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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

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 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"

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

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"

Understanding and challenging TB stigma : toolkit for action | Introduction to TB and stigma | More understanding and less fear about TB

KIDD, Ross
et al
March 2009

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"The module was written by and for trainers. It has been designed to help trainers plan and organise participatory educational sessions with community leaders or organised groups to raise awareness and promote practical action to challenge HIV and TB stigma and discrimination." It can be used as a stand alone resource or in conjunction with the modules on understanding and challenging HIV stigma

Evidence for the effectiveness of rehabilitation-in-the-community programmes

VELEMA, Johan P
EBENSO, Bassey
FUZIKAWA, Priscila L
March 2008

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"The present literature review identified 29 reports from 22 countries in Asia, Africa and Central America reporting on the outcomes of rehabilitation-in-the-community programmes in low and middle income countries published between 1987 and 2007. Interventions included home visits by trained community workers who taught disabled persons skills to carry out activities of daily living, encouraged disabled children to go to school, helped find employment or an income generating activity, often involving vocational training and/or micro-credit. Many programmes had a component of influencing community attitudes towards disabled persons. The information collected shows that such programmes were effective in that they increased independence, mobility and communication skills of disabled persons, helped parents of disabled children to cope better and increased the number of disabled children attending schools. Economic interventions effectively increased the income of disabled persons although they rarely made them financially independent. CBR activities result in social processes that change the way community members view persons with disabilities, increase their level of acceptance and social inclusion and mobilise resources to meet their needs"
Leprosy Review, Vol 79, Issue 1

Impact of socio-economic rehabilitation on leprosy stigma in Northern Nigeria: findings of a retrospective study

EBENSO, Bassey
FASHONA, Aminat
AYUBA, Mainas
IDAH, Mike
ADEYEMI, Gbemiga
S-FADA, Shehu
2007

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This study explored the perceptions of people affected by leprosy regarding impact of socio-economic rehabilitation (SER) on stigma-reduction. The study combined a quantitative questionnaire (the P-scale) with semi-structured interviews of 20 individual SER participants, five focus group discussions and 10 key informant interviews. The P-scale results showed four men suffered significant participation restrictions (scores of >12 points) in finding work and in social integration. The narratives of SER participants, focus groups and key informants showed that SER improved self-esteem, financial independence, acquisition of new skills, and access to public institutions. The authors speculate that through the pathway of improvements in economic and living conditions, SER is beginning to influence the process of social interaction, resulting in positive attitudinal change towards SER participants. The subjective opinions of interviewees suggest that improved self-esteem, positive family and community support for SER participants and increasing participation in community activities are indications of stigma-reduction.

 

Asia Pacific Disability Rehabilitation Journal, Vol 18, No 2

Civil society perspectives on TB/AIDS : highlights from a joint initiative to promote community-led advocacy

OPEN SOCIETY INSTITUTE
TREATMENT ACTION GROUP
2006

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This publication presents six case studies of community-led advocacy activities, aimed at enhancing the capacity of the community to participate in the design, implementation and evaluation of TB/HIV programmes. The HIV epidemic has significantly contributed to the rise of TB incidence, but disease control programmes and policies are generally designed to be implemented independently, with limited resources often allocated to TB projects. The case studies outline some success stories of an integrated approach to TB and HIV, the TB/HIV Advocacy Grants Project, and highlight examples of effective community mobilisation and inclusion of people with HIV. This is a valuable resource for policy makers, organisations and practitioners working in HIV and tuberculosis

Advocacy, communication and social mobilization to stop TB : a 10-year framework for action

ASCM SUBGROUP AT COUNTRY LEVEL
2006

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This workplan focuses on how advocacy, communication and social mobilitation can contribute to TB control policies and programmes. In particular, it aims to: provide guidance to national initiatives designed to implement the Global Plan TB 2006-2025; foster advocacy, communication and social mobilization capacity (ACSM); and encourage behavioural and social changes, tailored to specific local context, that will result in increased TB case detection and cure rates. A successful strategy will need to: develop national and sub-national ACSM capacity; build inclusion of patients and communities affected; ensure political commitment and accountability; build country-level ACSM partnerships; learn and build on good ACSM practices. This is key tool for policy makers, at national and local level, health authorities and organisations working with TB and health communication

Enhancing research uptake through communication, networking and capacity development

DUNN, Alison
2004

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This brief paper describes the research methodology employed by the Malaria Knowledge Programme, and key lessons learned. The programme aimed to enhance the impact of its work through strengthening information and communication flows, involving Southern researchers and institutions and creating international networks for the improvement of research communication throughout its work. Using examples, this paper illustrates how the programme engaged with dynamics of research, policy making and practice, in accordance with DFID recommendations

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