Leprosy and disability

Leprosy is one of the oldest disabling diseases known to man. The leprosy bacillus - Mycobacterium leprae - uniquely infects the peripheral nervous system leading to nerve damage mainly in the face, hands and feet. In turn, this leads to the characteristic features of advanced leprosy known from the media or beggars on the streets of many endemic countries. These include blindness, facial disfigurement, loss of fingers and/or toes and chronic wounds due to an inability to feel pain and pressure. These physical features lead to difficulties in performing activities of daily life, such as fastening buttons, writing, picking up objects, and walking.

However, the most important impact of leprosy on those affected is social exclusion. Leprosy is still stigmatized in almost all leprosy-endemic countries. This, combined with any physical limitations in functioning, can have a profound negative effect on a person’s social participation. The stigma is such that often whole families are affected. Many of the manifestations of stigma are violations of human rights specified in the Convention on the Rights of Persons with Disabilities (CRPD).

A unique feature of leprosy-related disability is its preventable nature. If leprosy and its complications are detected and treated in time, almost all disability can be prevented. Hence the fact that prevention of disability constitutes a major component of leprosy services. This ranges from the treatment of immunological reactions to self-care of affected eyes, hands and feet. Social exclusion and other effects of stigma are addressed through social and economic rehabilitation, including facilitation of inclusive education, promoting equal employment opportunities, personal empowerment and self-advocacy. These activities are often implemented using a community-based rehabilitation (CBR) strategy. Because of the high level of stigma, promoting social inclusion often involves mainstreaming leprosy in the general field of disability, e.g. promoting that persons with leprosy-related disabilities become members of multi-disability DPOs, as well as mainstreaming in the general development field.

This key list has been produced in partnership with InfoLep and aims to raise awareness on the issues of Leprosy and disability providing access to key documents, tools and resources. We welcome your feedback: please send comments or suggested additions to sourceassistant@hi-uk.org.

InfoLep

Selected resources

Introductory resources

Infolep : leprosy information services

INFOLEP

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Infolep is a joint effort of ILEP and Infolep to support information needs in global leprosy control efforts by providing access to leprosy information resources on leprosy and related subjects, both on demand and on a pro-active basis. The information services can be accessed through: the physical library; online via the portal; by direct contact with the Information Officer; and by notification/awareness service by email and social media

WHO/ILEP technical guide on community-based rehabilitation and leprosy

WORLD HEALTH ORGANIZATION (WHO)
INTERANTIONAL FEDERATION OF ANTI-LEPROSY ASSOCIATIONS (ILEP)
2007

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This technical guide provides a reorientation and familiarisation tool for managers of leprosy projects and programmes. The analysis includes an outline of the broad objectives of CBR, the roles and tasks of programme managers, and the responsibilities of community workers. This resource would be useful for anyone with an interest in disability and development

Prevention of disability

Cost-effectiveness of interventions to prevent disability in leprosy : a systematic review

VAN VEEN, N. H
et al
2009

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"Prevention of disability (POD) is one of the key objectives of leprosy programmes. Recently, coverage and access have been identified as the priority issues in POD. Assessing the cost-effectiveness of POD interventions is highly relevant to understanding the barriers and opportunities to achieving universal coverage and access with limited resources. The purpose of this study was to systematically review the quality of existing cost-effectiveness evidence and discuss implications for future research and strategies to prevent disability in leprosy and other disabling conditions"
PLoS One, Vol 4, Issue 2

ILEP learning guide four : how to prevent disability in leprosy

CROSS, Hugh
MAHATO, Margaret
2006

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"This book is for all health workers who may have to help people who have nerve damage to their eyes, hands and feet. It will help them to encourage patients to develop a lifetime habit of caring for nerve-damaged parts. The content of this book complements the recommendations in the Operational Guidelines of the World Health Organization"
Note: This resource is available to download in three parts

Leprosy and the eye. Teaching set. Full text

INTERNATIONAL CENTRE FOR EYE HEALTH (ICEH)

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This resource contains a selection of the materials in the International Centre for Eye Health’s resources library on the management of eye disease in leprosy in low and middle income countries.

Prevention of blindness in leprosy

COURTRIGHT, Paul
LEWALLEN, Susan
Eds
2006

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This booklet is intended for use by all health workers and programme mangers involved in leprosy control and prevention of blindness
A workshop on ocular leprosy
Broxbourne, UK
3-5 July 2001

The relationship between detection delay and impairment in leprosy control : a comparison of patient cohorts from Bangladesh and Ethiopia

VAN VEEM, Natasja H J
MEIMA, Abraham
RICHARDUS, Jan H
December 2006

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"It is acknowledged that longer delays between first symptoms and diagnosis result in increased impairment in newly detected leprosy patients. However, it is unclear whether detection delay in relation to impairment can be used as a general or absolute performance indicator of leprosy control programmes. It is unknown whether similar delays always result in similar proportions of impairment. Therefore, the present study examined the quantitative relationship between delay and impairment in two different patient populations"
Leprosy Review, Vol 77, Issue 4

Stigma and human rights

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 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"

IDEA : international association for integration, dignity and economic advancement

IDEA

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"IDEA is the first international advocacy organization whose leadership is primarily made up of individuals who have personally faced the challenges of leprosy, also called Hansen’s disease...IDEA is dedicated to the principle that individuals whose lives have been challenged by leprosy, have the right to full and equal participation in society, including the right to equal justice, equal opportunity, and equal dignity without discrimination." This website provides information about campaigns, projects and related links to newsletters, resources and other resources

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

EBENSO, Bassey
et al
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 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 postive 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

Stigma research and action

STIGMA RESEARCH AND ACTION (SRA)

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"Stigma Research and Action (SRA) is an open access journal that provides a multi-disciplinary, international forum for the presentation of scholarly research pertaining to prejudice and discrimination that is caused by health conditions, disabilities, or membership in marginalized social or cultural groups." The Journal publishes original research articles (empirical, theoretical, and qualitative accounts), reviews, position papers, editorials, commentaries, and book reviews to inform research, policy, and practice
Published twice per year

The quality of life, mental health, and perceived stigma of leprosy patients in Bangladesh

TSUTSUMI, Atsuro
et al
March 2007

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"The present study aims to determine the quality of life (QOL) and general mental health of leprosy patients compared with the general population, and evaluate contributing factors such as socio-economic characteristics and perceived stigma. A total of 189 patients (160 outpatients, 29 inpatients) and 200 controls without leprosy or other chronic diseases were selected from Dhaka district, Bangladesh, using stratified random sampling"
Social Science Medicine Journal, Vol 64, Issue 12

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 and economic rehabilitation

Challenges in leprosy rehabilitation

THOMAS, Maya
THOMAS, MJ
2004

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"’Multiple drug Therapy' (MDT) has transformed the outcome of leprosy in people affected by it. Leprosy affected persons develop much less disfiguring disabilities after use of MDT. As a result leprosy services are now becoming integrated into general health services. When this integration becomes stronger, leprosy rehabilitation is also likely to adopt methods followed by general health services. Vertical, stand-alone services, based on single aetiology like leprosy, will require some adaptation to fit in with the environment of general health services. The authors speculate that changes in leprosy rehabilitation could make 'community based rehabilitation' (CBR) an important method for the vast majority of leprosy patients who need rehabilitation. This paper discusses some of the concerns regarding the suitability of CBR for leprosy rehabilitation"
Asia Pacific Disability Rehabilitation Journal, Vol 15, No 1

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

Medical rehabilitation

Surgical reconstruction and rehabilitation in leprosy and other neuropathies

SCHWARZ, R. J.
BRANDSMA, J. W.
Eds
2004

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"This book is designed for those with some training in reconstructive surgery for peripheral neuropathies, but who have not been exposed to all of the procedures presently available...In this field it is absolutely essential that the surgeon works closely with a therapist able to educate the patient following reconstructive surgical procedures. As such the book is also designed for therapists, with chapters covering the principles and techniques of pre- and postoperative therapy for neuropathic limbs. The book also contains sections on orthopaedic appliances and prosthesis, but only in sufficient detail to allow the surgeon to have a reasonable understanding of how to choose an appropriate orthosis/ prosthesis and what can be expected of the same"