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OBJECTIVE: Low-income White and older adults of color face barriers to depression care. Our purpose is to describe the methods and challenges encountered during the implementation of a randomized controlled trial to test the effectiveness of a peer support depression care intervention for low-income White and older adults of color during the COVID-19 pandemic. METHODS: Peer Enhanced Depression Care (Peers) is an 8-week community-based intervention that uses peer mentors who are trained and supervised to provide social support and self-care skills to depressed older adults. The effectiveness of the intervention in reducing depression will be evaluated by following a sample of older adults recruited in the community over a 12-month period. Target enrollment is 160 older adults. We hypothesize that participants randomized to the Peer Enhanced Depression Care intervention will experience greater decrease in depressive symptoms compared to participants randomized to the social interaction control. We provide lessons learned regarding the recruitment of BIPOC and White low-income older adults and peer mentors during the COVID-19 pandemic. RESULTS: Recruitment challenges occurred in primary care clinics that were unable to accommodate recruitment efforts during the pandemic. This led to focused outreach to community-based organizations serving older adults. Challenges to participant recruitment have included barriers related to stigma, distrust, as well as unfamiliarity with research. Peer mentor recruitment was facilitated by existing government-supported resources. CONCLUSIONS: This study will provide knowledge regarding the effectiveness, mechanism, and processes of delivering an informal psychosocial intervention such as peer support to a vulnerable older adult population.
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COVID-19 , Depressão , Humanos , Idoso , Depressão/terapia , Pandemias , Aconselhamento , Grupo AssociadoRESUMO
OBJECTIVE: Parkinson's disease (PD) is a progressive neurodegenerative disease that can reduce quality of life (QOL). Previous research has explored patient specific factors that influence QOL; but understanding external factors that may also affect patient QOL, such as caregiver characteristics, can provide additional intervention targets that may improve QOL for both the person with PD and their caregiver. METHODS: We conducted a systematic review of existing literature on caregiver factors that are related to QOL for the person with PD. We developed a tailored search strategy in six databases and performed a screening procedure according to PRISMA guidelines. We synthesized findings from articles that met inclusion criteria using a narrative approach and identified themes categorizing caregiver factors associated with PD QOL. RESULTS: We found 32 full-text articles that fulfilled the inclusion criteria and passed the quality appraisal. Seven themes were identified, including: (1) burden, (2) strain, (3) QOL and satisfaction, (4) demographic factors, (5) psychological factors, (6) relationship factors, and (7) caregiver input. CONCLUSIONS: Our review presents critical insights into the role of the caregiver in the QOL of a person with PD. Findings reveal several targets for intervention to improve QOL in this population.
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Doenças Neurodegenerativas , Doença de Parkinson , Humanos , Qualidade de Vida/psicologia , Doença de Parkinson/psicologia , Cuidadores/psicologia , Depressão/psicologiaRESUMO
OBJECTIVES: The aim of this study is to present an explanatory model of hearing loss in the Bering Strait region of Alaska in order to contextualize the results of a cluster randomized trial and propose implications for regional hearing-related health care. DESIGN: To promote ecological validity, or the generalizability of trial findings to real world experiences, qualitative methods (focus groups and interviews) were used within a mixed methods cluster randomized trial evaluating school hearing screening and follow-up processes in 15 communities in the Bering Strait region of Alaska. Focus groups were held between April and August 2017, and semistructured interviews were conducted between December 2018 and August 2019. Convenience sampling was used for six of the 11 focus groups to capture broad community feedback. Purposive sampling was used for the remaining five focus groups and for all interviews to capture a variety of experiences with hearing loss. Audio recordings of focus groups and interviews were transcribed, and both notes and transcripts were deidentified. All notes and transcripts were included in the analysis. The constant comparative method was used to develop a codebook by iteratively moving between transcripts and preliminary themes. Researchers then used this codebook to code data from all focus groups and interviews using qualitative analysis software (NVIVO 12, QSR International) and conducted thematic analyses to distill the findings presented in this article. RESULTS: Participants in focus groups (n = 116) and interviews (n = 101) shared perspectives in three domains: etiology, impact, and treatment of hearing loss. Regarding etiology, participants emphasized noise-induced hearing loss but also discussed infection-related hearing loss and various causes of ear infections. Participants described the impact of hearing loss on subsistence activities, while also detailing social, academic, and economic consequences. Participants described burdensome treatment pathways that are repetitive and often travel and time intensive. Communication breakdowns within these pathways were also described. Some participants spoke positively of increased access via onsite hearing health care services in "field clinics" as well as via telemedicine services. Others described weaknesses in these processes (infrequent field clinics and communication delays in telemedicine care pathways). Participants also described home remedies and stigma surrounding the treatment for hearing loss. CONCLUSIONS: Patient-centered health care requires an understanding of context. Explanatory models of illness are context-specific ways in which patients and their networks perceive and describe the experience of an illness or disability. In this study, we documented explanatory models of hearing loss to foster ecological validity and better understand the relevance of research findings to real-life hearing-related experiences. These findings suggest several areas that should be addressed in future implementation of hearing health care interventions elsewhere in rural Alaska, including management of repetitious treatments, awareness of infection-mediated hearing loss, mistrust, and communication breakdowns. For hearing-related health care in this region, these findings suggest localized recommendations for approaches for prevention and treatment. For community-based hearing research, this study offers an example of how qualitative methods can be used to generate ecologically valid (i.e., contextually grounded) findings.
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Surdez , Perda Auditiva Provocada por Ruído , Telemedicina , Humanos , Alaska/epidemiologia , Atenção à Saúde , Perda Auditiva Provocada por Ruído/epidemiologia , Pesquisa QualitativaRESUMO
OBJECTIVES: To understand factors associated with outcomes in a cluster-randomized controlled trial that evaluated a telemedicine specialty referral intervention for school hearing screenings in 15 rural Alaskan communities. DESIGN: Hearing Norton Sound was a mixed methods cluster-randomized controlled trial that compared a telemedicine specialty referral pathway (intervention) to a standard primary care referral pathway (control) for school hearing screenings. As a mixed methods trial, both quantitative and qualitative data were collected, analyzed, and integrated. Main trial results are published elsewhere, but integration of community-specific quantitative outcomes and qualitative results have not yet been reported. The constant comparative method was used to analyze qualitative data from semistructured interviews with six stakeholder groups across all 15 communities. Descriptive statistics were used to describe community-specific proportions of follow-up in both trial years. Qualitative and quantitative results were integrated to reveal relationships between contextual factors and follow-up outcomes across communities. RESULTS: The Hearing Norton Sound trial enrolled 1481 children from October 2017 to March 2019, with a total of 790 children requiring referral. Of the children who referred in the telemedicine specialty referral pathway communities (intervention), 68.5% received follow-up (268/391), compared to 32.1% (128/399) in primary care referral communities (control)(previously reported). When broken down by community, the mean proportion receiving follow-up was 75.26% (SD 22.5) and 37.9% (SD 11.4) for the telemedicine specialty referral communities and primary care referral communities, respectively. For qualitative data collection, semistructured interviews were conducted with 101 individuals between December 2018 and August 2019. Six stakeholder groups participated: elders (n = 14), parents (n = 25), children (n = 11), teachers/school staff (n = 18), principals (n = 6), and healthcare providers/clinic staff (n = 27). Six overall factors related to the outcomes of the telemedicine specialty referral pathway emerged during analysis: clinic capacity, personnel ownership and engagement, scheduling, telemedicine equipment/processes, communication, and awareness of the need for follow-up. We integrated these factors with the community-specific follow-up percentages and found associations for four of the six qualitative factors: clinic capacity, personnel ownership and engagement, communication, and awareness. An association was not seen for scheduling and telemedicine equipment/processes, which had variable relationships with the follow-up outcome. CONCLUSIONS: The Hearing Norton Sound trial demonstrated that a telemedicine specialty referral pathway can close the gap on children lost to follow up after school hearing screening. As a whole, the intervention profoundly increased the proportion of children receiving follow-up, but there was variability in outcomes within and between communities. To understand this variability, we analyzed community-specific intervention outcomes alongside community member feedback on factors related to the intervention. We identified four key factors that contributed to the success of the intervention. Attention to these factors will be essential to successful adaptation and implementation of this telemedicine specialty referral intervention and other similar interventions in future work in rural Alaska and beyond.
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Serviços de Saúde Escolar , Telemedicina , Criança , Humanos , Alaska , Testes Auditivos , Encaminhamento e Consulta , Telemedicina/métodos , População Rural , Acessibilidade aos Serviços de SaúdeRESUMO
OBJECTIVES: Diagnostic accuracy was evaluated for various screening tools, including mobile health (mHealth) pure-tone screening, tympanometry, distortion product otoacoustic emissions (DPOAE), and inclusion of high frequencies to determine the most accurate screening protocol for identifying children with hearing loss in rural Alaska where the prevalence of middle ear disease is high. DESIGN: Hearing screening data were collected as part of two cluster randomized trials conducted in 15 communities in rural northwest Alaska. All children enrolled in school from preschool to 12th grade were eligible. Analysis was limited to data collected 2018 to 2019 (n = 1449), when both trials were running and measurement of high frequencies were included in the protocols. Analyses included estimates of diagnostic accuracy for each screening tool, as well as exploring performance by age and grade. Multiple imputation was used to assess diagnostic accuracy in younger children, where missing data were more prevalent due to requirements for conditioned responses. The audiometric reference standard included otoscopy, tympanometry, and high frequencies to ensure detection of infection-related and noise-induced hearing loss. RESULTS: Both the mHealth pure-tone screen and DPOAE screen performed better when tympanometry was added to the protocol (increase in sensitivity of 19.9%, 95% Confidence Interval (CI): 15.9 to 24.1 for mHealth screen, 17.9%, 95% CI: 14.0 to 21.8 for high-frequency mHealth screen, and 10.4%, 95% CI: 7.5 to 13.9 for DPOAE). The addition of 6 kHz to the mHealth pure-tone screen provided an 8.7 percentage point improvement in sensitivity (95% CI: 6.5 to 11.3). Completeness of data for both the reference standard and the mHealth screening tool differed substantially by age, due to difficulty with behavioral testing in young children. By age 7, children were able to complete behavioral testing, and data indicated that high-frequency mHealth pure-tone screen with tympanometry was the superior tool for children 7 years and older. For children 3 to 6 years of age, DPOAE plus tympanometry performed the best, both for complete data and multiply imputed data, which better approximates accuracy for children with missing data. CONCLUSIONS: This study directly evaluated pure-tone, DPOAE, and tympanometry tools as part of school hearing screening in rural Alaskan children (3 to 18+ years). Results from this study indicate that tympanometry is a key component in the hearing screening protocol, particularly in environments with higher prevalence of infection-related hearing loss. DPOAE is the preferred hearing screening tool when evaluating children younger than 7 years of age (below 2nd grade in the United States) due to the frequency of missing data with behavioral testing in this age group. For children 7 years and older, the addition of high frequencies to pure-tone screening increased the accuracy of screening, likely due to improved identification of hearing loss from noise exposure. The lack of a consistent reference standard in the literature makes comparing across studies challenging. In our study with a reference standard inclusive of otoscopy, tympanometry, and high frequencies, less than ideal sensitivities were found even for the most sensitive screening protocols, suggesting more investigation is necessary to ensure screening programs are appropriately identifying noise- and infection-related hearing loss in rural, low-resource settings.
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Surdez , Perda Auditiva Provocada por Ruído , Criança , Humanos , Pré-Escolar , Alaska , Emissões Otoacústicas Espontâneas/fisiologia , Audiometria de Tons Puros , Ensaios Clínicos Controlados Aleatórios como Assunto , Instituições AcadêmicasRESUMO
OBJECTIVES: Childhood hearing loss has well-known lifelong consequences. Certain rural populations are at higher risk for infection-related hearing loss. For Alaska Native children, historical data on hearing loss prevalence suggest a higher burden of infection-related hearing loss, but updated prevalence data are urgently needed in this high-risk population. DESIGN: Hearing data were collected as part of two school-based cluster-randomized trials in 15 communities in rural northwest Alaska over two academic years (2017-2019). All enrolled children from preschool to 12th grade were eligible. Pure-tone thresholds were obtained using standard audiometry and conditioned play when indicated. The analysis included the first available audiometric assessment for each child (n = 1634 participants, 3 to 21 years), except for the high-frequency analysis, which was limited to year 2 when higher frequencies were collected. Multiple imputation was used to quantify the prevalence of hearing loss in younger children, where missing data were more frequent due to the need for behavioral responses. Hearing loss in either ear was evaluated using both the former World Health Organization (WHO) definition (pure-tone average [PTA] > 25 dB) and the new WHO definition (PTA ≥ 20 dB), which was published after the study. Analyses with the new definition were limited to children 7 years and older due to incomplete data obtained on younger children at lower thresholds. RESULTS: The overall prevalence of hearing loss (PTA > 25 dB; 0.5, 1, 2, 4 kHz) was 10.5% (95% confidence interval [CI], 8.9 to 12.1). Hearing loss was predominately mild (PTA >25 to 40 dB; 8.9%, 95% CI, 7.4 to 10.5). The prevalence of unilateral hearing loss was 7.7% (95% CI, 6.3 to 9.0). Conductive hearing loss (air-bone gap of ≥ 10 dB) was the most common hearing loss type (9.1%, 95% CI, 7.6 to 10.7). Stratified by age, hearing loss (PTA >25 dB) was more common in children 3 to 6 years (14.9%, 95% CI, 11.4 to 18.5) compared to children 7 years and older (8.7%, 95% CI, 7.1 to 10.4). In children 7 years and older, the new WHO definition increased the prevalence of hearing loss to 23.4% (95% CI, 21.0 to 25.8) compared to the former definition (8.7%, 95% CI, 7.1 to 10.4). Middle ear disease prevalence was 17.6% (95% CI, 15.7 to 19.4) and was higher in younger children (23.6%, 95% CI, 19.7 to 27.6) compared to older children (15.2%, 95% CI, 13.2 to 17.3). High-frequency hearing loss (4, 6, 8kHz) was present in 20.5% (95% CI, 18.4 to 22.7 [PTA >25 dB]) of all children and 22.8% (95% CI, 20.3 to 25.3 [PTA >25 dB]) and 29.7% (95% CI, 27.0 to 32.4 [PTA ≥ 20 dB]) of children 7 years and older (limited to year 2). CONCLUSIONS: This analysis represents the first prevalence study on childhood hearing loss in Alaska in over 60 years and is the largest cohort with hearing data ever collected in rural Alaska. Our results highlight that hearing loss continues to be common in rural Alaska Native children, with middle ear disease more prevalent in younger children and high-frequency hearing loss more prevalent with increasing age. Prevention efforts may benefit from managing hearing loss type by age. Lastly, continued research is needed on the impact of the new WHO definition of hearing loss on field studies.
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Surdez , Perda Auditiva de Alta Frequência , Criança , Humanos , Pré-Escolar , Adolescente , Alaska/epidemiologia , Prevalência , População Rural , Audiometria de Tons Puros/métodosRESUMO
OBJECTIVES: Preschool programs provide essential preventive services, such as hearing screening, but in rural regions, limited access to specialists and loss to follow-up compound rural health disparities. We conducted a parallel-arm cluster-randomized controlled trial to evaluate telemedicine specialty referral for preschool hearing screening. The goal of this trial was to improve timely identification and treatment of early childhood infection-related hearing loss, a preventable condition with lifelong implications. We hypothesized that telemedicine specialty referral would improve time to follow-up and the number of children receiving follow-up compared with the standard primary care referral. DESIGN: We conducted a cluster-randomized controlled trial in K-12 schools in 15 communities over two academic years. Community randomization occurred within four strata using location and school size. In the second academic year (2018-2019), an ancillary trial was performed in the 14 communities that had preschools to compare telemedicine specialty referral (intervention) to standard primary care referral (comparison) for preschool hearing screening. Randomization of communities from the main trial was used for this ancillary trial. All children enrolled in preschool were eligible. Masking was not possible because of timing in the second year of the main trial, but referral assignment was not openly disclosed. Study team members and school staff were masked throughout data collection, and statisticians were blinded to allocation during analysis. Preschool screening occurred once, and children who were referred for possible hearing loss or ear disease were monitored for follow-up for 9 months from the screening date. The primary outcome was time to ear/hearing-related follow-up from the date of screening. The secondary outcome was any ear/hearing follow-up from screening to 9 months. Analyses were conducted using an intention-to-treat approach. RESULTS: A total of 153 children were screened between September 2018 and March 2019. Of the 14 communities, 8 were assigned to the telemedicine specialty referral pathway (90 children), and 6 to the standard primary care referral pathway (63 children). Seventy-one children (46.4%) were referred for follow-up: 39 (43.3%) in the telemedicine specialty referral communities and 32 (50.8%) in the standard primary care referral communities. Of children referred, 30 (76.9%) children in telemedicine specialty referral communities and 16 (50.0%) children in standard primary care referral communities received follow-up within 9 months (Risk Ratio = 1.57; 95% confidence interval [CI], 1.22 to 2.01). Among children who received follow-up, median time to follow-up was 28 days (interquartile range [IQR]: 15 to 71) in telemedicine specialty referral communities compared with 85 days (IQR: 26 to 129) in standard primary care referral communities. Mean time to follow-up for all referred children was 4.5 (event time ratio = 4.5; 95% CI, 1.8 to 11.4; p = 0.045) times faster in telemedicine specialty referral communities compared with standard primary care referral communities in the 9-month follow-up time frame. CONCLUSIONS: Telemedicine specialty referral significantly improved follow-up and reduced time to follow-up after preschool hearing screening in rural Alaska. Telemedicine referrals could extend to other preventive school-based services to improve access to specialty care for rural preschool children.
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Surdez , Perda Auditiva , Telemedicina , Humanos , Pré-Escolar , Alaska , Perda Auditiva/diagnóstico , Serviços de Saúde Escolar , Encaminhamento e ConsultaRESUMO
BACKGROUND AND OBJECTIVES: Studies have shown that cultural norms such as filial responsibility and familism operate in the Korean American caregiving context. The purpose of our study is to understand the practice of Korean American caregivers who provide care to a family member living with dementia and their dementia care support needs. MATERIALS AND METHODS: We conducted 2 focus groups and individual semi-structured interviews with a total of 20 Korean American caregivers. We used inductive thematic analysis to guide coding and generation of themes. RESULTS: Three themes were identified; 1) intersectionality in the Korean American caregiver experience, 2) complex family dynamics, and 3) dementia care barriers and caregiver support needs. Within the dyadic relationship and the family, cultural identity, generational, acculturational, and language factors shaped the caregiver experience. The need to navigate bicultural norms could lead to tensions but also provide opportunity for caregivers to consider self-care and use external supports to decrease the work of caregiving. Family was the unit of caregiving and caregiving was divided among family members based on acculturation and language fluency. Caregivers desired both medical information combined with knowledge that experienced lay support could provide. Support that reflects their cultural context was valued. DISCUSSION: Findings suggest the importance of understanding the diversity of response to strong elder care norms among Korean American caregivers and the intersection of multiple factors that influence their caregiving experience. Integrating acculturation and generational assessments may be useful as a way to tailor interventions to optimize engagement in dementia care interventions.
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Cuidadores , Demência , Humanos , Aculturação , Asiático , Grupos FocaisRESUMO
BACKGROUND: Caregiving for persons with heart failure (HF) varies based on the individual, family, and home contexts of the dyad, yet the dyadic context of HF caregiving is poorly understood. OBJECTIVE: The aim of this study was to explore dyadic perspectives on the context of caregiving for persons with HF. METHODS: Family caregivers and persons with HF completed surveys and semistructured interviews. Investigators also photographed caregiving areas to complement home environment data. Descriptive qualitative analysis resulted in 7 contextual domains, and each domain was rated as strength, need, or neutral. We grouped dyads by number of challenging domains of context, categorizing dyads as high (≥3 domains), moderate (1-2 domains), or minimal (0 domains) needs. Quantitative instruments included the 36-item Short Form Health Survey, ENRICHD Social Support, HF Symptom Severity, and Zarit Burden Interview. We applied the average score of each quantitative measure to the groups derived from the qualitative analysis to integrate data in a joint display. RESULTS: The most common strength was the dyadic relationship, and the most challenging domain was caregiving intensity. Every dyad had at least 2 domains of strengths. Of 12 dyads, high-needs dyads (n = 3) had the worst average score for 7 of 10 instruments including caregiver and patient factors. The moderate-needs dyads (n = 6) experienced the lowest caregiver social support and mental health, and the highest burden. CONCLUSION: Strengths and needs were evident in all patient-caregiver dyads with important distinctions in levels of need based on assessment of multiple contextual domains. Comprehensive dyadic and home assessments may improve understanding of unmet needs and improve intervention tailoring.
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AIM: We examined information sharing between direct care workers, family caregivers, and clinicians involved in the care of older adults with disabilities. METHODS: Semi-structured interviews with N = 11 representatives of home care agencies ("residential service agencies" in Maryland). RESULTS: Work system and process characteristics relevant to information sharing included: (1) using electronic management systems and patient portals to communicate within agencies and with clinicians, (2) implementing tools to gather information about client goals, preferences, and routines, and (3) relying on family members for information about clients' needs. Participants did not report differences in dementia-related care coordination; however, dementia-related adaptations involved additional considerations for navigating relationships with family and standardizing processes to communicate with clinicians. CONCLUSION: Findings highlight care demands experienced by direct care workers and support calls to better coordinate information sharing between interdisciplinary care teams.
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Demência , Pessoas com Deficiência , Serviços de Assistência Domiciliar , Humanos , Idoso , Cuidadores , Demência/terapia , Disseminação de InformaçãoRESUMO
The primary goal of depression screening is to reduce adverse psychiatric outcomes, which may have downstream implications for reducing avoidable health services use. The objective of this study was to examine the association of depression screening with emergency health services use and medically-treated suicidal behaviors among adolescents in the U.S. This longitudinal cohort study used insurance claims data from 57,732 adolescents who had at least one well-visit between 2014 and 2017. Propensity score matching was used to compare adolescents who were screened for depression to similar adolescents who were not screened for depression during the well-visit. Outcomes were examined over two-year follow-up and included emergency department use and inpatient hospitalizations for depression-related reasons, mental health-related reasons, and any reason as well as medically-treated suicidal behaviors. Log-binomial regression models were used to examine associations between depression screening and each outcome in the matched sample. Heterogeneity of associations by sex was examined with interaction terms. Being screened for depression was not consistently associated with emergency department use (depression-related reasons: RR = 1.00, 95% CI = 0.76-1.30; mental health-related reasons: RR = 1.02, 95% CI = 0.80-1.29; any reason: RR = 0.96, 95% CI = 0.83-1.11), inpatient hospitalizations (depression-related reasons: RR = 1.05, 95% CI = 0.84-1.31; mental health-related reasons: RR = 1.16, 95% CI = 1.00-1.33; any reason: RR = 1.05, 95% CI = 0.99-1.12), or medically-treated suicidal behaviors (RR = 0.83, 95% CI = 0.51-1.36). Associations were similar in magnitude among male and female adolescents. The results of this study suggest that depression screening, as it is currently practiced in the U.S., may not deter avoidable health services use among adolescents.
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Serviços Médicos de Emergência , Ideação Suicida , Adolescente , Estudos de Coortes , Serviço Hospitalar de Emergência , Feminino , Humanos , Estudos Longitudinais , MasculinoRESUMO
While the supporting role of families and friends has been widely recognized in cancer care, little data exist on how they influence patients' decisions regarding clinical trial participation, accounting for patients' decisional preferences. The goal of our study was to examine the process of clinical trial decision-making from the perspective of adults with cancer and their decision partners. Semi-structured interviews were conducted with 12 patients and 12 decision partners-family and friends engaged in the medical decision-making. Themes included: (1) having the ability and confidence to make decisions; (2) gaining insight about clinical trials; (3) trusting someone in the process; and (4) realizing readiness and context. Our findings will enhance understanding of how patients make clinical trial decisions based on decisional preferences from the perspectives of patients and decision partners. The findings may also help to increase clinician awareness and inclusion of decision partners in conversations regarding clinical trials.
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Tomada de Decisões , Neoplasias , Adulto , Tomada de Decisão Clínica , Ensaios Clínicos como Assunto , Comunicação , Humanos , Neoplasias/terapia , Participação do Paciente , Preferência do Paciente , Pesquisa QualitativaRESUMO
OBJECTIVES: Some observers have proposed that physicians may die differently compared with the average patient. Semi-structured interviews with family members of physicians who died offer an opportunity to better understand how patient preferences and wishes are perceived and acted on by family members at the end of life. The decision-making experiences of these family members for a loved one who was a physician may have implications for the lay person at end of life. METHODS: The Johns Hopkins Precursors Study includes individuals who matriculated into the graduating classes of 1948 to 1964 of the Johns Hopkins University School of Medicine. From this cohort, we interviewed 26 family members of physicians who died. Interviews were coded and analyzed using a comparative, iterative process. RESULTS: We found that family members of physicians who died described the uncertainty at end of life. This overarching theme was organized into the following: (a) the certainty of uncertainty; (b) the preparation for uncertainty; and (c) brokering of decisions in the face of uncertainty. Despite careful end-of-life preparation by well-informed physicians, family members were still left to broker decisions as they navigated the wishes of the physician and what the family and medical care team believed to be in the best interest of the physician. SIGNIFICANCE OF RESULTS: Our findings suggest that our family members were not immune to uncertainty. The clinical momentum at the end of life may contribute to challenges faced by patients and family members when brokering decisions. Normalizing uncertainty in medical training and for families may aid in addressing the stress of uncertainty at end of life.
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BACKGROUND: Depression is common after a diagnosis of prostate cancer and may contribute to poor outcomes, particularly among African Americans. The authors assessed the incidence and management of depression and its impact on overall mortality among African American and White veterans with localized prostate cancer. METHODS: The authors used the Veterans Health Administration Corporate Data Warehouse to identify 40,412 African American and non-Hispanic White men diagnosed with localized prostate cancer from 2001 to 2013. Patients were followed through 2019. Multivariable logistic regression was used to measure associations between race and incident depression, which were ascertained from administrative and depression screening data. Cox proportional hazards models were used to measure associations between incident depression and all-cause mortality, with race-by-depression interactions used to assess disparities. RESULTS: Overall, 10,013 veterans (24.5%) were diagnosed with depression after a diagnosis of prostate cancer. Incident depression was associated with higher all-cause mortality (adjusted hazard ratio [aHR], 1.27; 95% confidence interval [CI], 1.23-1.32). African American veterans were more likely than White veterans to be diagnosed with depression (29.3% vs 23.2%; adjusted odds ratio [aOR], 1.15; 95% CI, 1.09-1.21). Among those with depression, African Americans were less likely to be prescribed an antidepressant (30.4% vs 31.7%; aOR, 0.85; 95% CI, 0.77-0.93). The hazard of all-cause mortality associated with depression was greater for African American veterans than White veterans (aHR, 1.32 [95% CI, 1.26-1.38] vs 1.15 [95% CI, 1.07-1.24]; race-by-depression interaction P < .001). CONCLUSIONS: Incident depression is common among prostate cancer survivors and is associated with higher mortality, particularly among African American men. Patient-centered strategies to manage incident depression may be critical to reducing disparities in prostate cancer outcomes.
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Sobreviventes de Câncer , Depressão , Mortalidade , Neoplasias da Próstata , Negro ou Afro-Americano/psicologia , Negro ou Afro-Americano/estatística & dados numéricos , Sobreviventes de Câncer/psicologia , Sobreviventes de Câncer/estatística & dados numéricos , Depressão/etnologia , Humanos , Incidência , Masculino , Mortalidade/etnologia , Neoplasias da Próstata/etnologia , Neoplasias da Próstata/psicologia , População Branca/psicologia , População Branca/estatística & dados numéricosRESUMO
BACKGROUND: To describe the ethical issues and experiences of scientists conducting mixed methods health services research and to advance empirical and conceptual discussion on ethical integrity in mixed methods health research. METHODS: The study was conducted with 64 scholars, faculty and consultants from the NIH-funded Mixed Methods Research Training Program (MMRTP) for the Health Sciences. This was a cross-sectional study. Survey results were analyzed using descriptive statistics to characterize responses and open coding to summarize strategies about eight ethical mixed methods research issues. Respondents completed an online survey to elicit experiences related to eight ethical issues (informed consent, confidentiality, data management, burden, safety, equitable recruitment, communication, and dissemination) and strategies for addressing them. RESULTS: Only about one-third of respondents thought their research ethics training helped them plan, conduct, or report mixed methods research. The most frequently occurring ethical issues were participant burden, dissemination and equitable recruitment (> 70% endorsement). Despite occurring frequently, < 50% of respondents rated each ethical issue as challenging. The most challenging ethical issues were related to managing participant burden, communication, and dissemination. Strategies reported to address ethical issues were largely not specific or unique to mixed methods with the exception of strategies to mitigate participant burden and, to a lesser degree, to facilitate equitable recruitment and promote dissemination of project results. CONCLUSIONS: Mixed methods health researchers reported encountering ethical issues often yet varying levels of difficulty and effectiveness in the strategies used to mitigate ethical issues. This study highlights some of the unique challenges faced by mixed methods researchers to plan for and appropriately respond to arising ethical issues such as managing participant burden and confidentiality across data sources and utilizing effective communication and dissemination strategies particularly when working with a multidisciplinary research team. As one of the first empirical studies to examine mixed methods research ethics, our findings highlight the need for greater attention to ethics in health services mixed methods research and training.
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Confidencialidade , Ética em Pesquisa , Estudos Transversais , Pesquisa sobre Serviços de Saúde , Humanos , Consentimento Livre e EsclarecidoRESUMO
Young melanoma survivors and their family are at increased risk for developing melanoma, but seldom engage in sun protection behaviors. Little is known about the role of family factors in sun protection. Our goals were: 1) examine correspondence between survivors and family sun protection, individual attitudes, and family attitudes and communication about risk-reducing behaviors, and; 2) evaluate the mediating role of family attitudes and communication in the association between individual sun protection attitudes and behavior. Measures of individual attitudes, family attitudes and communication, and sun protection behaviors were completed by 529 participants. Multilevel modeling assessed family correspondence in sun-related attitudes and behaviors and mediation. Families had varying levels of shared attitudes and behaviors, with higher correspondence for family norms. Survivors reported stronger family norms, greater family benefits, and more discussion than siblings. For both sexes, family discussion was associated with higher sun protection. For women only, more favorable attitudes were associated with sun protection partly because women discussed sun protection with family and held stronger norms. Because families' attitudes and practices correspond, family-focused interventions may prove effective. Among females, increasing risk awareness and sunscreen efficacy and overcoming barriers may foster enhanced normative standards, communication about, and engagement in sun protection.
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Sobreviventes de Câncer , Melanoma , Neoplasias Cutâneas , Queimadura Solar , Comunicação , Família , Feminino , Comportamentos Relacionados com a Saúde , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Masculino , Neoplasias Cutâneas/prevenção & controle , Queimadura Solar/prevenção & controle , Protetores Solares/uso terapêutico , Sobreviventes , Adulto JovemRESUMO
INTRODUCTION: In warm conditions topical application of menthol increases cool sensations and influences deep body temperature. The purpose of this experiment was to explore whether different body surface areas (BSA) exposed to menthol influence these responses. It was hypothesized that the forcing function exerted by menthol will be proportionally related to BSA. METHOD: Using a within-participant design, 13 participants underwent three BSA exposures (Small [S; finger]; Medium [M; arm]; Large [L; upper/lower body]) to 4.13% menthol, and one Placebo exposure. During each exposure participants rested supine in a tent (30 °C, 50%rh) for 30-min before their intervention and 30-min thereafter. Measures included thermal sensation, thermal comfort, irritation, skin blood flow (finger SkBF; laser Doppler flowmetry), rectal temperature (Tre), and skin temperature (chest, forearm, thigh, calf). The Area Under the Curve from minute 30 to 60 was calculated and analyzed using a one-way ANOVA or Friedman's test with post-hoc testing (0.05 alpha level). RESULTS: There was no significant difference in any measure of thermometry (p > 0.05), while SKBF was significantly lowered in L, M, and S vs. P respectively (p < 0.05). Participants in L felt cooler vs. P and S (p < 0.05). Losses in thermal comfort were noted in L and M vs. P and S (p < 0.05), along with increased irritation in L vs. S (p < 0.05). CONCLUSIONS: Despite similar skin temperatures, larger BSA's exposed to menthol caused cooler sensations, likely due to the activation of a larger pool of menthol-sensitive neurons. This occurred in the absence of thermal discomfort and without perceptions of irritation exceeding 'weak'. Larger BSA's also exhibited greater alterations in Tre, likely driven by a reduction in SkBF, but despite this mean body temperature was regulated suggesting the thermoregulatory system can cope with the range of BSA exposures studied herein.
Assuntos
Regulação da Temperatura Corporal , Mentol/administração & dosagem , Sensação Térmica , Adulto , Superfície Corporal , Humanos , Masculino , Temperatura Cutânea , Adulto JovemRESUMO
African immigrant (AI) women have low rates of Pap testing. Health literacy plays a pivotal role in health behaviors. Sources and types of health information could shape health literacy and inform the Pap testing behaviors of AI women. However, the influences of health literacy, sources, and types of health information along with cultural and psychosocial correlates on the Pap testing behaviors of AI women are poorly understood. To examine how sources and types of health information impact health literacy, and in turn, how health literacy and cultural and psychosocial factors influence the Pap testing behaviors of AI women. An adapted Health Literacy Skills Framework guided the selection of variables for this cross-sectional study. Convenience sampling was used to recruit 167 AI women, 21-65 years. Multivariate logistic regression was used to assess correlates of Pap testing after adjusting for covariates (age, education, English proficiency, employment, income, health insurance, access to primary care, marital status, and healthcare provider recommendation). Most participants (71%) had received a Pap test in the past and used multiple (two or more) sources (65%) and types (57%) of health information. Using multiple sources of health information (aOR 0.11, p < 0.01) but not types of health information was associated with Pap testing. Having negative cultural beliefs (aOR 0.17, p = 0.01) and having high self-efficacy (aOR 9.38, p < 0.01) were significantly associated with Pap testing after adjusting for covariates. High health literacy (OR 3.23, p < 0.05) and high decisional balance (OR 5.28, p < 0.001) were associated with Pap testing in bivariate models but did not remain significant after controlling for covariates. Cultural beliefs was a significant correlate of AI women's Pap testing behaviors regardless of other known social determinants of health (education, English proficiency, age, access to primary care). Disseminating health information through various sources has the potential to promote Pap testing among AI women. Larger studies which utilize a robust sampling strategy and include a diverse group of AI women are needed in order to optimize health interventions aimed at improving Pap test screening behaviors among AI women.
Assuntos
Emigrantes e Imigrantes , Letramento em Saúde , Neoplasias do Colo do Útero , Estudos Transversais , Detecção Precoce de Câncer , Feminino , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Teste de Papanicolaou , Neoplasias do Colo do Útero/diagnóstico , Esfregaço VaginalRESUMO
OBJECTIVES: Osteoarthritis (OA) disease progression may lead to deteriorating psychosocial function, but it is unclear what aspects of disease severity are related to the onset of depression. This study assessed which components of OA disease progression cumulatively contribute to depression onset in persons with radiographic knee OA. METHODS: Osteoarthritis Initiative participants (n = 1651) with radiographic disease (Kellgren-Lawrence grade ≥2) in one or both knees and below the screening threshold for probable depression [Center for Epidemiological Studies Depression (CES-D) scale <16] at baseline were included. Disease severity was measured from baseline to the third annual follow-up visit using joint space width, 20-meter gait speed, and the Western Ontario and McMaster Universities Osteoarthritis Index pain subscale, each categorized into quintiles. Depression onset (CES-D ≥ 16) was assessed annually at four follow-up visits. Marginal structural models that account for time-dependent confounding and attrition evaluated the association between each time-varying disease severity measure and depression onset. RESULTS: Each disease severity measure exhibited a non-linear relationship concerning the probability of depression onset, with the higher quintiles generally being associated with a larger risk. The highest quintile (relative to the lowest) of joint space width and gait speed were both significantly associated with depression onset. By contrast, none of the higher pain quintiles compared with the lowest were significantly associated with the onset of depression. CONCLUSION: Faster disease progression as measured by either worsening structural severity or decreasing physical performance corresponds to an increased risk of depression among individuals with radiographic knee OA.
Assuntos
Depressão/etiologia , Progressão da Doença , Osteoartrite do Joelho/diagnóstico por imagem , Osteoartrite do Joelho/psicologia , Idoso , Fatores de Confusão Epidemiológicos , Depressão/diagnóstico , Depressão/epidemiologia , Feminino , Seguimentos , Humanos , Articulação do Joelho/diagnóstico por imagem , Masculino , Pessoa de Meia-Idade , Medição da Dor/métodos , Desempenho Físico Funcional , Qualidade de Vida , Índice de Gravidade de Doença , Fatores de Tempo , Velocidade de CaminhadaRESUMO
Gillis, DJ, Vellante, A, Gallo, JA, and D'Amico, AP. Influence of menthol on recovery from exercise-induced muscle damage. J Strength Cond Res 34(2): 451-462, 2020-This study assessed the influence of menthol, a cold receptor agonist, on recovery from exercise-induced muscle damage (EIMD). Forty-seven healthy males were allocated to a Control (CON, n = 18), Placebo (P, n = 14), or 4.0% Menthol (M, n = 15) condition. Participants were familiarized with a testing battery (TB) including: perception of lower-body muscle soreness, hip flexion/abduction range of motion, vertical jump (VJ), and the agility T-test. Muscle damage was induced on day 1 using 40 × 15-m sprints with a 5-m deceleration zone. The TB immediately followed this and was repeated once-daily for 5 days. Over this time, participants in M and P applied gels to the lower body immediately after sprinting and twice-daily thereafter, whereas CON did nothing. Dependent variables were compared by condition using the Kruskal-Wallis test (α = 0.05), and mean differences with 90% confidence intervals were calculated with small, moderate, and large effects. A significant difference by condition (p < 0.05) in muscle soreness was found, and moderate to large effects were observed in the reduction of muscle soreness with P, compared with M or CON, indicating a placebo effect. A reduction in VJ height across all conditions was observed, with a significant effect (p < 0.05) by condition, and moderate to large effects (1-5 cm) were observed in its preservation with menthol, compared with P or CON. No other differences were observed. These findings raise the possibility that menthol influences recovery of lower-body power after EIMD, and this may have practical implications for menthol's use when recovery of muscle power is important.