for self-managing HIV-related anxiety.
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Ansiedade/prevenção & controle , Comparação Transcultural , Infecções por HIV/psicologia , Autocuidado , Adulto , África Subsaariana/epidemiologia , Idoso , Ansiedade/etnologia , Comorbidade , Feminino , Infecções por HIV/etnologia , Humanos , Masculino , Pessoa de Meia-Idade , Porto Rico/epidemiologia , Fatores de Risco , Fatores Sexuais , Estados Unidos/epidemiologiaRESUMO
BACKGROUND: Low functional health literacy has been related to poor viral control, and lower levels of ART adherence in people living with HIV/AIDS. Research in functional health literacy among people living with HIV/AIDS in Puerto Rico (PR) is an unexplored area. The purpose of this paper is to describe how the full-length Spanish Version of the Test of Functional Health Literacy in Adults (TOFHLA-S) scale was adapted to PR. METHODS: Thirty participants (women = 16, men = 14) completed a basic demographic questionnaire, the TOFHLA-S and participated in an interview. Analyses were performed to examine the information provided by participants and the internal consistency of the TOFHLA-S. RESULTS: The mean age was 47.7 years (range 34-77). Thirty-seven percent had less than 12 years of formal schooling and 43% reported having education above high school. Changes suggested by participants included: increasing font size from 14 to 16 points for better readability and changes/simplification of several words in order to make them colloquial and comprehensible for the PR context. The reliability coefficient obtained for this scale was strong (estimated alpha = 0.95) however, differences were observed by subtype: numeracy (estimated alpha(num) = .819 vs. comprehension (estimated alpha =. 953). CONCLUSIONS: Based on this process, we have adapted the original version of the TOFHLA-S and the new version of the full-length TOFHLA-S, PR is now valid for further research and testing levels of functional health literacy in a larger sample in PR.
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Infecções por HIV , Letramento em Saúde , Inquéritos e Questionários , Adulto , Idoso , Feminino , Humanos , Idioma , Masculino , Pessoa de Meia-Idade , Porto RicoRESUMO
This study examines healthcare providers' perceptions regarding experiences and factors that contribute to adherent and non-adherent behaviors to HIV treatment among women living with HIV infection in Puerto Rico and describes strategies implemented to improve adherence. Providers' accounts revealed that women with HIV infection are living "beyond their strengths" attempting to reconcile the burden of the illness and keep adherent. Factors putting women beyond their strengths and influencing non-adherence behavior were: gender-related demands, fear of disclosure, and treatment complexity. Strategies to improve adherence included: ongoing assessment, education, collaborative work, support groups, networking, disguising pills, readiness, and seeking medications outside their towns. Provider-patient interactions are critical for women's success and must assess all these factors in developing and providing health services.
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BACKGROUND: People living with HIV infection are confronted with physical and psychological symptoms that impact their quality of life. This study explored the symptom experience of people living with HIV infection in Puerto Rico and its correlation with quality of life. METHODS: A cross-sectional descriptive design was used to survey 44 men, women, and transgender people living with HIV infection. Measures included a demographic questionnaire, sign and symptom checklist, and a quality of life instrument. RESULTS: The sample was 50% male with a mean age of 42.1 years; the participants had been living with HIV infection an average for 9.8 years. The top five symptoms reported by the sample included: muscle aches (81.8%), depression (77.2%), weakness (70.5%), fear/worries (70.5), and difficulty concentrating (65.9%). Symptom frequency was significantly related to four dimensions of quality of life: overall function (r = -0.58), life satisfaction (r = -0.59), health worries (r = 0.32) and HIV medication worries (r = 0.59). The symptom experience was not related to financial worries, disclosure worries, or sexual functioning. Individuals who reported taking HIV medications reported significantly fewer symptoms than those not taking HIV medications (t = 3.061, df=42, p < 0.01). CONCLUSIONS: These results suggest that people living with HIV infection in Puerto Rico experience a wide array of physical and psychological symptoms and that these symptoms have a correlation with their perceived quality of life. Better management of symptoms may have an impact on perceived quality of life for people living with HIV infection.