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.

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.

Community-based Data Validation Practices in Citizen Science

Technology-supported citizen science has created huge volumes of data with increasing potential to facilitate scientific progress, however, verifying data quality is still a substantial hurdle due to the limitations of existing data quality mechanisms. In this study, we adopted a mixed methods approach to investigate community-based data validation practices and the characteristics of records of wildlife species observations that affected the outcomes of collaborative data quality management in an online community where people record what they see in the nature. The findings describe the processes that both relied upon and added to information provenance through information stewardship behaviors, which led to improved reliability and informativity. The likelihood of community-based validation interactions were predicted by several factors, including the types of organisms observed and whether the data were submitted from a mobile device. We conclude with implications for technology design, citizen science practices, and research.

Expanding DDR: The Transformative Role of Former Prisoners in Community-Based Reintegration in Northern Ireland

This article explores the process of Disarmament, Demobilization and Reintegration (DDR) in Northern Ireland. In particular, it examines the role and experiences of former combatants, who were incarcerated during the Troubles. It is shown that upon release from prison, many of these former combatants have played key roles in the development of community-based initiatives, which have not only facilitated the reintegration of former prisoners, but have also contributed to a broader process of post-conflict regeneration and social development. The author considers the notion of expanding the ‘R’ phase of DDR, and contends that additional attention needs to be paid to both to the specific needs of former combatants/former prisoners and to their involvement in the overall process of reintegration and peacebuilding.

Prevalence of Adverse Childhood Experiences in a University Population: Associations with Use of Social Services

This paper is part of a series published by the Multiple Adverse Childhood Experiences research group based at QUB. First-year undergraduates took part in an online survey, self-reporting on Adverse Childhood Experiences (ACE) and measures of social service contact. The 10-item ACE questionnaire measures abuse, neglect and household dysfunction (current sample ?????????The study achieved a response rate of 18.6%. (N=765; 552 (72.7%) females and 212 (27.2%) males; 21.8% reporting having been educated at a ‘Protestant’ school, 42% reporting having been educated at a ‘Catholic’ school and 20.4% reporting previous school religious affiliation as ‘other’). Despite obvious non-response bias, ACE scores for this student population are comparable with college-educated populations in the US. Current respondents with previous social service contact are over twenty three times more likely than peers to have experienced multiple adversities. Findings support the hypothesis that social service contact, alone, acts as a proxy indicator for the presence of multiple adverse childhood experiences, with no significant elevation in ACE scores for those going through court proceedings or subject to child protection registration. This study supports current concerns by policy makers to target those children experiencing multiple adversities.

Evaluating the effectiveness of community-based dementia care networks:The Dementia Care Networks' Study

Purpose: The Dementia Care Networks' Study examined the effectiveness of four community-based, not-for-profit dementia networks. The study involved assessing the relationship between the types of administrative and service-delivery exchanges that occurred among the networked agencies and the network members' perception of the effectiveness of these exchanges. Design and Methods: With the use of a case-study method, the evolution, structure, and processes of each network were documented. Social network analysis using a standardized questionnaire completed by member agencies identified patterns of administrative and clinical exchanges among networked agencies. Results: Differences were found between the four networks in terms of their perceptions of service-delivery effectiveness; perceptions of administrative effectiveness did not factor significantly. Exchanges between groups of agencies (cliques) within each of the four networks were found to be more critical than those between individual agencies within each network. Implications: Integration-measured by the types of exchanges within as opposed to across networks-differentiated the four networks studied. This research contributes to our understanding of the use of multiple measures to evaluate the inner workings of service delivery and their impact on elder health and elder health care. Copyright 2005 by The Gerontological Society of America.

Mental health needs of children and youth with learning disabilities:Overview of a community needs assessment

The purpose of the present report is to describe a community needs assessment that puts the process and choice of a suitable approach into a context. The study examined the mental health needs of children and youth with learning disabilities and their families and how they fit within the continuum of services in Metropolitan Toronto. A series of recommendations was developed for the Ministry of Community and Social Services. The recommendations emphasize: prevention, training and consultation, and research. The study illustrates the importance of involving relevant constituencies in both the planning of a needs assessment and the formulation and implementation of recommendations based on the investigation.

Impact of community based, specialist palliative care teams on hospitalisations and emergency department visits late in life and hospital deaths: a pooled analysis

Objective: To determine the pooled effect of exposure to one of 11 specialist palliative care teams providing services in patients’ homes.Design: Pooled analysis of a retrospective cohort study.Setting: Ontario, Canada.Participants: 3109 patients who received care from specialist palliative care teams in 2009-11 (exposed) matched by propensity score to 3109 patients who received usual care (unexposed).Intervention: The palliative care teams studied served different geographies and varied in team composition and size but had the same core team members and role: a core group of palliative care physicians, nurses, and family physicians who provide integrated palliative care to patients in their homes. The teams’ role was to manage symptoms, provide education and care, coordinate services, and be available without interruption regardless of time or day.Main outcome measures: Patients (a) being in hospital in the last two weeks of life; (b) having an emergency department visit in the last two weeks of life; or (c) dying in hospital.Results: In both exposed and unexposed groups, about 80% had cancer and 78% received end of life homecare services for the same average duration. Across all palliative care teams, 970 (31.2%) of the exposed group were in hospital and 896 (28.9%) had an emergency department visit in the last two weeks of life respectively, compared with 1219 (39.3%) and 1070 (34.5%) of the unexposed group (P<0.001). The pooled relative risks of being in hospital and having an emergency department visit in late life comparing exposed versus unexposed were 0.68 (95% confidence interval 0.61 to 0.76) and 0.77 (0.69 to 0.86) respectively. Fewer exposed than unexposed patients died in hospital (503 (16.2%) v 887 (28.6%), P<0.001), and the pooled relative risk of dying in hospital was 0.46 (0.40 to 0.52).Conclusions: Community based specialist palliative care teams, despite variation in team composition and geographies, were effective at reducing acute care use and hospital deaths at the end of life.

An evaluation of palliative care services for cancer patients in the Southern Health and Social Services Board of Northern Ireland.

An interview study of 55 lay carers of people who died from cancer in the Southern Board of Northern Ireland was undertaken using a combination of closed-format and open-ended questions. The aim of the study was to evaluate palliative care services delivered in the last six months of their lives to cancer patients who died either at home or in hospital. Two-thirds of the deaths (36) occurred in the domestic home, 45 of the deceased were admitted as hospital inpatients, and the great majority were in receipt of community nursing (53) and general practitioner (54) services. Open-ended questions were used to allow respondents to give their views about services in some detail and their views about good and bad aspects of services were sought. While they were generally satisfied with services specific areas of difficulty were identified in each aspect of care addressed by the study. The most favourable assessments were made of community nursing with the greatest number of negative comments being made about inpatient hospital care. Differing interests between some of those who were dying and their lay carers were found in two areas: the receipt of help from nonfamily members and the information that the deceased received about their terminal status.

The Effect of Community-Based Specialist Palliative Care Teams on Place of Care

BACKGROUND: Prior research on community-based specialist palliative care teams used outcome measures of place of death and/or dichotomous outcome measures of acute care use in the last two weeks of life. However, existing research seldom measured the diverse places of care used and their timing prior to death.

OBJECTIVE: The study objective was to examine the place of care in the last 30 days of life.

METHODS: In this retrospective cohort study, patients who received care from a specialist palliative care team (exposed) were matched by propensity score to patients who received usual care in the community (unexposed) in Ontario, Canada. Measured was the percentage of patients in each place of care in the last month of life as a proportion of the total cohort.

RESULTS: After matching, 3109 patients were identified in each group, where 79% had cancer and 77% received end-of-life home care. At 30 days compared to 7 days before death, the exposed group's proportions rose from 33% to 41% receiving home care and 14% to 15% in hospital, whereas the unexposed group's proportions rose from 28% to 32% receiving home care and 16% to 22% in hospital. Linear trend analysis (proportion over time) showed that the exposed group used significantly more home care services and fewer hospital days (p < 0.001) than the unexposed group. On the last day of life (place of death), the exposed group had 18% die in an in-patient hospital bed compared to 29% in usual care.

CONCLUSION: Examining place of care in the last month can effectively illustrate the service use trajectory over time.

Perspectives of Parents of Children with Autism Spectrum Disorder on a Community-Based Parent Education Program

In 2012 a community-based agency that oversees Intensive Behaviour Intervention services for young children diagnosed with Autism Spectrum Disorder (ASD) began delivering newly developed curricula to parents of eligible children. The curricula’s intent was to inform parents about ASD and Applied Behaviour Analysis, to increase their awareness of available community resources, and assist them to be active and engaged in their child’s learning. This mixed-method study used a program-specific survey and focus groups to explore the perspectives parents had on their involvement in these education sessions. Through constant comparison analysis 4 major and 3 minor themes emerged. In general, parents acknowledged that this parent education program included relevant content and a favourable delivery format. The study summarized a number of well-articulated, practical suggestions parents provided. Implications for practice would be applicable to educators interested in providing quality group-based education to parents of young children with ASD.

Continuation and discontinuation of local institution in community based natural resource management

Currently the push toward frontier areas, which until twenty years ago were still largely untouched by commercial agriculture, is taking place on a massive scale. This push is being driven not the least by global economic developments, such as the price increase of agriculture commodities like coffee and cocoa. In most cases the indigenous communities become trapped between the state monopoly in natural resource management and the competition for resources by external actors. In this processes the indigenous communities start to lose their access to resources. Another victim in this process is the environment where the natural resources are imbedded. International and national organizations working to conserve environment have became conscious of the important role that indigenous people could fulfill as partners in this endeavour. This partnership in struggle has produced a new discourse on the relationship between indigenous people and their environment. As a further consequence, programs were set up to develop what became known as Community Based Natural Resource Management (CBNRM) with its numerous variations. Based on a case study in a village on the eastern border of the Lore Lindu National Park in Central Sulawesi, this study questioned the basic assumption behind the concept of Community Based Natural Resource Management (CBNRM). Namely the assumption that communities living at the margin of forest are socially and culturally homogenous, still more or less egalitarian, and basically living in harmony with their natural environment. This study was inspired by the persistent critique – although still a minority – on the basic assumption the CBNRM from academicians and practitioners working through the Entitlement perspective. Another inspiration was the mounting critique toward the participatory approach. In its effort the study explore further the usefulness of certain approaches. One of the approach much relied on in this study was the local history of the community studied, through exerting oral and local written documents on local history, legends and local stories. These sources proofed quite capable in bringing the local history into the light. Another was the actor oriented approach, which later came to be supported by the concept of Social Pool Resources. The latter concept proofed to be useful as analytical instrument to integrate social institutions and the common pool resources, as a field of action for the different actors as human agencies.

Doing more harm than good? Community based natural resource management and the neglect of local institutions in policy development

Approaches to natural resource management emphasise the importance of involving local people and institutions in order to build capacity, limit costs, and achieve environmental sustainability. Governments worldwide, often encouraged by international donors, have formulated devolution policies and legal instruments that provide an enabling environment for devolved natural resource management. However, implementation of these policies reveals serious challenges. This article explores the effects of limited involvement of local people and institutions in policy development and implementation. An in-depth study of the Forest Policy of Malawi and Village Forest Areas in the Lilongwe district provides an example of externally driven policy development which seeks to promote local management of natural resources. The article argues that policy which has weak ownership by national government and does not adequately consider the complexity of local institutions, together with the effects of previous initiatives on them, can create a cumulative legacy through which destructive resource use practices and social conflict may be reinforced. In short, poorly developed and implemented community based natural resource management policies can do considerably more harm than good. Approaches are needed that enable the policy development process to embed an in-depth understanding of local institutions whilst incorporating flexibility to account for their location-specific nature. This demands further research on policy design to enable rigorous identification of positive and negative institutions and ex-ante exploration of the likely effects of different policy interventions.