Establishing a regional, multisite database for quality improvement and service planning in community-based palliative care and hospice.

BACKGROUND: Outpatient palliative care, an evolving delivery model, seeks to improve continuity of care across settings and to increase access to services in hospice and palliative medicine (HPM). It can provide a critical bridge between inpatient palliative care and hospice, filling the gap in community-based supportive care for patients with advanced life-limiting illness. Low capacities for data collection and quantitative research in HPM have impeded assessment of the impact of outpatient palliative care. APPROACH: In North Carolina, a regional database for community-based palliative care has been created through a unique partnership between a HPM organization and academic medical center. This database flexibly uses information technology to collect patient data, entered at the point of care (e.g., home, inpatient hospice, assisted living facility, nursing home). HPM physicians and nurse practitioners collect data; data are transferred to an academic site that assists with analyses and data management. Reports to community-based sites, based on data they provide, create a better understanding of local care quality. CURRENT STATUS: The data system was developed and implemented over a 2-year period, starting with one community-based HPM site and expanding to four. Data collection methods were collaboratively created and refined. The database continues to grow. Analyses presented herein examine data from one site and encompass 2572 visits from 970 new patients, characterizing the population, symptom profiles, and change in symptoms after intervention. CONCLUSION: A collaborative regional approach to HPM data can support evaluation and improvement of palliative care quality at the local, aggregated, and statewide levels.

Prevalence and predictors of HIV-related stigma among institutional- and community-based caregivers of orphans and vulnerable children living in five less-wealthy countries.

BACKGROUND: In the face of the HIV/AIDS epidemic that has contributed to the dramatic increase in orphans and abandoned children (OAC) worldwide, caregiver attitudes about HIV, and HIV-related stigma, are two attributes that may affect caregiving. Little research has considered the relationship between caregiver attributes and caregiver-reported HIV-related stigma. In light of the paucity of this literature, this paper will describe HIV-related stigma among caregivers of OAC in five less wealthy nations. METHODS: Baseline data were collected between May 2006 through February 2008. The sample included 1,480 community-based and 192 institution-based caregivers. Characteristics of the community-based and institution-based caregivers are described using means and standard deviations for continuous variables or counts and percentages for categorical variables. We fit logistic regression models, both for the full sample and separately for community-based and institution-based caregivers, to explore predictors of acceptance of HIV. RESULTS: Approximately 80% of both community-based and institution-based caregivers were female; and 84% of institution-based caregivers, compared to 66% of community-based caregivers, said that they would be willing to care for a relative with HIV. Similar proportions were reported when caregivers were asked if they were willing to let their child play with an HIV-infected child. In a multivariable model predicting willingness to care for an HIV-infected relative, adjusted for site fixed effects, being an institution-based caregiver was associated with greater willingness (less stigma) than community-based caregivers. Decreased willingness was reported by older respondents, while willingness increased with greater formal education. In the adjusted models predicting willingness to allow one's child to play with an HIV-infected child, female gender and older age was associated with less willingness. However, willingness was positively associated with years of formal education. CONCLUSIONS: The caregiver-child relationship is central to a child's development. OAC already face stigma as a result of their orphaned or abandoned status; the addition of HIV-related stigma represents a double burden for these children. Further research on the prevalence of HIV-related acceptance and stigma among caregivers and implications of such stigma for child development will be critical as the policy community responds to the global HIV/AIDS orphan crisis.

Lack of cross-scale linkages reduces robustness of community-based fisheries management.

Community-based management and the establishment of marine reserves have been advocated worldwide as means to overcome overexploitation of fisheries. Yet, researchers and managers are divided regarding the effectiveness of these measures. The "tragedy of the commons" model is often accepted as a universal paradigm, which assumes that unless managed by the State or privatized, common-pool resources are inevitably overexploited due to conflicts between the self-interest of individuals and the goals of a group as a whole. Under this paradigm, the emergence and maintenance of effective community-based efforts that include cooperative risky decisions as the establishment of marine reserves could not occur. In this paper, we question these assumptions and show that outcomes of commons dilemmas can be complex and scale-dependent. We studied the evolution and effectiveness of a community-based management effort to establish, monitor, and enforce a marine reserve network in the Gulf of California, Mexico. Our findings build on social and ecological research before (1997-2001), during (2002) and after (2003-2004) the establishment of marine reserves, which included participant observation in >100 fishing trips and meetings, interviews, as well as fishery dependent and independent monitoring. We found that locally crafted and enforced harvesting rules led to a rapid increase in resource abundance. Nevertheless, news about this increase spread quickly at a regional scale, resulting in poaching from outsiders and a subsequent rapid cascading effect on fishing resources and locally-designed rule compliance. We show that cooperation for management of common-pool fisheries, in which marine reserves form a core component of the system, can emerge, evolve rapidly, and be effective at a local scale even in recently organized fisheries. Stakeholder participation in monitoring, where there is a rapid feedback of the systems response, can play a key role in reinforcing cooperation. However, without cross-scale linkages with higher levels of governance, increase of local fishery stocks may attract outsiders who, if not restricted, will overharvest and threaten local governance. Fishers and fishing communities require incentives to maintain their management efforts. Rewarding local effective management with formal cross-scale governance recognition and support can generate these incentives.

Institutional and ecological interplay for successful self-governance of community-based fisheries

The goal of this paper is to improve our understanding of the role of institutional arrangements and ecological factors that facilitate the emergence and sustainability of successful collective action in small-scale fishing social-ecological systems. Using a modified logistic growth function, we simulate how ecological factors (i.e. carrying capacity) affect small-scale fishing communities with varying degrees of institutional development (i.e. timeliness to adopt new institutions and the degree to which harvesting effort is reduced), in their ability to avoid overexploitation. Our results show that strong and timely institutions are necessary but not sufficient to maintain sustainable harvests over time. The sooner communities adopt institutions, and the stronger the institutions they adopt, the more likely they are to sustain the resource stock. Exactly how timely the institutions must be adopted, and by what amount harvesting effort must be diminished, depends on the ecological carrying capacity of the species at the particular location. Small differences in the carrying capacity between fishing sites, even under scenarios of similar institutional development, greatly affects the likelihood of effective collective action. © 2009 Elsevier B.V. All rights reserved.

Study protocol: home-based telehealth stroke care: a randomized trial for veterans.

BACKGROUND: Stroke is one of the most disabling and costly impairments of adulthood in the United States. Stroke patients clearly benefit from intensive inpatient care, but due to the high cost, there is considerable interest in implementing interventions to reduce hospital lengths of stay. Early discharge rehabilitation programs require coordinated, well-organized home-based rehabilitation, yet lack of sufficient information about the home setting impedes successful rehabilitation. This trial examines a multifaceted telerehabilitation (TR) intervention that uses telehealth technology to simultaneously evaluate the home environment, assess the patient's mobility skills, initiate rehabilitative treatment, prescribe exercises tailored for stroke patients and provide periodic goal oriented reassessment, feedback and encouragement. METHODS: We describe an ongoing Phase II, 2-arm, 3-site randomized controlled trial (RCT) that determines primarily the effect of TR on physical function and secondarily the effect on disability, falls-related self-efficacy, and patient satisfaction. Fifty participants with a diagnosis of ischemic or hemorrhagic stroke will be randomly assigned to one of two groups: (a) TR; or (b) Usual Care. The TR intervention uses a combination of three videotaped visits and five telephone calls, an in-home messaging device, and additional telephonic contact as needed over a 3-month study period, to provide a progressive rehabilitative intervention with a treatment goal of safe functional mobility of the individual within an accessible home environment. Dependent variables will be measured at baseline, 3-, and 6-months and analyzed with a linear mixed-effects model across all time points. DISCUSSION: For patients recovering from stroke, the use of TR to provide home assessments and follow-up training in prescribed equipment has the potential to effectively supplement existing home health services, assist transition to home and increase efficiency. This may be particularly relevant when patients live in remote locations, as is the case for many veterans. TRIAL REGISTRATION: Clinical Trials.gov Identifier: NCT00384748.

How Locally Designed Access and Use Controls Can Prevent the Tragedy of the Commons in a Mexican Small-Scale Fishing Community

The Seri people, a self-governed community of small-scale fishermen in the Gulf of California, Mexico, have ownership rights to fishing grounds where they harvest highly valuable commercial species of bivalves. Outsiders are eager to gain access, and the community has devised a set of rules to allow them in. Because Seri government officials keep all the economic benefits generated from granting this access for themselves, community members create alternative entry mechanisms to divert those benefits to themselves. Under Hardin’s model of the tragedy of the commons, this situation would eventually lead to the overexploitation of the fishery. The Seri people, however, are able to simultaneously maintain access and use controls for the continuing sustainability of their fishing grounds. Using insights from common- pool resources theory, I discuss how Seri community characteristics help mediate the conflict between collective action dilemmas and access and use controls.

Accuracy of proactive case finding for mental disorders by community informants in Nepal.

BACKGROUND: Accurate detection of persons in need of mental healthcare is crucial to reduce the treatment gap between psychiatric burden and service use in low- and middle-income (LAMI) countries. AIMS: To evaluate the accuracy of a community-based proactive case-finding strategy (Community Informant Detection Tool, CIDT), involving pictorial vignettes, designed to initiate pathways for mental health treatment in primary care settings. METHOD: Community informants using the CIDT identified screen positive (n = 110) and negative persons (n = 85). Participants were then administered the Composite International Diagnostic Interview (CIDI). RESULTS: The CIDT has a positive predictive value of 0.64 (0.68 for adults only) and a negative predictive value of 0.93 (0.91 for adults only). CONCLUSIONS: The CIDT has promising detection properties for psychiatric caseness. Further research should investigate its potential to increase demand for, and access to, mental health services.

Referring heroin users from compulsory detoxification centers to community methadone maintenance treatment: a comparison of three models.

BACKGROUND: Both compulsory detoxification treatment and community-based methadone maintenance treatment (MMT) exist for heroin addicts in China. We aim to examine the effectiveness of three intervention models for referring heroin addicts released from compulsory detoxification centers to community methadone maintenance treatment (MMT) clinics in Dehong prefecture, Yunnan province, China. METHODS: Using a quasi-experimental study design, three different referral models were assigned to four detoxification centers. Heroin addicts were enrolled based on their fulfillment to eligibility criteria and provision of informed consent. Two months prior to their release, information on demographic characteristics, history of heroin use, and prior participation in intervention programs was collected via a survey, and blood samples were obtained for HIV testing. All subjects were followed for six months after release from detoxification centers. Multi-level logistic regression analysis was used to examine factors predicting successful referrals to MMT clinics. RESULTS: Of the 226 participants who were released and followed, 9.7% were successfully referred to MMT(16.2% of HIV-positive participants and 7.0% of HIV-negative participants). A higher proportion of successful referrals was observed among participants who received both referral cards and MMT treatment while still in detoxification centers (25.8%) as compared to those who received both referral cards and police-assisted MMT enrollment (5.4%) and those who received referral cards only (0%). Furthermore, those who received referral cards and MMT treatment while still in detoxification had increased odds of successful referral to an MMT clinic (adjusted OR = 1.2, CI = 1.1-1.3). Having participated in an MMT program prior to detention (OR = 1.5, CI = 1.3-1.6) was the only baseline covariate associated with increased odds of successful referral. CONCLUSION: Findings suggest that providing MMT within detoxification centers promotes successful referral of heroin addicts to community-based MMT upon their release.

Community Vulnerability and Adaptation to Climate Change in East Palo Alto

Climate change and sea level rise continue to devastate communities around the globe. The impacts have a disproportionate effect on those of lower socio-economic levels, and the consequences are frequently not borne equally amongst impacted individuals (UNDP, 2013). Community-based adaptation has been widely used to assess vulnerabilities and impacts at the community level, with an inclusive process that addresses root causes of risk. The process provides the opportunity for local government to empower and engaged impacted communities in identifying and prioritizing their urgent adaptation needs. This study aims to understand East Palo Alto community vulnerabilities by assessing local knowledge and perception of risk to climate change. East Palo Alto, an urban city in California with socio-economic challenges, is vulnerable to flooding and coastal inundation. The limited financial and institutional capacity of the local government and community increases vulnerability and risk. Recommendations and steps are presented to guide actions and programs that are crucial in addressing community priorities and concerns.

Community Vulnerability and Adaptation to Climate Change in East Palo Alto

Climate change and sea level rise continue to devastate communities around the globe. The impacts have a disproportionate effect on those of lower socio-economic levels, and the consequences are frequently not borne equally amongst impacted individuals (UNDP, 2013). Community-based adaptation has been widely used to assess vulnerabilities and impacts at the community level, with an inclusive process that addresses root causes of risk. The process provides the opportunity for local government to empower and engaged impacted communities in identifying and prioritising their urgent adaptation needs. This study aims to understand East Palo Alto community vulnerabilities by assessing local knowledge and perception of risk to climate change. East Palo Alto, an urban city in California with socio- economic challenges, is vulnerable to flooding and coastal inundation. The limited financial and institutional capacity of the local government and community increases vulnerability and risk. Recommendations and steps are presented to guide actions and programs that are crucial in addressing community priorities and concerns

Gender differences in the risk of HIV infection among persons reporting abstinence, monogamy, and multiple sexual partners in northern Tanzania.

BACKGROUND: Monogamy, together with abstinence, partner reduction, and condom use, is widely advocated as a key behavioral strategy to prevent HIV infection in sub-Saharan Africa. We examined the association between the number of sexual partners and the risk of HIV seropositivity among men and women presenting for HIV voluntary counseling and testing (VCT) in northern Tanzania. METHODOLOGY/ PRINCIPAL FINDINGS: Clients presenting for HIV VCT at a community-based AIDS service organization in Moshi, Tanzania were surveyed between November 2003 and December 2007. Data on sociodemographic characteristics, reasons for testing, sexual behaviors, and symptoms were collected. Men and women were categorized by number of lifetime sexual partners, and rates of seropositivity were reported by category. Factors associated with HIV seropositivity among monogamous males and females were identified by a multivariate logistic regression model. Of 6,549 clients, 3,607 (55%) were female, and the median age was 30 years (IQR 24-40). 939 (25%) females and 293 (10%) males (p<0.0001) were HIV seropositive. Among 1,244 (34%) monogamous females and 423 (14%) monogamous males, the risk of HIV infection was 19% and 4%, respectively (p<0.0001). The risk increased monotonically with additional partners up to 45% (p<0.001) and 15% (p<0.001) for women and men, respectively with 5 or more partners. In multivariate analysis, HIV seropositivity among monogamous women was most strongly associated with age (p<0.0001), lower education (p<0.004), and reporting a partner with other partners (p = 0.015). Only age was a significant risk factor for monogamous men (p = 0.0004). INTERPRETATION: Among women presenting for VCT, the number of partners is strongly associated with rates of seropositivity; however, even women reporting lifetime monogamy have a high risk for HIV infection. Partner reduction should be coupled with efforts to place tools in the hands of sexually active women to reduce their risk of contracting HIV.

Developing a simplified consent form for biobanking.

BACKGROUND: Consent forms have lengthened over time and become harder for participants to understand. We sought to demonstrate the feasibility of creating a simplified consent form for biobanking that comprises the minimum information necessary to meet ethical and regulatory requirements. We then gathered preliminary data concerning its content from hypothetical biobank participants. METHODOLOGY/PRINCIPAL FINDINGS: We followed basic principles of plain-language writing and incorporated into a 2-page form (not including the signature page) those elements of information required by federal regulations and recommended by best practice guidelines for biobanking. We then recruited diabetes patients from community-based practices and randomized half (n = 56) to read the 2-page form, first on paper and then a second time on a tablet computer. Participants were encouraged to use "More information" buttons on the electronic version whenever they had questions or desired further information. These buttons led to a series of "Frequently Asked Questions" (FAQs) that contained additional detailed information. Participants were asked to identify specific sentences in the FAQs they thought would be important if they were considering taking part in a biorepository. On average, participants identified 7 FAQ sentences as important (mean 6.6, SD 14.7, range: 0-71). No one sentence was highlighted by a majority of participants; further, 34 (60.7%) participants did not highlight any FAQ sentences. CONCLUSIONS: Our preliminary findings suggest that our 2-page form contains the information that most prospective participants identify as important. Combining simplified forms with supplemental material for those participants who desire more information could help minimize consent form length and complexity, allowing the most substantively material information to be better highlighted and enabling potential participants to read the form and ask questions more effectively.