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Living invisible: HTLV-1-infected persons and the lack of care in public health.

ABSTRACT: INTRODUCTION: Human T-cell lymphotropic virus type 1 (HTLV-1) infection is intractable and endemic in many countries. Although a few individuals have severe symptoms, most patients remain asymptomatic throughout their lives and their infections may be unknown to many health professionals. HTLV-1 can be considered a neglected public health problem and there are not many studies specifically on patients' needs and emotional experiences. OBJECTIVE: To better understand how women and men living with HTLV-1 experience the disease and what issues exist in their healthcare processes. METHODS: A qualitative study using participant observation and life story interview methods was conducted with 13 symptomatic and asymptomatic patients, at the outpatient clinic of the Emilio Ribas Infectious Diseases Institute, in Sao Paulo, Brazil. RESULTS AND DISCUSSION: The interviewees stated that HTLV-1 is a largely unknown infection to society and health professionals. Counseling is rare, but when it occurs, focuses on the low probability of developing HTLV-1 related diseases without adequately addressing the risk of infection transmission or reproductive decisions. The diagnosis of HTLV-1 can remain a stigmatized secret as patients deny their situations. As a consequence, the disease remains invisible and there are potentially negative implications for patient self-care and the identification of infected relatives. This perception seems to be shared by some health professionals who do not appear to understand the importance of preventing new infections. CONCLUSIONS: Patients and medical staff referred that the main focus was the illness risk, but not the identification of infected relatives to prevent new infections. This biomedical model of care makes prevention difficult, contributes to the lack of care in public health for HTLV-1, and further perpetuates the infection among populations. Thus, HTLV-1 patients experience an "invisibility" of their complex demands and feel that their rights as citizens are ignored.

SUBMITTER: Zihlmann KF

PROVIDER: S-EPMC3373594 | biostudies-other | 2012

REPOSITORIES: biostudies-other

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Project description:IntroductionAccelerating rates of dementia worldwide coupled with older adults living longer in the community calls for greater focus on quality home care support services. Few frameworks for quality dementia home care exist though prior findings have found elements considered to be important for "good" home care for people living with dementia. This study aimed to identify core components of a quality home care experience for people with dementia and their caregivers.MethodsAs part of a larger research study, in-depth interviews were conducted with persons living with dementia and caregivers (n = 25) to explore hospital-to-home care transitions. The design used for this study was a qualitative description. We used deductive-inductive thematic analysis, which was informed by previous work in this area. Open codes were mapped to pre-determined themes, and for codes not accommodated by an a piori framework, new themes were developed.FindingsOur findings resulted in 4 overarching themes. Two themes were identified deductively (Availability and Acceptability of Home Care Services) and two inductively (Adaptability and Affordability of Home Care Services). Findings highlight the roles of family-care provider partnerships and responsive support in receiving quality home care, and the cost associated with unmet needs.InterpretationWith an aging population, an increase in home care client acuity, and post-COVID-19 concerns over long-term care, more attention is needed to improve the quality of home care. The demand for these services will continue to increase particularly for those living with dementia and their families. The findings of availability, acceptability, adaptability, and affordability as core to quality care can help lay the groundwork for a home care framework for persons living with dementia and their caregivers. Future research could benefit from comparative analyses to evaluate the applicability of the findings to non-dementia home care service users and caregivers.

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Living invisible: HTLV-1-infected persons and the lack of care in public health.

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