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Access to Social Organisations, Utilisation of Civil Facilities and Participation in Empowerment Groups by People with Disabilities in Maharashtra, India

GOVINDASAMY, Karthikeyan
DHONDGE, Suresh
DUTTA, Ambarish
MENDIS, Tina
2019

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Purpose: This survey aimed to assess the baseline level of access to social institutions, utilisation of civil facilities and participation in empowerment schemes by people with disabilities in Amravati district of Maharashtra State, India.

 

Method: Sixty villages from two blocks in Amravati district were randomly selected for the survey. From these villages, 522 households were sampled and 3056 individuals were surveyed. Interviews were conducted with 590 individuals with disability from among the surveyed population. The structured interview schedule consisted of demographic data, access to social organisations, utilisation of civil services, and participation in empowerment schemes. 

 

Results: Locomotor disability was the most prevalent (44.6%) type of disability in the study area. Disabilities were more often present among male adolescents and young adults than among the older population and females. Over 50% of the study participants had no occupation (including children and students) and had not been to school. Only 48% had achieved secondary education and more. The proportion of disability among people belonging to Scheduled Castes and Scheduled Tribes was considerably higher than among the general population. Access to social institutions was less than 50% for most of the items, and was even lower among females. Except for the ration card and Aadhar card, civil services were generally under-utilised by people with disability. Only 3.2% of the participants were members of self-help groups, and not a single person was a member of the Disabled People’s Organisation.

 

Conclusions:  In the study area access to social institutions, utilisation of civil services and participation in empowerment schemes was very low.

 

Limitations: Data, including general socio-demographic, access and utility data, was not collected for the general population but was limited to people with disabilities. This restricted the scope for comparison between people with and without disabilities.

 

 

Disability, CBR and Inclusive Development, Vol 30, No 1 (2019)

Changes in social participation of persons affected by leprosy, before and after multidrug therapy, in an endemic state in Eastern India

RAMASAMAY, Senthilkumar
2019

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Purpose: In general, multidrug therapy (MDT) completion rate and the change in disability levels before and after medical treatment are reported as outcomes in leprosy programmes. Changes in activity and social participation levels are rarely reported, possibly because the parameters are more difficult to measure. The study aimed to assess and evaluate the changes in social participation among leprosy-affected persons after completion of MDT.

 

Method: An observational study was conducted among 108 newly-diagnosed leprosy- affected clients, who were registered at the Leprosy Referral Hospital in Champa, Chhattisgarh. Their disability levels pre- and post- MDT were assessed using the WHO Disability Grading, and their social participation level was assessed using the Participation Scale.

 

Results: Of the 108 clients registered during the study period, 90 completed the full course of MDT and were included in the analysis. The majority of these 90 clients or 83% were multibacillary and 23% had Grade 2 disability at the time of diagnosis. At the end of MDT with steroids therapy for reaction and neuritis, the proportion of clients with no participation restriction increased from 76% to 93%. Clients with visible impairments had more restriction as compared to those with no deformity or no visible deformity, before and after MDT. Among those with visible impairments, 78% had mild to severe restriction before MDT and it declined to 26% on completion of treatment.

 

Conclusion: Presence of Grade 2 disability at the time of diagnosis was significantly associated with participation restriction. MDT and steroid therapy for management of reaction and/or neuritis improves the participation level of leprosy-affected clients, suggesting that early detection and appropriate management would reduce their risk of participation restriction.

Strengthening personal and family resilience: a literature review for the leprosy context

VAN'T NOORDENDE, Anna Tiny
KUIPERS, Kim
PEREIRA DSZ B
January 2019

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 A literature review was conducted to identify core elements of interventions to promote resilience in individuals and family members in the face of discrimination in the case of leprosy. A multi-phase adapted scoping review of English literature and a narrative review of the Portuguese language literature were carried out. Three main intervention focus areas in our review were identified: individual level, social/community level and system level.

 

Lepr Rev (2019) 90, 88–104

Malaria

WORLD HEALTH ORGANIZATION. Regional Office for Africa (WHO AFRO)
2018

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A short overview of malaria is given, with it's symptoms and treatment and the WHO response

Household expenditure on leprosy outpatient services in the Indian health system: A comparative study.

TIWARI, Ajun
et al
January 2018

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The primary objective of this study is to estimate the expenditure in primary (outpatient) care incurred by leprosy patients in two different health system settings in India. The secondary objective is to compare the effect of the health systems on consumer behaviour and practices. 

The study followed a cross-sectional design, where a cohort from the Union Territory of DNH (an administrative division ruled directly by the federal government) was compared with a cohort from Umbergaon block of Valsad district, Gujarat, India. A block is the smallest administrative unit under a district. The cohorts were leprosy cases detected between April 2015 and March, 2016. A sample of 120 participants from each group was selected randomly. In the financial year of 2015–16, DNH reported 425 and Umbergaon reported 287 cases. 

A household survey was conducted between June and October, 2016 by means of a structured questionnaire collecting data on patient demographics, HH socioeconomic status, accessibility of health services, treatment seeking history and OPD expenditure. Respondents were asked to report on the last three OPD visits, either in a public or private facility, in the last 6 months. 

The costs were categorized as direct and indirect expenditure. The direct part included the expenditure on consultation, investigations and medicines & supplies. The indirect part constituted expenditure on transport, food, and days lost during illness of the patient and attendant

PLOS Neglected Tropical Diseases, January 4, 2018

https://doi.org/10.1371/journal.pntd.0006181

Caregivers' views on stigmatisation and discrimination of people affected by leprosy in Ghana

ASAMPONG, Emmanuel
DAKO-GYEKE, Mavis
ODURO, Razak
January 2018

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In Ghana, the social interpretation of leprosy regardless of the language, culture and tradition engenders stigmatisation and discrimination that leads to social rejection and exclusion of persons who have been cured of the disease. Often, these persons are cared for by relatives who happen to live with them in a confined place. From the views of these caregivers, this paper identifies areas of stigmatising and discriminatory tendencies against people affected by leprosy who reside in a Leprosarium in Accra. A qualitative interview with semi-structured interviews were conducted for twenty caregivers.

Managing epidemics - Key facts about major deadly diseases

WORLD HEALTH ORGANISATION (WHO)
2018

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The manual is structured in three parts.

  • Part One “Epidemics of the 21st century” provides vital insights on the main features of the 21st century upsurge and the indispensable elements to manage them.
  • Part Two “Be in the know. 10 key facts about 15 deadly diseases” contains key information about 15 diseases (Ebola Virus Disease, Lassa Fever, Crimean-Congo haemorrhagic fever, Yellow Fever, Zika, Chikungunya, Avian and Other Zoonotic Influenza, Seasonal Influenza, Pandemic Influenza, Middle East Respiratory Syndrome, Cholera, Monkeypox, Plague, Leptospirosis and Meningococcal Meningitis). This section provides tips on the interventions required to respond to epidemics of all these diseases.
  • Part Three “Tool boxes” gives an overview and summarized guidance on some other important topics, including: the role of WHO, the International Coordinating Group, laboratory diagnosis and shipment of infectious diseases substances, and vector control.

 

The handbook enables the three levels of WHO – its Headquarters, Regional Offices and Country Offices to work efficiently together by building the foundations of a shared conceptual and thinking framework, which includes common terminology. 

Report of the informal consultation on stopping discrimination and promotion inclusion of persons affected by Leprosy. New Delhi, 14–16 Nov 2017

COOREMAN, Erwin
WHO SEARO/Department of Control of Neglected Tropical Diseases
et al
2018

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An Informal Consultation on Stopping Discrimination and Promoting Inclusion of Persons Affected by Leprosy was held in New Delhi from 14 to 16 November 2017. Forty delegates with diverse backgrounds, experience and expertise enriched the discussions. Persons affected by leprosy brought to the table the challenges faced in daily life and suggested actions to be taken to reduce stigma and discrimination related to leprosy. Representatives of national programmes presented actions taken in their respective countries. The participants acknowledged the fact that stigma and discrimination related to leprosy still exists at a significant level. Information about stigma and discrimination related to leprosy needs to be collected in a more systematic manner to assess the magnitude of the problem and to further plan activities to reduce it.

Key recommendations from the consultation included counselling and reporting of incidences of discrimination. Efforts should be continued to inform facts about leprosy to the community.

The participants strongly recommended that leprosy programmes should adopt a ‘rights-based approach’ in line with the Sustainable Development Goals.

Toolkit for understanding and challenging leprosy related stigma for Civil Society Organisations in India

JOY, Anish
et al
2017

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This toolkit is intended primarily for use by CSO's at the community level in India for use with field workers and local governments for challenging stigma and discrimination against people affected by leprosy/disabilities. The toolkit uses simple activities and pictures and is based on a participatory approach which requires active involvement of the group being trained. There are 6 modules:

What is leprosy

What is stigma

How we stigmatise others

How it feels to be stigmatised

Understanding human rights

Action towards inclusion

There are 10 appendices providing supporting information for the toolkit  

Disability, CBR and inclusive development (DCID)

2016

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"Disability, CBR and Inclusive Development aim to enhance knowledge in the field of disability, addressing the needs of practitioners in the field (particularly those from developing countries), policy makers, disabled persons’ organizations and the scientific community. The journal encourages publication of information that is evidence-based, to improve current knowledge and programmes implementation, and will be openly and freely accessible to all readers" ”Published four times a year, previously published two times per year
Free

Association between Zika virus infection and microcephaly in Brazil, January to May, 2016: preliminary report of a case-control study

DE ARAUJO, Thalia Velho Barreto
et al
December 2016

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The microcephaly epidemic, which started in Brazil in 2015, was declared a Public Health Emergency of International Concern by WHO in 2016. Preliminary results of a case-control study investigating the association between microcephaly and Zika virus infection during pregnancy are reported. A case-control study was carried out in eight public hospitals in Recife, Brazil. Cases were neonates with microcephaly. Two controls (neonates without microcephaly), matched by expected date of delivery and area of residence, were selected for each case.

The Lancet Infectious Diseases,  Vol. 16, No. 12, pp. 1356–1363, Dec 2016

DOI: http://dx.doi.org/10.1016/S1473-3099(16)30318-8

Estimation of Zika virus prevalence by appearance of microcephaly

SAAD-ROY, C M
van den DRIESSCHE, P
MA, J L
December 2016

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There currently is a severe Zika Virus (ZIKV) epidemic in Brazil and other South American countries. Due to international travel, this poses severe public health risk of ZIKV importation to other countries. We estimate the prevalence of ZIKV in an import region by the time a microcephaly case is detected, since microcephaly is presently the most significant indication of ZIKV presence. A mathematical model to describe ZIKV spread from a source region to an import region was established. This model incorporates both vector transmission (between humans and mosquitoes) and sexual transmission (from males to females). Account was taken of population structure through a contact network for sexually active individuals. Parameter values of the model are either taken from the literature or estimated from travel data

BMC Infectious Diseases (2016) 16:754 DOI 10.1186/s12879-016-2076-z

Exploring the Complexities of Leprosy-related Stigma and the Potential of a Socio-economic Intervention in a Public Health Context in Indonesia

DADUN, Dadun
PETERS, Ruth
LUSLI, Mimi
MIRANDA-GALARZA, Beatriz
VAN BRAKEL, Wim
ZWEEKHORST, Marjolein
DAMAYANTI, Rita
IRWANTO, Irwanto
BUNDERS, Joske
2016

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Purpose: This article explores the complexities of leprosy-related stigma and the potential effectiveness of a socio-economic intervention in Cirebon District, Indonesia.

 

Methods: A qualitative approach was adopted. 53 people affected by leprosy were interviewed, and 17 focus group discussions were conducted among people affected by leprosy, community and religious leaders, and health providers and other key persons who were all purposively selected.

 

Results:  People affected by leprosy face major socio-economic consequences. This was confirmed by key persons. Several opportunities for a possible socio-economic intervention were perceived, as also the barriers. People affected by leprosy are constrained by certain aspects of the health system (e.g., the health providers’ negative attitudes), views in society (e.g., misunderstandings about the condition, stigma), and the physical and social consequences of the disease (impairments, feelings of shame). Study participants identified strategies to deal with these barriers, as well as specific activities for a socio-economic intervention; in particular, the training of staff responsible for implementation.

 

Conclusion and Implications: Socio-economic interventions in the field of leprosy need to anticipate the barriers and develop strategies to deal with them. Cooperation between people working in the health system and those in the welfare / financial system is needed, to improve the quality of life of people affected by leprosy

Zika: the origin and spread of a mosquito-borne virus

KINDHAUSER, Mary Kay
ALLEN Tomas
FRANK Veronika
SANTHANAA Ravi Shankar
DYE Christopher
September 2016

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The temporal and geographical distribution of Zika virus infection and associated neurological disorders, from 1947 to 1 February 2016, when Zika became a Public Health Emergency of International Concern (PHEIC) are described following an extensive literature search. During this period a total of 74 countries and territories had reported human Zika virus infections. The timeline in this paper charts the discovery of the virus (1947), its isolation from mosquitos (1948), the first human infection (1952), the initial spread of infection from Asia to a Pacific island (2007), the first known instance of sexual transmission (2008), reports of Guillain-Barré syndrome (2014) and microcephaly (2015) linked to Zika infections and the first appearance of Zika in the Americas (from 2015). The paper concludes that the Zika virus infection in humans appears to have changed in character as its geographical range has expanded from equatorial Africa and Asia. The change is from an endemic, mosquito-borne infection causing mild illness to one that can cause large outbreaks linked with neurological sequelae and congenital abnormalities

 

Detecting Guillain-Barré syndrome caused by Zika virus using systems developed for polio surveillance

KANDEL, Nirmal
LAMICHHANE Jaya
TANGERMANN Rudolf
RODIEA Guenael
September 2016

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With increasing evidence of linkages between Guillain-Barré syndrome and Zika virus infection, the importance of enhancing Guillain-Barré syndrome surveillance is highlighted and use of existing surveillance systems like the one for acute flaccid paralysis (AFP) used by polio eradication programmes is proposed. A process for using the AFP surveillance system for Zika virus surveillance is outlined. Worldwide distribution maps of  Aedes aegypti and Aedes albopictus are presented and control measures following Zika infection testing are listed.

Integration of childhood TB into maternal and child health, HIV and nutrition services. A case study from Malawi.

VERKUIJL, Sabine
et al
September 2016

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"Country case studies were conducted in Uganda and Malawi in order to document and analyse experiences and perspectives on childhood TB integration into other programmes at country level and related health system requirements. The aim was to inform the broader thinking about integration of childhood TB services. The Malawi case study identified and described different approaches to integration and unpacked the integration process. The perspective on TB integration of different relevant health actors at national and district level are described. The case study used a health systems approach and focused on the community and primary levels of the health system, paying attention to factors related to children of different ages in a lifecycle approach. The method for the case study included document review, consultations with key health actors at national and district level, a facility visit and a participatory workshop at national level. An analytical framework approach was used to investigate the extent of integration of childhood TB interventions in multiple dimensions. An assessment tool for the case studies was developed, summarising the assessment questions by theme, combining a number of existing tools and frameworks on health care integration in general and childhood TB and benchmarks for integrated community case management (iCCM)"

Integration of childhood tuberculosis into maternal and child health, HIV and nutrition services: A case study from Uganda

VERKUIJL, Sabine
et al
September 2016

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"Country case studies were conducted in Uganda and Malawi to document and analyse experiences and perspectives on childhood TB integration into other programmes at country level and related health system requirements. The aim was to inform the broader thinking about integration of childhood TB services. The Uganda case study identified and described different approaches to integration and unpacked the integration process. The perspective on TB integration of different relevant health actors at national and district level are described. The case study used a health systems approach and focused on the community and primary levels of the health system, paying attention to factors related to children of different ages in a lifecycle approach. The methodology for the case study included document review, consultations with key health actors at national and district level, a facility visit and a participatory workshop at national level. An analytical framework approach was used to investigate the extent of integration of childhood TB interventions in multiple dimensions. An assessment tool for the case studies was developed, summarising the assessment questions by theme, combining a number of existing tools and frameworks on health care integration in general and childhood TB and iCCM benchmarks"

WHO : microcephaly and zika virus infection : questions and answers

COSTELLO, Anthony
February 2016

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Dr Anthony Costello, Director of WHO's Department of Maternal, Newborn, Child and Adolescent Health, answers some key questions on Microcephaly and Zika virus infection including concerning how a pregnant women would know if her baby is infected, what support would be needed if the child has Microcephaly and what steps can be taken to avoid being infected

Zika virus

HESPERIAN HEALTH GUIDES
February 2016

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A short introduction to the Zika virus and pregnancy. This resources details the signs of the Zika virus and the difference between Zika virus, dengue, chikungunya, or malaria are outlined. How the mosquito spreads the disease, the prevention of mosquito bites, ways in which communities can prevent mosquito illnesses and removal of mosquito breeding sites from around the house and community are also covered

 

Note: resource is available online and in downloadable pdf formats

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