Canada's neglected tropical disease research network: who's in the core-who's on the periphery?

BACKGROUND: This study designed and applied accessible yet systematic methods to generate baseline information about the patterns and structure of Canada's neglected tropical disease (NTD) research network; a network that, until recently, was formed and functioned on the periphery of strategic Canadian research funding. METHODOLOGY: MULTIPLE METHODS WERE USED TO CONDUCT THIS STUDY, INCLUDING: (1) a systematic bibliometric procedure to capture archival NTD publications and co-authorship data; (2) a country-level "core-periphery" network analysis to measure and map the structure of Canada's NTD co-authorship network including its size, density, cliques, and centralization; and (3) a statistical analysis to test the correlation between the position of countries in Canada's NTD network ("k-core measure") and the quantity and quality of research produced. PRINCIPAL FINDINGS: Over the past sixty years (1950-2010), Canadian researchers have contributed to 1,079 NTD publications, specializing in Leishmania, African sleeping sickness, and leprosy. Of this work, 70% of all first authors and co-authors (n = 4,145) have been Canadian. Since the 1990s, however, a network of international co-authorship activity has been emerging, with representation of researchers from 62 different countries; largely researchers from OECD countries (e.g. United States and United Kingdom) and some non-OECD countries (e.g. Brazil and Iran). Canada has a core-periphery NTD international research structure, with a densely connected group of OECD countries and some African nations, such as Uganda and Kenya. Sitting predominantly on the periphery of this research network is a cluster of 16 non-OECD nations that fall within the lowest GDP percentile of the network. CONCLUSION/SIGNIFICANCE: The publication specialties, composition, and position of NTD researchers within Canada's NTD country network provide evidence that while Canadian researchers currently remain the overall gatekeepers of the NTD research they generate; there is opportunity to leverage existing research collaborations and help advance regions and NTD areas that are currently under-developed.

Partnership for rehabilitation: looking beyond impairments.

Rehabilitation of leprosy-affected persons extends beyond the physical domain of prevention and treatment of impairments. A holistic rehabilitative approach should include addressing those problems that people may have in activities and difficulties that may prevent people from fully participating in social functions, i.e. being fully accepted as integrated members of the societies and communities to which they belong. This article highlights the activities of the Partnership for the Rehabilitation Program (PFR) of the International Nepal Fellowship (INF), Pokhara, Nepal. These activities aim to prevent, reduce or alleviate problems and difficulties that leprosy-affected persons may face in being respected and being contributing members of the communities of which they are a part.

Answering the rehabilitation needs of leprosy-affected persons in integrated setting through primary health care services and community-based rehabilitation.

This article aims to discuss the strategies for answering the rehabilitation needs of persons with leprosy-related disabilities in integrated settings through primary health care (PHC) services and community-based rehabilitation (CBR). While the provision of rehabilitation services through the PHC system remains problematic in most developing countries, the article concludes that CBR programmes have the potential for rehabilitation of leprosy-affected persons in integrated settings. However, the limited coverage of CBR programmes may pose an obstacle to such an approach. The author suggests the use of existing specific rehabilitation infrastructures meant only for leprosy-affected persons for initiating, sustaining and extending the CBR coverage to the surrounding communities. At the same time, the author asks for support and strengthening of organizations of leprosy-affected persons, promoting their active involvement in all rehabilitation processes.

Making sense of rehabilitation projects: classification by objectives.

Rehabilitation of disabled persons can take many different forms according to the socio-cultural and political context in which it is undertaken. Some approaches have emphasized the restoration of the physical function of the client, while others have looked beyond to psychological and social well-being. Some have built on the expertise of professionals while others have emphasized the caring capacity available in the family and the community and sought to reinforce it. Besides providing a wide range of possible services to disabled persons, rehabilitation seeks to change the attitudes that prevail in society as a whole and promote the integration of disabled people into society with equal rights and opportunities. This paper reviews a range of models and approaches which have been put forward in the international debate on rehabilitation. Furthermore, four dimensions are described which can be used to characterize and define classes of rehabilitation projects based on the objectives that are defined for them. Thus types of rehabilitation projects can be distinguished. Management, evaluation and technical support for rehabilitation projects need to take these essential characteristics into account.

Community participation in case detection of leprosy in Nagpur district of Maharashtra.

Involving special community groups for new case detection is of great importance for achieving the target of elimination of leprosy. During 1998-99, thirty village level Mahila mandals (women's groups), 6950 teachers and students and 34,548 heads of families were co-opted to participate in case detection. They examined 56,113 persons including 378,959 school students and 184,940 family members. Of the examined population, 275 were suspected to be cases of leprosy by mahila mandals, 411 by teachers and students and 747 by heads of families. Subsequent examination of the suspected cases by trained medical officers and paramedical workers confirmed 203 of them to be cases of leprosy. This exercise showed that when proper attempts were made to involve the community, case detection activity became easier, besides helping to disseminate knowledge about leprosy in the community.

Opinöes sobre a doença entre membros da rede social de pacientes de hanseníase no Recife / Opinions about Hansen's disease among the members of patients' social network in Recife

This article describes a study done in Recife, Brazil, between November 1993 and July 1994 to explore the opinions of the members of the social network (for example, family members, friends, and neighbors) of carriers of Hansen's disease regarding their estimation, interpretation, and management of physical manifestations of the disease in the time leading up to diagnosis. The sample consisted of 93 members of the social network, ranging in age between 20 and 70 years, who supported the course of action of 83 patients diagnosed in the study period. The analysis sought to detect differing capacities among the members of the patients' social network to discriminate between persons classified as cases (presence of disabilities or precursor lesions) or controls. The study found a lack of information about transmission of Hansen's disease and revealed a transitional phase in which there was expectation of cure along with a stigmatizing view of the consequences of the disease. Only one-quarter of the study subjects suspected prior to diagnosis that the patient had Hansen's disease, which suggests low perception of the risk represented by the disease and reinforces the idea that its physical manifestations can be invisible. The results reveal a profile of perception and management of Hansen's disease that favors its propagation and the development or worsening of its physical and social consequences

O presente artigo descreve um estudo realizado no Recife, Brasil, entre novembro de 1993 e julho de 1994, com a finalidade de explorar as opiniões dos membros da rede social (por exemplo, familiares, amigos e vizinhos) de portadores de hanseníase na avaliação, interpretação e manejo das manifestações corporais da doença na trajetória que levou ao diagnóstico. A amostra constou de 93 membros da rede social, com idade entre 20 e 70 anos, que apoiaram o curso de ação de 83 pacientes diagnosticados no período do estudo. A análise buscou detectar variáveis capazes de discriminar os membros da rede de apoio dos pacientes de hanseníase classificados como casos (presença de incapacidades ou lesões precursoras de incapacidades) ou controles. O estudo evidenciou a escassez de informações sobre a transmissão da hanseníase e revelou um quadro transicional onde se confrontam expectativa de cura e uma visão estigmatizante das conseqüências da doença. Apenas uma quarta parte dos sujeitos do estudo suspeitou, antes do diagnóstico, que o paciente era portador de hanseníase, o que sugere baixa percepção do risco representado pela doença e reforça a concepção da invisibilidade das suas manifestações corporais. Os resultados mostram um perfil de percepção e manejo da hanseníase que pode facilitar a propagação da doença e a instalação ou agravamento das suas conseqüências físicas e sociais.