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Disability and global health: Special issue of International Journal of Environmental Research and Public Health

KUPER, Hannah
POLAK, Sarah
Eds
2019

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Papers included in this special issue are:

 

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.

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

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) - Vol 27, No 4 (2016)

THOMAS, Maya
Ed
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

Triple jeopardy : tackling the discrimination facing girls and women with leprosy

GRIFFEY, Harriet
Eds
March 2015

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This report examines the triple discrimination situation faced by women and girls with leprosy in developing countries, because of their gender, the disabilities that can result from the disease and the impact of its stigma. Studies also show that in some countries they are less likely than men to be diagnosed early, and so are at greater risk of developing a lifelong disability. This report shows what can be done to achieve access to treatment and a better outcome for girls and women affected by leprosy

Social participation of diabetes and ex-leprosy patients in the Netherlands and patient preference for combined self-care groups

DE VRIES, Henry JC
DE GROOT, Roos
VAN BRAKEL, Wim H
August 2014

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This study compared the social constraints of diabetic patients and ex-leprosy patients and investigated combined self-care groups for ex-leprosy patients and diabetic patients. The physical complications and social problems in ex-leprosy and diabetic patients with neuropathy are similar. Despite the fact that diabetic patients preferred disease-specific, homogeneous self-care groups, the authors believe that the option of combined groups is a promising strategy. Therefore, further research is warranted into the acceptance and impact of self-care groups as a strategy to reduce social constraints by diseases causing neuropathy 

Frontiers in Medicine, Vol 1

Perceived needs related to social participation of people with leprosy-related disabilities and other people with disabilities in Cambodia : a qualitative study

HEEREN, Marie-Julie J
KY, Lai
VAN BRAKEL, Wim H
January 2014

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The objective of this study was to describe the similarities and differences in perceived needs related to social participation of persons with leprosy-related disabilities and other persons with disabilities in Cambodia, and to suggest key interventions to promote participation in the community. A cross-sectional study was completed by conducting a pilot-tested, face-to-face semi-structured interviews, with open and closed questions, and focus group discussions to investigate the perceived needs related to social and economic participation in the community. The study found that both groups of people with disabilities have similar needs to improve participation in social and economic life, and the authors suggest that it is best to form multi-disability self-help groups to empower all the affected people and help fight poverty

Disability, CBR & Inclusive Development Journal, Vol 25, No 3

Lessons learned on inclusion of people with disability in the ICCO Gaibandha food security project for ultra poor women, 2009-2013

BRUIJN, Paulien
October 2013

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The Gaibandha Food Security Program is one of the first programs that mainstreams disability on a large scale, and the Food Security Project in Gaibandha was implemented in order to improve the food security situation of 40.000 women headed households. In April 2013 an internal evaluation took place on the disability mainstreaming process within the FSUP Gaibandha project. This report reflects related lessons learned about disability mainstreaming

Disability in people affected by leprosy : the role of impairment, activity, social participation, stigma and discrimination

VAN BRAKEL, W. H.
et al
2012

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"Leprosy-related disability is a challenge to public health, and social and rehabilitation services in endemic countries. Disability is more than a mere physical dysfunction, and includes activity limitations, stigma, discrimination, and social participation restrictions." This paper assesses the extent of disability and its determinants among persons with leprosy-related disabilities after release from multi drug treatment
Global Health Action, Vol 5

Guidelines to reduce stigma : guide 1|What is health-related stigma?

VAN BRAKEL, Wim
et al
2011

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"This guide is part of a series of four Guides to reduce stigma. The guides are for all managers, health and social workers and service staff who have to deal with stigma in leprosy and other health conditions. These Guides provide evidence-based and best-practice information from different disciplines, and recommendations for field workers on how to reduce stigma against and among affected persons and in the community. This first Guide provides basic information on stigma, its causes, manifestations, and effects"

Guidelines to reduce stigma : guide 2|How to assess health-related stigma

VOOREND, Carlijn
et al
2011

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"This guide is part of a series of four Guides to reduce stigma. The guides are for all managers, health and social workers and service staff who have to deal with stigma in leprosy and other health conditions. These Guides provide evidence-based and best-practice information from different disciplines, and recommendations for field workers on how to reduce stigma against and among affected persons and in the community...The second Guide describes when and how to assess stigma using qualitative and quantitative methods and instruments. It also explains how to use the instruments"

Guidelines to reduce stigma : guide 3|A roadmap to stigma reduction : an empowerment intervention

CROSS, Hugh
et al
2011

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"This guide is part of a series of four Guides to reduce stigma. The guides are for all managers, health and social workers and service staff who have to deal with stigma in leprosy and other health conditions. These Guides provide evidence-based and best-practice information from different disciplines, and recommendations for field workers on how to reduce stigma against and among affected persons and in the community...The third Guide provides recommendations on how to develop an approach for reducing stigma. Through the use of a roadmap, several steps are discussed for reducing stigma related to a particular health condition"

Guidelines to reduce stigma : guide 4|Counseling to reduce stigma

AUGUSTINE, Valsa
et al
2011

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"This guide is part of a series of four Guides to reduce stigma. The guides are for all managers, health and social workers and service staff who have to deal with stigma in leprosy and other health conditions. These Guides provide evidence-based and best-practice information from different disciplines, and recommendations for field workers on how to reduce stigma against and among affected persons and in the community...The fourth guide explains the use of counselling at a basic level in dealing with stigma. It provides an explanation on different techniques and approaches for counselling persons affected by stigma"

Lessons from the evolution of a CBR programme for people affected by leprosy in Northern Nigeria

EBENSO, Bassey
et al
December 2010

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"This paper reviews the 13-year evolution of the social economic activities in Northern Nigeria from a welfare-oriented to a community-centred programme for people affected by leprosy...Findings revealed that the transformation among other things, demanded formulation of new programme policies and guidelines; and staff training in CBR principles and practice. Findings also showed that adopting CBR principles and community development projects can stimulate improvements in living conditions,self-esteem and acceptance of people affected by leprosy into the community"
Leprosy Review Journal, Vol 81

Review of leprosy research evidence (2002-2009) and implications for current policy and practice

VAN BRAKEL, Wim
et al
September 2010

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"The ILEP Technical Commission (ITC) advises ILEP member associations on technical aspects of leprosy. A major review of research evidence in leprosy was published prior to the International Leprosy Congress in 2002. This current report updates that review based on research published between 2002-2009 and focuses on interventions for prevention, early diagnosis, chemotherapy, reactions, prevention of disability, stigma measurement and reduction and rehabilitation in leprosy"
Leprosy Review, Vol 81, Issue 3

Participation scale

VAN BRAKEL, W. H
April 2010

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This resource provides a manual and related scale to measure (social) participation for use in rehabilitation, stigma reduction and social integration programmes
Note: Contact the author or ILEP for further information

Hansen's disease recoverers as agents of change : a case study in Japan

HOSODA, Miwako
March 2010

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"This manuscript addresses the role and contribution of people affected by Hansen's disease (leprosy), especially through the efforts of Zen-Ryo-Kyo, the National Hansen's Disease Sanatoria Residents' Association, in changing laws and attitudes in Japan since the 1950's. Health social movements are discussed in the Japanese context and more broadly. An important contribution of this manuscript is the explanatory description of the activities of Zen-Ryo-Kyo in achieving change through addressing issues related to social stigma and discrimination"
Leprosy Review, Vol 81, Issue 1

Backbone principles of the CBR Guidelines and their application in the field of leprosy

VELEMA, Johan P
CORNIELJE, Huib
January 2010

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This paper summarises the draft CBR guidelines of WHO/ILO/Unicef into 3 principles: inclusion, empowerment, sustainability. Existing work with people affected by leprosy is reviewed in light of these CBR principles to formulate new strategies and make changes if necessary. The paper also presents experiences from the field with inclusion of leprosy-affected persons in multi-disability self-help groups and disabled people’s organisations
Asia Pacific Disability Rehabilitation Journal, Vol 21, No 1

Community-based rehabilitation : CBR guidelines|Supplementary booklet

WORLD HEALTH ORGANIZATION (WHO)
et al
2010

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"These community-based rehabilitation (CBR) guidelines are applicable to all disability groups. However, the need was identified for a supplementary booklet to highlight a number of issues which CBR programmes have historically overlooked, i.e. mental health problems, HIV/AIDS, leprosy and humanitarian crises...CBR is a strategy for community-based inclusive development which takes into account the principles of the Convention on the Rights of Persons with Disabilities, e.g. non-discrimination and the need to include all people with disabilities in development initiatives. Therefore, it is important that CBR programmes take steps to address issues which they have traditionally excluded, such as mental health problems, HIV/AIDS, leprosy and humanitarian crises. While these four issues have been chosen for inclusion in this booklet, CBR programmes are encouraged to think broadly about other issues (e.g. CBR and children, CBR and ageing) that are particularly relevant in their communities and which may be included in future editions of the guidelines"

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