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1.
JMIR Diabetes ; 9: e49491, 2024 Feb 09.
Artigo em Inglês | MEDLINE | ID: mdl-38335020

RESUMO

BACKGROUND: Patient engagement with secure messaging (SM) via digital patient portals has been associated with improved diabetes outcomes, including increased patient satisfaction and better glycemic control. Yet, disparities in SM uptake exist among older patients and racial and ethnic underserved groups. Care partners (family members or friends) may provide a means for mitigating these disparities; however, it remains unclear whether and to what extent care partners might enhance SM use. OBJECTIVE: We aim to examine whether SM use differs among older patients with diabetes based on the involvement of care partner proxies. METHODS: This is a substudy of the ECLIPPSE (Employing Computational Linguistics to Improve Patient-Provider Secure Emails) project, a cohort study taking place in a large, fully integrated health care delivery system with an established digital patient portal serving over 4 million patients. Participants included patients with type 2 diabetes aged ≥50 years, newly registered on the patient portal, who sent ≥1 English-language message to their clinician between July 1, 2006, and December 31, 2015. Proxy SM was identified by having a registered proxy. To identify nonregistered proxies, a computational linguistics algorithm was applied to detect words and phrases more likely to appear in proxy messages compared to patient-authored messages. The primary outcome was the annual volume of secure messages (sent or received); secondary outcomes were the length of time to the first SM sent by patient or proxy and the number of annual SM exchanges (unique message topics generating ≥1 reply). RESULTS: The mean age of the cohort (N=7659) at this study's start was 61 (SD 7.16) years; 75% (n=5573) were married, 15% (n=1089) identified as Black, 10% (n=747) Chinese, 12% (n=905) Filipino, 13% (n=999) Latino, and 30% (n=2225) White. Further, 49% (n=3782) of patients used a proxy to some extent. Compared to nonproxy users, proxy users were older (P<.001), had lower educational attainment (P<.001), and had more comorbidities (P<.001). Adjusting for patient sociodemographic and clinical characteristics, proxy users had greater annual SM volume (20.7, 95% CI 20.2-21.2 vs 10.9, 95% CI 10.7-11.2; P<.001), shorter time to SM initiation (hazard ratio vs nonusers: 1.30, 95% CI 1.24-1.37; P<.001), and more annual SM exchanges (6.0, 95% CI 5.8-6.1 vs 2.9, 95% CI 2.9-3.0, P<.001). Differences in SM engagement by proxy status were similar across patient levels of education, and racial and ethnic groups. CONCLUSIONS: Among a cohort of older patients with diabetes, proxy SM involvement was independently associated with earlier initiation and increased intensity of messaging, although it did not appear to mitigate existing disparities in SM. These findings suggest care partners can enhance patient-clinician telecommunication in diabetes care. Future studies should examine the effect of care partners' SM involvement on diabetes-related quality of care and clinical outcomes.

2.
J Am Geriatr Soc ; 72(6): 1824-1830, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38344822

RESUMO

BACKGROUND: Community-dwelling older adults often serve as caregivers despite having their own health concerns and disabilities, yet little is known about their care needs. METHODS: Cross-sectional analysis including community-dwelling U.S. adults over age 60 years who self-identified as caregivers in the National Social Life, Health, and Aging Project in 2015-2016. Caregiving was defined by self-reported assistance of another adult with day-to-day activities due to age or disability; overlapping care-receiving was defined by simultaneous receipt of help for at least one activity of daily living (ADL) or independent ADL (IADL). Multivariable logistic regression models examined attributes associated with overlapping care-receiving among older caregivers, adjusted for caregiver characteristics (age, gender, spousal caregiving, self-reported physical and mental health, cognitive function, and household assets). RESULTS: Among the 444 caregivers, the mean age was 67.8 (SD 0.29) years, 55.8% were women, 78.1% were non-Hispanic White, 54.7% self-identified as primary caregivers, and 30.7% were caring for a spouse. Thirty-two percent of older caregivers were caregiving while themselves receiving assistance with at least one ADL or IADL. Thirty-four percent of caregivers reported <$50,000 in household assets and 10% did not answer the question. Given prior research that supports that most nonrespondents fall into the low-income group, subjects were combined. Analyses with and without nonrespondents did not substantially change the results. Compared to caregivers who were not simultaneously receiving care, caregivers reporting overlapping care-receiving had greater odds of being older (AOR 1.30, 95% confidence interval [CI] [1.14, 1.48] per each 5-year age increase), caregiving for a spouse (AOR 1.93, 95% CI [1.20, 3.13]), having limited household assets (AOR 2.10, 95% CI [1.17, 3.80], for <$50,000 compared to ≥$50,000), and having poor or fair self-reported physical health (AOR 2.94, 95% CI [1.43, 6.02]). CONCLUSIONS: Over 30% of older adult caregivers report simultaneously receiving care for their own daily activities. Older caregivers who receive care are more likely to be older, spousal caregivers, and have limited assets and worse physical health. Targeted strategies are needed to support older caregivers who are uniquely vulnerable due to their overlapping care needs.


Assuntos
Atividades Cotidianas , Cuidadores , Vida Independente , Humanos , Feminino , Masculino , Cuidadores/psicologia , Cuidadores/estatística & dados numéricos , Idoso , Estudos Transversais , Estados Unidos , Pessoa de Meia-Idade , Idoso de 80 Anos ou mais , Pessoas com Deficiência/estatística & dados numéricos , Autorrelato
3.
Glob Public Health ; 18(1): 2242458, 2023 01.
Artigo em Inglês | MEDLINE | ID: mdl-37671506

RESUMO

ABSTRACTThis study aimed to explore the firsthand experiences of informal primary caregivers of women with female genital fistula in Uganda. Caregivers that accompanied women for surgery at Mulago National Teaching and Referral Hospital were recruited between January and September 2015. Caregivers participated in in-depth interviews and focus groups. Data were analysed thematically and informed adaptation of a conceptual framework. Of 43 caregivers, 84% were female, 95% family members, and most married and formally employed. Caregivers engaged in myriad personal care and household responsibilities, and described being on call for an average of 22.5 h per day. Four overlapping themes emerged highlighting social, economic, emotional, and physical experiences/consequences. The caregiving experience was informed by specific caregiver circumstances (e.g. personal characteristics, care needs of their patient) and dynamic stressors/supports within the caregiver's social context. These results demonstrate that caregivers' lived social, economic, emotional, and physical experiences and consequences are influenced by both social factors and individual characteristics of both the caregiver and their patient. This study may inform programmes and policies that increase caregiving supports while mitigating caregiving stressors to enhance the caregiving experience, and ultimately ensure its feasibility, particularly in settings with constrained resources.


Assuntos
Cuidadores , Fístula , Feminino , Humanos , Masculino , Uganda , Pesquisa Qualitativa , Genitália Feminina
4.
J Pain Symptom Manage ; 65(3): 173-182, 2023 03.
Artigo em Inglês | MEDLINE | ID: mdl-36503155

RESUMO

CONTEXT: Palliative care offers patient and family centered approaches that may mitigate risk of caregiver burden and poor mood. OBJECTIVES: To determine whether a palliative care intervention (CONNECT) improved burden, mood, and self-efficacy among caregivers of patients with advanced cancer. METHODS: In this cluster randomized trial, patients and their caregivers were recruited from 17 Oncology clinics in Pennsylvania. Participants attended nurse-led monthly visits, addressing patient symptoms, goals of care, and advance care planning. At baseline and three months, we measured caregiver burden using Zarit Burden Interview (ZBI-12; range 0-48), caregiver anxiety and depression using Hospital Anxiety and Depression Scales (HADS-A, range 0-21; HADS-D, range 0-21). We measured caregiver self-efficacy at three months using Caregiver Inventory (CGI; range 0-189). RESULTS: We enrolled 441 caregivers and 381 completed three-month assessments. We found no significant differences in caregiver burden (adjusted mean difference -0.39; 95% CI -1.07-0.29, P = 0.90), depression (adjusted mean difference -0.22, 95% CI -0.97-0.55, P = 0.26), or anxiety (adjusted mean difference 0.09; 95% CI -1.25-1.43, P = 0.58), between the intervention and standard care at three months. Caregiver self-efficacy was higher at three months in the intervention compared to standard care (adjusted mean difference 9.36; 95% CI 0.95-17.77, P = 0.030). CONCLUSION: Caregivers in CONNECT did not experience improved burden or mood, however, they reported higher self-efficacy compared to caregivers receiving standard care. This study highlights the need for strategies to optimize caregiver outcomes in palliative care interventions.


Assuntos
Cuidadores , Neoplasias , Humanos , Qualidade de Vida , Neoplasias/terapia , Cuidados Paliativos , Pacientes
5.
Fam Syst Health ; 40(2): 268-273, 2022 06.
Artigo em Inglês | MEDLINE | ID: mdl-35549487

RESUMO

INTRODUCTION: The COVID-19 pandemic has altered access to health care; it remains unclear how patients with chronic illness and disability and their family caregivers are adapting to these changes. In this study, we examined changes in family caregiver roles helping care recipients with chronic illness and disability navigate health care needs during the COVID-19 pandemic. METHODS: From April 15 to May 27, 2020, we distributed online and telephone surveys to family caregiver members of a population-based regional research registry. Caregivers reported whether they were helping "more," "less," or the "same" with ten health care activities (e.g., filling prescriptions, attending medical appointments) now, compared to before the coronavirus pandemic. Using multivariable logistic regression models, we examined caregiver and caregiving context characteristics associated with helping more with 1 or more health care activities. RESULTS: Of 561 caregiver respondents, mean age was 59 years, 76% were women, and 56% co-resided with care recipients. Many caregivers (59%) reported increased help with 1 or more health care activities since the pandemic. Caregivers reported greater help getting medical supplies (31%) and attending care recipients' phone (21%) and video (16%) medical appointments. Women (OR 1.55; 95% CI 1.02-2.36) and caregivers assisting with short-term physical conditions were more likely to help more with 1 or more health care activities (OR 2.81; 95% CI 1.20-6.59). DISCUSSION: Family caregivers reported their responsibilities helping care recipients with chronic conditions and disabilities stay engaged with health care increased since the pandemic. Providers and health systems should consider targeted strategies to support caregivers helping vulnerable patients access necessary care. (PsycInfo Database Record (c) 2022 APA, all rights reserved).


Assuntos
COVID-19 , Cuidadores , COVID-19/epidemiologia , Doença Crônica , Atenção à Saúde , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Pandemias
6.
J Gen Intern Med ; 37(14): 3611-3619, 2022 11.
Artigo em Inglês | MEDLINE | ID: mdl-35167064

RESUMO

BACKGROUND: The homeless population is aging, with early onset of cognitive and functional impairments. It is unclear whether older homeless adults receive caregiving assistance that could prevent long-term disability. OBJECTIVE: We describe characteristics of older homeless-experienced adults with caregiving need and determine factors associated with having unmet need. DESIGN AND PARTICIPANTS: Cross-sectional analysis of a longitudinal study, Health Outcomes in People Experiencing Homelessness in Older Middle Age (HOPE HOME), examining health, life course events, and functional status among older homeless-experienced (i.e., currently and recently homeless) adults. We recruited 350 homeless adults (July 2013-June 2014) and an additional 100 (August 2017 to July 2018) in Oakland, California; this study includes 303 participants who completed caregiving interviews. MEASUREMENTS: We defined caregiving need as difficulty with activities of daily living (ADLs), instrumental activities of daily living (IADLs), falls, Short Physical Performance Battery (SPPB) score < 10, or Modified Mini-Mental State (3MS) exam impairment. We defined unmet need as having caregiving need and reporting not receiving caregiving assistance in the last 6 months. Using logistic regression, we analyzed associations between respondent characteristics and unmet caregiving need. RESULTS: Among 303 participants, the mean age was 61.3 ± 5.0 years; 73% were men and 82% were Black. Eighty-one percent had caregiving needs, and in 82% of those, their caregiving needs were unmet. Better self-rated health (AOR 2.13, CI [1.02-4.46], p = 0.04) and being a man (AOR 2.30, CI [1.12-4.69], p = 0.02) were associated with higher odds of unmet need. Moderate or high-risk substance use (AOR 0.47, CI [0.23, 0.94], p = 0.03) was associated with lower odds of unmet need. CONCLUSIONS: Older homeless-experienced adults have high prevalence of unmet caregiving need. Interventions that increase caregiving access for homeless-experienced individuals may help avoid poor health outcomes and costly long-term-care needs due to untreated disabilities.


Assuntos
Pessoas Mal Alojadas , Transtornos Relacionados ao Uso de Substâncias , Pessoa de Meia-Idade , Masculino , Adulto , Humanos , Idoso , Feminino , Estudos Transversais , Atividades Cotidianas , Estudos Longitudinais , Pessoas Mal Alojadas/psicologia , Transtornos Relacionados ao Uso de Substâncias/epidemiologia
7.
Patient Educ Couns ; 105(6): 1663-1670, 2022 06.
Artigo em Inglês | MEDLINE | ID: mdl-34756473

RESUMO

OBJECTIVE: To explore physician leaders' perspectives on processes and priorities for engaging with caregivers in their clinical practices as well as within their safety net health systems. METHODS: We conducted in-depth semi-structured interviews with primary care physicians in care management leadership at three California safety net health systems. Interviews explored physicians' experiences managing medically and socially complex patients with caregivers. Using thematic analysis, two qualitative researchers independently analyzed interview transcripts and established consensus with the broader research team through iterative input to derive major themes. RESULTS: Fifteen physicians completed interviews. Nine participants were women, 8 were White and 10 reported Spanish language proficiency. Participant interviews generated six major themes: challenges uncovering caregiver identities, recognizing variation in caregivers' roles, adapting visit communication strategies to include caregivers, engaging caregivers in patient care, and caring for the caregiver. CONCLUSIONS: Engaging caregivers is challenging given the limited recognition of caregiver involvement in patient care by health systems. Adapting visit communication to include caregivers requires bridging language and literacy barriers. PRACTICE IMPLICATIONS: Developing mechanisms to enable the consistent identification of patients' caregivers, facilitate ongoing communication with caregivers, and extend support for them could improve outcomes for vulnerable patients and their families.


Assuntos
Cuidadores , Médicos , Comunicação , Feminino , Humanos , Masculino , Assistência ao Paciente , Pesquisa Qualitativa
8.
J Geriatr Oncol ; 12(5): 771-778, 2021 06.
Artigo em Inglês | MEDLINE | ID: mdl-33478890

RESUMO

OBJECTIVES: Family caregiver burden among older adults with advanced cancer remains poorly understood. We sought to (1) identify patient factors associated with caregiver burden and (2) examine how amount of time caregiving modifies these relationships. METHODS: Cross-sectional analysis of baseline data from a cluster-randomized palliative care intervention trial including patients with advanced cancer and their family caregivers, recruited from 17 oncology practices in Pennsylvania. Caregiver burden was measured using Zarit Burden Interview (ZBI-12; range 0-48). Patient factors included functional status (Eastern Cooperative Oncology Group), symptom burden (Edmonton Symptom Assessment Scale), anxiety and depression (Hospital Anxiety and Depression Scale), and quality of life (Functional Assessment of Chronic Illness Therapy - Palliative Care). Using adjusted multivariable regression, we analyzed (1) independent associations between patient factors and caregiver burden and (2) how weekly caregiving hours modified these relationships. RESULTS: Among 441 patient-caregiver dyads, mean patient age was 70 ± 10 and caregiver age was 62 ± 13 years. Most caregivers (59%) were patients' partners. Caregivers reported 44.5 ± 53.5 average hours spent caregiving weekly; mean ZBI-12 scores were 10.3 ± 7.3. Worse patient functional status (ß = 4.20, p < 0.01), poorer quality of life (ß = -0.07, p < 0.01), more anxiety (ß = 0.33, p < 0.01) and depression (ß = 0.33, p < 0.01) were associated with higher caregiver burden; caregiving hours did not affect these relationships. CONCLUSIONS: In advanced cancer, poor patient physical and mental health is associated with higher caregiver burden regardless of hours caregiving; future studies should examine interventions tailored to alleviate caregiver burden for this group.


Assuntos
Neoplasias , Qualidade de Vida , Idoso , Sobrecarga do Cuidador , Cuidadores , Efeitos Psicossociais da Doença , Estudos Transversais , Humanos , Neoplasias/terapia , Inquéritos e Questionários
9.
J Biomed Inform ; 113: 103658, 2021 01.
Artigo em Inglês | MEDLINE | ID: mdl-33316421

RESUMO

OBJECTIVE: In the National Library of Medicine funded ECLIPPSE Project (Employing Computational Linguistics to Improve Patient-Provider Secure Emails exchange), we attempted to create novel, valid, and scalable measures of both patients' health literacy (HL) and physicians' linguistic complexity by employing natural language processing (NLP) techniques and machine learning (ML). We applied these techniques to > 400,000 patients' and physicians' secure messages (SMs) exchanged via an electronic patient portal, developing and validating an automated patient literacy profile (LP) and physician complexity profile (CP). Herein, we describe the challenges faced and the solutions implemented during this innovative endeavor. MATERIALS AND METHODS: To describe challenges and solutions, we used two data sources: study documents and interviews with study investigators. Over the five years of the project, the team tracked their research process using a combination of Google Docs tools and an online team organization, tracking, and management tool (Asana). In year 5, the team convened a number of times to discuss, categorize, and code primary challenges and solutions. RESULTS: We identified 23 challenges and associated approaches that emerged from three overarching process domains: (1) Data Mining related to the SM corpus; (2) Analyses using NLP indices on the SM corpus; and (3) Interdisciplinary Collaboration. With respect to Data Mining, problems included cleaning SMs to enable analyses, removing hidden caregiver proxies (e.g., other family members) and Spanish language SMs, and culling SMs to ensure that only patients' primary care physicians were included. With respect to Analyses, critical decisions needed to be made as to which computational linguistic indices and ML approaches should be selected; how to enable the NLP-based linguistic indices tools to run smoothly and to extract meaningful data from a large corpus of medical text; and how to best assess content and predictive validities of both the LP and the CP. With respect to the Interdisciplinary Collaboration, because the research required engagement between clinicians, health services researchers, biomedical informaticians, linguists, and cognitive scientists, continual effort was needed to identify and reconcile differences in scientific terminologies and resolve confusion; arrive at common understanding of tasks that needed to be completed and priorities therein; reach compromises regarding what represents "meaningful findings" in health services vs. cognitive science research; and address constraints regarding potential transportability of the final LP and CP to different health care settings. DISCUSSION: Our study represents a process evaluation of an innovative research initiative to harness "big linguistic data" to estimate patient HL and physician linguistic complexity. Any of the challenges we identified, if left unaddressed, would have either rendered impossible the effort to generate LPs and CPs, or invalidated analytic results related to the LPs and CPs. Investigators undertaking similar research in HL or using computational linguistic methods to assess patient-clinician exchange will face similar challenges and may find our solutions helpful when designing and executing their health communications research.


Assuntos
Letramento em Saúde , Médicos , Humanos , Aprendizado de Máquina , Processamento de Linguagem Natural , Redação
10.
J Am Med Inform Assoc ; 28(6): 1252-1258, 2021 06 12.
Artigo em Inglês | MEDLINE | ID: mdl-33236117

RESUMO

The substantial expansion of secure messaging (SM) via the patient portal in the last decade suggests that it is becoming a standard of care, but few have examined SM use longitudinally. We examined SM patterns among a diverse cohort of patients with diabetes (N = 19 921) and the providers they exchanged messages with within a large, integrated health system over 10 years (2006-2015), linking patient demographics to SM use. We found a 10-fold increase in messaging volume. There were dramatic increases overall and for patient subgroups, with a majority of patients (including patients with lower income or with self-reported limited health literacy) messaging by 2015. Although more physicians than nurses and other providers messaged throughout the study, the distribution of health professions using SM changed over time. Given this rapid increase in SM, deeper understanding of optimizing the value of patient and provider engagement, while managing workflow and training challenges, is crucial.


Assuntos
Diabetes Mellitus , Letramento em Saúde , Portais do Paciente , Estudos de Coortes , Correio Eletrônico , Humanos
11.
J Med Internet Res ; 22(7): e18466, 2020 07 20.
Artigo em Inglês | MEDLINE | ID: mdl-32706709

RESUMO

BACKGROUND: Patients within safety-net settings are less likely to access health information on patient portals, despite expressed interest. Family and friends are important resources to assist these patients (ie, Medicaid recipients, older patients, patients with limited English proficiency) in navigating health systems, and provider support of the use of patient portals among these groups may also facilitate caregivers' use of their patients' portal. OBJECTIVE: Because safety net providers work closely with caregivers to care for their patients, we used qualitative methods to explore safety net providers' perspectives on portal use among caregivers for their patients, especially as there is limited literature about caregivers' use of portals in the safety net. METHODS: We conducted 45- to 60-min semistructured telephone interviews with providers from three large California safety-net health systems. The interviews focused on providers' experiences with caregivers, caregiver roles, and how the portal could be leveraged as a tool to support caregivers in their responsibilities. A total of three coders analyzed the interview transcripts using both deductive and inductive approaches and established a consensus regarding major themes. RESULTS: Of the 16 participants interviewed, 4 specialized in geriatrics, and all held a leadership or administrative role. We described themes highlighting providers' recognition of potential benefits associated with caregiver portal use and specific challenges to caregiver engagement. CONCLUSIONS: Providers recognized the potential for portals to improve information delivery and communication by helping caregivers assist socially and medically complex patients in the safety net. Providers in safety net sites also discussed a clear need for better ways to keep in touch with patients and connect with caregivers, yet security and privacy are perhaps of higher importance in these settings and may pose challenges to portal adoption. They noted that caregivers of patients in the safety net likely face similar communication barriers as patients, especially with respect to digital literacy, health literacy, and English proficiency. Further research is needed to assess and support caregivers' interest and ability to access portals across barriers in health and digital literacy, and English proficiency. Portal platforms and health systems must also address specific strategies to uphold patient preferences while maintaining privacy and security.


Assuntos
Cuidadores/normas , Portais do Paciente/normas , Médicos/normas , Atenção Primária à Saúde/métodos , Provedores de Redes de Segurança/normas , Feminino , Humanos , Entrevistas como Assunto , Masculino
12.
J Gen Intern Med ; 34(11): 2490-2496, 2019 11.
Artigo em Inglês | MEDLINE | ID: mdl-31428986

RESUMO

BACKGROUND: Little is known about patients who have caregiver proxies communicate with healthcare providers via portal secure messaging (SM). Since proxy portal use is often informal (e.g., sharing patient accounts), novel methods are needed to estimate the prevalence of proxy-authored SMs. OBJECTIVE: (1) Develop an algorithm to identify proxy-authored SMs, (2) apply this algorithm to estimate predicted proxy SM (PPSM) prevalence among patients with diabetes, and (3) explore patient characteristics associated with having PPSMs. DESIGN: Retrospective cohort study. PARTICIPANTS: We examined 9856 patients from Diabetes Study of Northern California (DISTANCE) who sent ≥ 1 English-language SM to their primary care physician between July 1, 2006, and Dec. 31, 2015. MAIN MEASURES: Using computational linguistics, we developed ProxyID, an algorithm that identifies phrases frequently found in registered proxy SMs. ProxyID was validated against blinded expert categorization of proxy status among an SM sample, then applied to identify PPSM prevalence across patients. We examined patients' sociodemographic and clinical characteristics according to PPSM penetrance, "none" (0%), "low" (≥ 0-50%), and "high" (≥ 50-100%). KEY RESULTS: Only 2.3% of patients had ≥ 1 registered proxy-authored SM. ProxyID demonstrated moderate agreement with expert classification (Κ = 0.58); 45.7% of patients had PPSMs (40.2% low and 5.5% high). Patients with high percent PPSMs were older than those with low percent and no PPSMs (66.5 vs 57.4 vs 56.2 years, p < 0.001) had higher rates of limited English proficiency (16.1% vs 3.2% vs 3.5%, p < 0.05), lower self-reported health literacy (3.83 vs 4.43 vs 4.44, p < 0.001), and more comorbidities (Charlson index 3.78 vs 2.35 vs 2.18, p < 0.001). CONCLUSIONS: Among patients with diabetes, informal proxy SM use is more common than registered use and prevalent among socially and medically vulnerable patients. Future research should explore whether proxy portal use improves patient and/or caregiver outcomes and consider policies that integrate caregivers in portal communication.


Assuntos
Cuidadores/estatística & dados numéricos , Diabetes Mellitus Tipo 2/terapia , Correio Eletrônico/estatística & dados numéricos , Relações Médico-Paciente , Adulto , Idoso , Confidencialidade , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Procurador , Estudos Retrospectivos
13.
J Gen Intern Med ; 34(9): 1744-1750, 2019 09.
Artigo em Inglês | MEDLINE | ID: mdl-31236893

RESUMO

BACKGROUND: Although the family caregiver workforce is increasingly diverse, little is known about culturally and linguistically diverse caregivers and patients for whom they care. Caregiver roles include communicating with health care teams on behalf of patients with language barriers. OBJECTIVE: Our objective is to describe characteristics and experiences of caregivers for patients with limited English proficiency (LEP) immediately following hospital discharge. DESIGN: Cross-sectional. PARTICIPANTS: Primary informal caregivers for Chinese- and Spanish-speaking patients with LEP discharged from a large academic medical center's orthopedic surgery, general surgery, and cardiovascular inpatient floors from June 2012 to August 2013. MAIN MEASURES: Bilingual-bicultural research assistants conducted baseline structured interviews with patients or surrogates in the hospital, and 3 weeks after discharge, gathering demographic and health information. They then interviewed by phone informal caregivers, identified by patients, to determine caregiving experiences. KEY RESULTS: One hundred fifty-eight caregivers were interviewed post-discharge. Two-thirds (69.0%) were adults caring for parents or grandparents, and 20.9% were spouses or partners. Sixty-nine (43.7%) caregivers had LEP themselves, yet only 12% of patients reported having access to professional interpreters at the time discharge instructions were provided. Ninety percent reported performing three or more caregiving roles for the patient (helping at home, helping with medical decisions, helping with medical forms, helping communicate with medical staff, and talking with doctors about medical care). Forty percent reported moderate/high levels of perceived stress (some, most, or all of the time) caring for the patient. Multivariate regression revealed caregivers for Chinese-speaking patients, and those for patients discharged to another hospital were most likely to report moderate/high levels of perceived stress. CONCLUSION: Culturally and linguistically diverse caregivers perform multiple roles caring for patients with LEP, often have LEP themselves, and experience notable levels of stress. These results also demonstrate an opportunity to expand the use of professional interpreters at hospital discharge to avoid communication errors.


Assuntos
Cuidadores/tendências , Serviços de Assistência Domiciliar/tendências , Hospitalização/tendências , Proficiência Limitada em Inglês , Multilinguismo , Transferência de Pacientes/tendências , Adulto , Assistência ao Convalescente/normas , Assistência ao Convalescente/tendências , Idoso , Idoso de 80 Anos ou mais , Cuidadores/psicologia , Cuidadores/normas , Estudos Transversais , Feminino , Seguimentos , Serviços de Assistência Domiciliar/normas , Humanos , Masculino , Pessoa de Meia-Idade , Alta do Paciente/normas , Alta do Paciente/tendências , Transferência de Pacientes/normas , Adulto Jovem
14.
J Immigr Minor Health ; 21(1): 189-197, 2019 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-29603087

RESUMO

Children in immigrant families are less likely to screen positive with the Children with Special Health Care Needs Screener (CSHCN-S). This may indicate that children in immigrant families are healthier or require fewer health services than non-immigrant peers. Alternatively, the screener may under-identify special healthcare needs in this population. Using the 2011-2012 National Survey of Children's Health, we examined the prevalence of a positive CSHCN-S among children from first, second, and third generation households with an equivalent number of currently diagnosed chronic conditions (0, 1, 2+). Multivariate analyses controlled for sociodemographic factors. Among children with an equivalent number of chronic conditions, fewer children from first and second generation households screened positive with the CSHCN-S relative to children from third generation households. This association remained after adjusting for covariates. The CSHCN Screener may under-identify children from immigrant households, allowing for missed opportunities to allocate health resources.


Assuntos
Saúde da Criança/normas , Crianças com Deficiência , Emigrantes e Imigrantes , Programas de Rastreamento/normas , Inquéritos e Questionários/normas , Adolescente , Criança , Pré-Escolar , Doença Crônica , Feminino , Humanos , Lactente , Masculino , Programas de Rastreamento/métodos , Reprodutibilidade dos Testes , Fatores Socioeconômicos , Estados Unidos
15.
J Immigr Minor Health ; 20(2): 327-333, 2018 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-28382427

RESUMO

Our objective was to examine refugees' acute care use early in resettlement. We conducted a retrospective cohort study of acute care use, emergency room and hospital visits, by adult refugees arriving in Southern Connecticut between 2/1/2013 and 2/1/2015. We examined associations between any acute care use and collected demographic as well as health characteristics. Of the 248 refugees in our sample, 57% had a medical evaluation within 30 days of arrival. 102 (41%) had at least one acute care visit within 8 months of arrival. Male sex (OR 1.90, 95% CI 1.09-3.30) and prior history of hypertension (OR 2.87, 95% CI 1.06-7.33) were associated with greater likelihood of an acute care visit within 8 months of arrival, while having a medical evaluation within 30 days of arrival was associated with lower likelihood (OR 0.56, 95% CI 0.32-0.98). Designing systems to ensure timely evaluations of newly arrived refugees may reduce frequent acute care utilization.


Assuntos
Nível de Saúde , Saúde Mental/etnologia , Aceitação pelo Paciente de Cuidados de Saúde/etnologia , Refugiados/estatística & dados numéricos , Adulto , Fatores Etários , Connecticut/epidemiologia , Feminino , Humanos , Masculino , Estudos Retrospectivos , Fatores Sexuais , Fatores Socioeconômicos
16.
Am J Public Health ; 106(7): 1231-2, 2016 07.
Artigo em Inglês | MEDLINE | ID: mdl-27196649

RESUMO

OBJECTIVES: To evaluate publicly available data sets to determine their utility for studying refugee health. METHODS: We searched for keywords describing refugees in data sets within the Society of General Internal Medicine Dataset Compendium and the Inter-University Consortium for Political and Social Research database. We included in our analysis US-based data sets with publicly available documentation and a self-defined, health-related focus that allowed for an examination of patient-level factors. RESULTS: Of the 68 data sets that met the study criteria, 37 (54%) registered keyword matches related to refugees, but only 2 uniquely identified refugees. CONCLUSIONS: Few health data sets identify refugee status among participants, presenting barriers to understanding refugees' health and health care needs. PUBLIC HEALTH IMPLICATIONS: Information about refugee status in national health surveys should include expanded demographic questions and focus on mental health and chronic disease.


Assuntos
Inquéritos Epidemiológicos/métodos , Inquéritos Epidemiológicos/normas , Refugiados/estatística & dados numéricos , Doença Crônica/etnologia , Humanos , Saúde Mental/etnologia , Fatores Socioeconômicos , Estados Unidos/epidemiologia
17.
J Pediatr Surg ; 38(4): 560-4, 2003 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-12677566

RESUMO

PURPOSE: The goal of this study was to (1) determine parents access to and use of the Internet for information relating to their child's health; (2) investigate parents methods of searching for such information; and (3) evaluate the information found in relation to its readability, accuracy, and influence. METHODS: A study was conducted of 150 parents of outpatients in the Pediatric Surgery Clinic of a local Children's Hospital. Parents completed study surveys over a 6-week time frame. RESULTS: All parents (150 of 150, 100%) completed the surveys. The median age of the parents was 35 years, 83% (124 of 150) were mothers, and most (32%) attained a high school diploma. Of the 128 parents having Internet access, 71% used the Internet to search for health-related information. A majority of parents, 98%, agreed or somewhat agreed that the information they found was comprehensible and helpful. All respondents at least somewhat trusted information found, and 52% were at least somewhat influenced by online information when making a medical decision. CONCLUSIONS: Many parents use the Internet for additional medical information, but they do not access this information frequently. The overwhelmingly positive impression of online health information suggests parents are unaware of the dangers of encountering misleading sources, an issue of special concern when considering the amount of influence this information carries. A movement must be made to create uniform guidelines for health information on the Internet. In the meantime, pediatric surgeons must take a role in guiding parents toward accurate online sources and becoming more Internet proficient themselves.


Assuntos
Proteção da Criança , Internet/estatística & dados numéricos , Pais/psicologia , Adolescente , Adulto , Idoso , Criança , Coleta de Dados , Escolaridade , Feminino , Conhecimentos, Atitudes e Prática em Saúde , Hospitais Pediátricos , Humanos , Masculino , Pessoa de Meia-Idade , New York , Pacientes Ambulatoriais , Charlatanismo , Centro Cirúrgico Hospitalar , Confiança
18.
Heart Surg Forum ; 6(6): E111-9, 2003.
Artigo em Inglês | MEDLINE | ID: mdl-14721995

RESUMO

PURPOSE: The primary goal of this study was to (1) determine patients' access to and use of the Internet for healthrelated information before and after endoscopic atraumatic coronary artery bypass (Endo-ACAB) surgery, (2) investigate patients' methods of searching for such information, and (3) suggest future improvements for Internet-based patient education. The secondary goal of this study was to determine (1) patients' health-related quality of life and (2) degree of satisfaction following the Endo-ACAB procedure. METHODS: A follow-up study was conducted of 50 consecutive patients who had undergone Endo-ACAB procedures at the Center for Less Invasive Cardiac Surgery and Robotic Heart Surgery in Buffalo, New York. Study surveys were designed cooperatively by a communication scientist specializing in Internet studies and cardiac surgeons. Patients completed surveys over a period of 18 months, from January 2001 to June 2002. RESULTS: All 50 patients (100%) in the targeted study group completed the survey. Forty-four (88%) of these respondents reported having Internet access. The Web was cited as the most popular source of initial information on Endo-ACAB, with 36% of patients (18) first learning about the procedure through an Internet search. All 44 patients with Internet access used the Web as an additional source of information before surgery, but only 20% (7/35) did so after surgery. Most patients (91%, 40/44) felt that their surgeon should develop a Web site to detail the Endo-ACAB procedure. An investigation of patient quality of life showed that 96% of patients were not experiencing any symptoms related to t heir surgery. All 50 patients reported high degrees of satisfaction with the Endo-ACAB procedure, and 98% (49) said that they would recommend the surgery to someone else. CONCLUSION: A vast majority of patients are realizing the benefits of the Internet as a tool to educate themselves, both before and after surgery. The request by an overwhelming majority of patients that surgeons develop Web sites, however, shows that patients may not be completely satisfied with the current form or content of health sites on the Internet. Surgeons will see the benefits of Web-based education only when they ensure that their patients have access to adequate and credible health-related information. The early results of robotic surgery suggest a promising future and the need to investigate the role of the Internet in its growth.


Assuntos
Ponte de Artéria Coronária/métodos , Serviços de Informação/estatística & dados numéricos , Internet/estatística & dados numéricos , Satisfação do Paciente , Robótica , Idoso , Idoso de 80 Anos ou mais , Ponte de Artéria Coronária/estatística & dados numéricos , Feminino , Seguimentos , Humanos , Masculino , Pessoa de Meia-Idade , Educação de Pacientes como Assunto/métodos , Qualidade de Vida
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