14 research outputs found

    "Captive by the Uncertainty"-Experiences with Anticipatory Guidance for People Living with Dementia and Their Caregivers at a Specialty Dementia Clinic.

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    BackgroundAfter a diagnosis of Alzheimer's disease and related disorders, people living with dementia (PWD) and caregivers wonder what disease trajectory to expect and how to plan for functional and cognitive decline. This qualitative study aimed to identify patient and caregiver experiences receiving anticipatory guidance about dementia from a specialty dementia clinic.ObjectiveTo examine PWD and caregiver perspectives on receiving anticipatory guidance from a specialty dementia clinic.MethodsWe conducted semi-structured interviews with PWD, and active and bereaved family caregivers, recruited from a specialty dementia clinic. Interviews were recorded, transcribed, and systematically summarized. Thematic analysis identified anticipatory guidance received from clinical or non-clinical sources and areas where respondents wanted additional guidance.ResultsOf 40 participants, 9 were PWD, 16 were active caregivers, and 15 were bereaved caregivers. PWD had a mean age of 75 and were primarily male (n = 6/9); caregivers had a mean age of 67 and were primarily female (n = 21/31). Participants felt they received incomplete or "hesitant" guidance on prognosis and expected disease course via their clinicians and filled the gap with information they found via the internet, books, and support groups. They appreciated guidance on behavioral, safety, and communication issues from clinicians, but found more timely and advance guidance from other non-clinical sources. Guidance on legal and financial planning was primarily identified through non-clinical sources.ConclusionPWD and caregivers want more information about expected disease course, prognosis, and help planning after diagnosis. Clinicians have an opportunity to improve anticipatory guidance communication and subsequent care provision

    The incidence of Trichomonas vaginalis

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    OBJECTIVES: Trichomoniasis (TV) is associated with an increased risk of acquisition of sexually transmitted diseases (STDs) and HIV. The purpose of this study is to evaluate factors associated with incidence TV among female STD clinic attendees in the USA. METHODS: Data were collected from women participating in a randomised controlled trial evaluating brief risk reduction counselling at the time of HIV testing to reduce sexually transmitted infections (STIs) incidence in STD clinics. Participants recruited from STD clinics underwent STI testing at baseline and 6-month follow-up. TV testing was performed using Nucleic Acid Amplification Test. RESULTS: 1704 participants completed study assessments. Prevalence of TV was 14.6%, chlamydia 8.6%, gonorrhoea 3.0%, herpes simplex virus 2 44.7% and HIV 0.4%. Cumulative 6-month incidence of TV was 7.5%. Almost 50% of the incident TV cases had TV at baseline and had received treatment. Factors associated with incidence of TV were having chlamydia, TV and HIV at baseline: TV relative risk (RR)=3.37 (95% CI 2.35 to 4.83, p<0.001); chlamydia RR=1.92 (95% CI 1.23 to 2.99, p=0.04); and HIV=1.59 (95% CI 1.01 to 2.50, p=0.047). CONCLUSIONS: Prevalent and incident TV is common among STD clinic attendees; and baseline TV is the main risk factor for incident TV, suggesting high rates of reinfection or treatment failures. This supports the importance of rescreening women after treatment for TV, evaluating current treatment regimens and programmes to ensure treatment of sexual partners. CLINICAL TRIAL NUMBER: NCT01154296

    Working together to shape the endometrial cancer research agenda:The top ten unanswered research questions

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    AbstractBackgroundEndometrial cancer (EC) is the most common gynaecological cancer in developed nations and its incidence is rising. As a direct consequence, more women are dying from EC despite advances in care and improved survivorship. There is a lack of research activity and funding, as well as public awareness about EC. We sought to engage patients, carers and healthcare professionals to identify the most important unanswered research questions in EC.MethodologyThe priority setting methodology was developed by the James Lind Alliance and involved four key stages: gathering research questions; checking these against existing evidence; interim prioritisation; and a final consensus meeting during which the top ten unanswered research questions were agreed using modified nominal group methodology.ResultsOur first online survey yielded 786 individual submissions from 413 respondents, of whom 211 were EC survivors or carers, and from which 202 unique unanswered research questions were generated. 253 individuals, including 108 EC survivors and carers, completed an online interim prioritisation survey. The resulting top 30 questions were ranked in a final consensus meeting. Our top ten spanned the breadth of patient experience of this disease and included developing personalised risk scoring, refining criteria for specialist referral, understanding the underlying biology of different types of EC, developing novel personalised treatment and prevention strategies, prognostic and predictive biomarkers, increasing public awareness and interventions for psychological issues.ConclusionHaving established the top ten unanswered research questions in EC, we hope this galvanises researchers, healthcare professionals and the public to collaborate, coordinate and invest in research to improve the lives of women affected by EC

    “The Gender and Geography of Citizenship in Mexico-U.S. Transnational Spaces”

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    This paper proposes an approach for analyzing the gender and geography of citizenship practices in transnational social spaces in order to contribute to theorizing on state-transmigrant relations and citizenship. Drawing on feminist scholarship on citizenship I conceptualize citizenship as including formal rights and substantive citizenship practices that are exercised in relation to different levels of political authority, and in different geographic sites within transnational spaces. The approach is used to examine dynamics between Mexican state policies and programs and transmigrant organizations in Los Angeles. Using data from research on migration between Zacatecas and California, I argue that men find a privileged arena of action in transmigrant organizations and Mexican state-mediated transnational social spaces, which become spaces for practicing forms of citizenship that enhance their social and gender status. Women are excluded from active citizenship in this arena, but often practice substantive social citizenship in the United States
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