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1.
J Appl Gerontol ; 41(1): 113-123, 2022 01.
Article in English | MEDLINE | ID: mdl-33834890

ABSTRACT

Community resource referral systems have been implemented into care settings that serve persons with dementia but with little input from caregivers. Focus groups were conducted with African American, Hispanic, and Asian caregivers to describe their preferences for community resource referral information. Caregivers discussed the significance of a community resource list for dementia caregiving and self-care and articulated strategies for effective information delivery during a medical visit. Most caregivers acknowledged that resource needs change with progression of dementia, but no patterns emerged with regard to preference for information delivered incrementally based on disease stage or all at once. Hispanic and Asian caregivers felt that resource information should specify service providers' language and cultural capabilities. All caregivers agreed that delivery by a member of the care team with knowledge of dementia-specific resources would be most effective. Optimal delivery of community resource referrals is caregiver-centered and customizable to individual and subgroup preferences.


Subject(s)
Caregivers , Dementia , Community Resources , Dementia/therapy , Focus Groups , Humans , Referral and Consultation
2.
BMC Geriatr ; 19(1): 311, 2019 11 14.
Article in English | MEDLINE | ID: mdl-31727000

ABSTRACT

BACKGROUND: African American caregivers of community-residing persons with dementia are mostly unpaid and have high rates of unmet basic and health needs. The National Alzheimer's Project Act (NAPA) mandates improved coordination of care for persons with dementia and calls for special attention to racial populations at higher risk for Alzheimer's Disease or related dementias (ADRD) to decrease health disparities. The purpose of this study is to describe the perceptions of African American caregivers of people with dementia about community resources needed to support caregiving as well as their own self-care. METHODS: Using a qualitative study design, in-depth, semi-structured qualitative interviews were conducted with caregivers (N = 13) at an urban geriatric clinic to elicit community resource needs, barriers to and facilitators of resource use and how to optimize clinical referrals to community resources. Caregivers were shown a community resource referral list ("HealtheRx") developed for people with dementia and were queried to elicit relevance, gaps and insights to inform delivery of this information in the healthcare setting. Data were iteratively coded and analyzed using directed content analysis. Results represent key themes. RESULTS: Most caregivers were women (n = 10, 77%) and offspring (n = 8, 62%) of the person with dementia. Community resource needs of these caregivers included social, entertainment, personal self-care and hospice services. Main barriers to resource use were the inability to leave the person with dementia unsupervised and the care recipient's disinterest in participating in their own self-care. Facilitators of resource use included shared caregiving responsibility and learning about resources from trusted sources. To optimize clinical referrals to resources, caregivers wanted specific eligibility criteria and an indicator of dementia care capability. CONCLUSIONS: African American caregivers in this study identified ways in which community resource referrals by clinicians can be improved to meet their caregiving and self-care needs.


Subject(s)
Black or African American/psychology , Caregivers/psychology , Dementia/psychology , Health Resources , Qualitative Research , Urban Population , Adult , Aged , Aged, 80 and over , Caregivers/standards , Dementia/therapy , Female , Health Resources/standards , Humans , Male , Middle Aged , Referral and Consultation/standards , Self Care
4.
Med Anthropol ; 38(6): 537-550, 2019.
Article in English | MEDLINE | ID: mdl-31295010

ABSTRACT

Drawing on archival evidence, I document the emergence and florescence of three free health clinics in Chicago in the late 1960s. I trace the centers' forceful removal by the city's Board of Health, and their subsequent replacement by Federally Qualified Health Centers (FHQCs). I argue that the demise of the free centers is exemplary of a broader trend in US health policy of regulating and diminishing the health care options of poor Americans. By highlighting the stark contrast between Chicago's free health centers of the 1960s and the health care services offered by contemporary FQHCs, I reveal a gradual shift from health care rights to accessing care in the US health care safety net.


Subject(s)
Ambulatory Care Facilities/history , Community Health Centers/history , Health Services Accessibility/history , Black or African American/history , Anthropology, Medical , Chicago , History, 20th Century , Humans , Racism/history
5.
Saúde Soc ; 27(3): 740-753, jul.-set. 2018. tab
Article in English | LILACS | ID: biblio-979199

ABSTRACT

Abstract The aim of this study was to describe the challenges and opportunities faced by local health council presidents in their practice of participatory governance. In-depth interviews were conducted with six presidents at health posts at six neighborhoods located in a single region in a peripheral neighborhood in Fortaleza. The interviews were complemented by participant observation of local health council meetings conducted over a three-year period (2015-2017), and interviews with presidents of the municipal, regional and state health councils, as well as with more than twenty actors from government agencies and local associations. The data were analyzed with the help of Atlas.ti, and resulted in the identification of four core topics: the weakness of community representation, the generation of new health initiatives, the concern with the physical and material infrastructure of the councils, and the linkages between council Presidents and the historical network of community-based organizations (Associações Voluntárias) in the region in which the health posts were situated. The local health councils included in this study faced similar challenges to those documented by prior scholars, but also demonstrated the potential to cultivate local ideas for new health initiatives.


Resumo O objetivo deste estudo foi descrever os desafios e oportunidades enfrentadas pelos presidentes de conselhos de saúde locais em executar governança participativa. Foram realizadas entrevistas a fundo com seis presidentes de postos de saúde em seis bairros localizados em uma única região em um bairro da periferia de Fortaleza. As entrevistas foram complementadas por observação participante de reuniões de cada conselho de saúde local, realizado durante um período de três anos (2015-2017), e entrevistas com os presidentes dos conselhos de saúde municipais, regionais e estaduais, bem como com mais de vinte atores de agências governamentais e associações locais. Os dados foram analisados usando o Atlas.ti, resultando na identificação de quatro temas principais: a fragilidade de representação da comunidade, a criação de novas iniciativas de saúde, a preocupação com a infra-estrutura física e material dos conselhos, e os vínculos entre presidentes de conselho e a histórica rede de organizações de base comunitária (Associações Voluntárias) na região em que os postos de saúde se localizavam. Os conselhos de saúde locais incluídos neste estudo enfrentaram desafios semelhantes àqueles documentadas pelos estudiosos anteriores, mas também demonstraram potencial para cultivar ideias locais para novas iniciativas de saúde.


Subject(s)
Humans , Male , Female , Community Participation , Voluntary Agencies , Health Councils
6.
Health Aff (Millwood) ; 35(11): 2020-2029, 2016 11 01.
Article in English | MEDLINE | ID: mdl-27834242

ABSTRACT

The CommunityRx system, a population health innovation, combined an e-prescribing model and community engagement to strengthen links between clinics and community resources for basic, wellness, and disease self-management needs in Chicago. The components of CommunityRx were a youth workforce, whose members identified 19,589 public-serving entities in the 106-square-mile implementation region between 2012 and 2014; community health information specialists, who used the workforce's findings to generate an inventory of 14,914 health-promoting resources; and a health information technology (IT) platform that was integrated with three electronic health record systems at thirty-three clinical sites. By mapping thirty-seven prevalent social and medical conditions to community resources, CommunityRx generated 253,479 personalized HealtheRx prescriptions for more than 113,000 participants. Eighty-three percent of the recipients found the HealtheRx very useful, and 19 percent went to a place they learned about from the HealtheRx. All but one organization continued using the CommunityRx system after the study period ended. This study demonstrates the feasibility of using health IT and workforce innovation to bridge the gap between clinical and other health-promoting sectors.


Subject(s)
Community Health Centers/organization & administration , Electronic Prescribing , Health Promotion/methods , Population Health , Chicago , Humans , Medical Informatics/methods
7.
AIDS Care ; 24(4): 491-5, 2012.
Article in English | MEDLINE | ID: mdl-22150016

ABSTRACT

Drawing on in-depth interviews with a group of urban poor HIV-positive mothers in Northeastern Brazil, this essay examines their experiences with HIV medical diagnosis and treatment. It argues that strong social and religious networks as well as the Universal HIV treatment program provide Northeastern Brazilian mothers with forms of support that may be absent in other countries. It further suggests that more research be done to determine how particular forms of health care, such as the human rights-based approach that Brazil has taken to HIV/AIDS, inform patient-provider relationships.


Subject(s)
HIV Infections , Health Services Accessibility/organization & administration , Infectious Disease Transmission, Vertical/prevention & control , Maternal Welfare , Mothers/psychology , Adult , Brazil/epidemiology , Depression/etiology , Female , HIV Infections/diagnosis , HIV Infections/epidemiology , HIV Infections/psychology , HIV Infections/therapy , HIV Infections/transmission , Human Rights , Humans , Infectious Disease Transmission, Vertical/statistics & numerical data , Maternal Behavior , Maternal Welfare/psychology , Maternal Welfare/statistics & numerical data , Medication Adherence/psychology , Medication Adherence/statistics & numerical data , Poverty Areas , Social Support
8.
J Womens Health (Larchmt) ; 15(6): 747-53, 2006.
Article in English | MEDLINE | ID: mdl-16910906

ABSTRACT

OBJECTIVES: To examine the effects of race and marriage on the sexual attitudes, behavior, and patient-physician communication about sexuality and HIV/AIDS among older women. METHODS: This was a cross-sectional survey of 55 community-residing women aged 58-93. RESULTS: 57% of respondents had engaged in sexual activity since the 60th birthday. Nearly 60% of single women who had been sexually active in the previous 10 years reported that they had not used a condom; 21% of women with a current sexual partner agreed that condom use is not necessary "if you can no longer get pregnant." African American women were significantly more likely to report making changes in their sexual behavior due to HIV (53% vs. 19% white, p = 0.02). Married and African American women were more likely to discuss sex with a physician (80% vs. 47%; p = 0.03 and 75% vs. 46%, p = 0.05, respectively). African Americans were more likely to have had a physician initiate such a discussion (69% vs. 38%, p = 0.04). CONCLUSIONS: Older women in this sample were sexually active, engaged in potentially risky sexual behavior, and believed that physicians should address issues of sexuality. Older African American women were significantly more likely than white women to report HIV-related changes in their behavior and to discuss sex with a physician. This community-based study corroborates clinical research and suggests both a gap and a disparity in older women's dialogue with physicians. It also indicates the need for more broadly generalizable data on issues pertinent to older women's sexual health.


Subject(s)
Black or African American/statistics & numerical data , HIV Infections/prevention & control , Health Knowledge, Attitudes, Practice , Professional-Patient Relations , Sexual Behavior/ethnology , White People/statistics & numerical data , Women's Health/ethnology , Aged , Aged, 80 and over , Cross-Sectional Studies , Female , HIV Infections/ethnology , Humans , Middle Aged , Sexual Behavior/psychology , Sexual Partners/psychology , Surveys and Questionnaires , United States/epidemiology , Urban Population/statistics & numerical data , Women's Health Services/organization & administration
9.
Soc Sci Med ; 62(1): 59-69, 2006 Jan.
Article in English | MEDLINE | ID: mdl-15992982

ABSTRACT

Tactics aimed at reducing perinatal transmission of HIV are proving ineffective at accomplishing complete eradication: a group of women with HIV remain at very high risk for transmitting the virus to their newborns. This study engaged a uniquely high-risk group of HIV-infected mothers as expert informants on childbearing with HIV to inform strategies to eradicate perinatal HIV transmission. The sample draws from an Illinois Department of Children and Family Services (DCFS) database of 1104 HIV-seropositive women with children in protective services between 1989 and 2001. Of these, 32 women knew their HIV-positive status and gave birth to at least two children after 1997 (zidovudine widely implemented as standard of care). Twelve were accessible and consented to participate. Three others, currently pregnant, also participated. Fifteen interviews were completed. The 15 women had given birth to 78 children (9 HIV-infected), fathered by 62 men. Respondents were severely socioeconomically marginalized. They were aware of their HIV status and the benefits of prophylaxis, most desired healthy babies to parent, and most delivered their babies in hospitals equipped to provide adequate prophylaxis. Yet most received inadequate or no prenatal care and did not disclose their HIV status at delivery. Women indicated that denial and substance use were the primary intrinsic barriers and disrespectful treatment was the primary extrinsic barrier to disclosure and care. Women's recommendations about eradication of perinatal HIV transmission emphasized the problem of substance use, the need for private and thorough communication with medical and DCFS personnel, and the need for positive social relationships to enable HIV positive mothers to engage in care. Attention to potent social and institutional barriers that impair the ability of the most marginalized women to disclose their HIV status and accept care is essential to realize eradication of perinatal transmission.


Subject(s)
Anti-HIV Agents/therapeutic use , HIV Infections/drug therapy , HIV Seroprevalence/trends , Infectious Disease Transmission, Vertical/prevention & control , Pregnancy Complications, Infectious/drug therapy , Vulnerable Populations/psychology , Zidovudine/therapeutic use , Adult , Communication , Female , HIV Infections/ethnology , Humans , Illinois/epidemiology , Infant, Newborn , Interviews as Topic , Physician-Patient Relations , Pregnancy , Pregnancy Complications, Infectious/ethnology , Pregnancy, High-Risk , Self Disclosure , Vulnerable Populations/ethnology
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