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

Expand view

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

Expand view

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

A clinical and radiological follow-up study in leprosy patients with asymptomatic neuropathic feet

SLIM, FJ
et al
June 2008

Expand view

"An MRI study done in 2000 on 10 leprosy patients with neuropathic feet, without clinical complications such as ulcerations, osteomyelitis or Charcot deformities revealed abnormalities in nine patients, with degradation, interruption of subcutaneous fat and effusion/synovitis, all located in the first metatarsophalangeal (MTP) region. Since these MRI abnormalities may precede clinical complications of the foot, a follow-up study was performed. A new evaluation was based on a clinical examination and an MRI of the same patients who participated in the initial study...MRI findings of interruption and infiltration of the subcutaneous fat in leprosy patients with uncomplicated neuropathic feet do not necessarily have any clinical implication for the development of future foot problems"
Leprosy Review, Vol 79, Issue 2

An intensive self care training programme reduces admissions for the treatment of plantar ulcers

CROSS, Hugh,
NEWCOMBE, Lesley
September 2001

Expand view

"This paper describes, in detail, an intensive 14 day Self Care Training Programme that is conducted at Lalgadh Leprosy Services Centre in Nepal. An evaluation of the programme was undertaken in which hospital admission for infected plantar ulceration was the outcome measure. This paper presents an overview of the issues related to impairment, a description of the Self Care Training Programme, an analysis of the evaluation results and a discussion of the findings"
Leprosy Review, Vol 72, Issue 3

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

VAN VEEN, N. H
et al
2009

Expand view

"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

Expand view

"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

INTERNATIONAL CENTRE FOR EYE HEALTH (ICEH)

Expand view

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. Related publications, Community Eye Health Journal articles and research articles are provided

Monitoring motor nerve function in leprosy patients

BRANDSMA, JW
September 2000

Expand view

"Manual muscle strength testing has an important function in the management of leprosy patients. Its importance was first recognized in the 1960s, especially when following patients who were started on steroid treatment to monitor the nerve function and the effect of treatment. In those days, and still in many centres today, many or all muscles were tested that are innervated by the nerves that can be at risk in leprosy. The author argues that not all muscles innervated by the nerves at risk need to be tested and also that many muscles cannot be tested in isolation. A muscle charting form is presented which is suitable for screening purposes, and that also allows for more detail when motor function is impaired"
Leprosy Review, Vol 71, Issue 3

Prevention of blindness in leprosy

COURTRIGHT, Paul,
LEWALLEN, Susan
Eds
2006

Expand view

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

Risk factors for participation restriction in leprosy and development of a screening tool to identify individuals at risk

NICHOLLS, PG
et al
December 2005

Expand view

This paper explores risk factors for participation restrictions experienced by people affected by leprosy. The objective was to develop a screening tool to identify individuals at risk. An initial round of qualitative fieldwork in eight centres in Nepal, India and Brazil identified 35 potential risk factors for participation restriction. This was further assessed through quantitative fieldwork in six centres in India and Brazil. In all, 264 individuals receiving leprosy treatment or rehabilitation services made a retrospective assessment of their status at time of diagnosis. Their level of participation restriction was assessed using the Participation Scale, and regression analysis identified risk factors for participation restriction. Four consolidated items were identified as the basis for a simple screening tool to identify individuals at risk: physical impact of leprosy, an emotional response to the diagnosis, female gender and having little or no education. Such a tool may form the basis for a screening and referral procedure to identify newly diagnosed individuals at risk of participation restrictions and the need of actions that may prevent such restrictions
Leprosy Review, Vol 76, Issue 4

The experience of self-care groups with people : ALERT, Ethiopia

BENBOW, Catherine,
TAMIRU, Teferra
September 2001

Expand view

This paper describes the development of self-care groups in Ethiopia by ALERT, and the successes and failures experienced in the process. The groups were started in 1995 in response to two main problems, the increasing number of people dependent on ALERT to heal their wounds despite years of health education, and the limited financial resources of ALERT for wound healing supplies
Leprosy Review, Vol 72, Issue 3

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

Expand view

"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

WHO disability grading : operational definitions

BRANDSMA, J Wim,
VAN BRAKELl, Wim H
2003

Expand view

"The paper discusses the WHO grading in the light of its dual use: as an indicator for early case detection and as an indicator for change in impairments. The paper presents operational definitions for the grading options"
Leprosy Review, Vol 74, 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

Expand view

"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

Expand view

"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

Expand view

"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

Expand view

"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

Expand view

"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

Expand view

"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

IDEA : international association for integration, dignity and economic advancement

IDEA

Expand view

"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

Expand view

"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

Participation scale

VAN BRAKEL, W. H
April 2010

Expand view

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

STEP : an intervention to address the issue of stigma related to leprosy in southern Nepal

CROSS, Hugh,
CHOUDHARY, Ramesh
December 2005

Expand view

"This paper focuses primarily on the extent to which a Stigma Elimination Programme (STEP) affected the social participation of people affected by leprosy in southern Nepal. The Participation Scale (popularly known as The P Scale) was applied to compare leprosy affected people who participated in STEP groups with a control group comprising leprosy affected people who lived in villages where STEP had not been implemented"
Leprosy Review, Vol 76, Issue 4

Stigma research and action

STIGMA RESEARCH AND ACTION (SRA)

Expand view

"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

Expand view

"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

Expand view

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

Expand view

"’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

Community-based rehabilitation : CBR guidelines|Supplementary booklet

WORLD HEALTH ORGANIZATION (WHO)
et al
2010

Expand view

"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"

Disability, CBR and inclusive development (DCID) [formerly Asia Pacific disability rehabilitation journal]

THOMAS, Maya
Ed

Expand view

"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

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

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

Expand view

"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

Funding for self-employment of people with disabilities : grants, loans, revolving funds or linkage with microfinance programmes

DE KLERK, Ton
March 2008

Expand view

"In 2005, Handicap International commissioned a study on the practices of funding for self-employment activities of people with disabilities (PWD), with a special focus on access to microfinance. The overall goal of the study was to produce a framework document highlighting good practices, strategies, tools and operational methods that guarantee the efficiency and sustainability of self-employment projects for PWDs. The first phase of the study consisted of a literature review and a worldwide survey. Through this first phase the research team identified the most innovative programmes for further analysis through field visits. In the second phase field visits were conducted in Afghanistan, Bangladesh, Ethiopia, India, Kenya, Nicaragua and Uganda, while regional workshops were organised in Dhaka and Nairobi. Phase three involved consolidation and analysis of the information and finally drafting of the framework document. This paper summarises the findings and good practices as presented in the framework document, based on the results of the literature review, the survey and the field research. It is not a scientific paper, i.e. it doesn't contain a discussion of the literature reviewed or systematic reference to sources, the same as the document on which it is based, as it is primarily meant for practitioners"
Leprosy Review, Vol 79, Issue 1

Global trends in disability rehabilitation and their implications for leprosy programmes

THOMAS, Maya,
THOMAS, Maliakal Joseph
March 2008

Expand view

This article explores the global trends in disability rehabilitation and the implications for leprosy programmes. It provides a brief summary the Biwako Millennium Framework of the Asia and Pacific decade to gain a better understanding of current issues and the implications for leprosy rehabilitation programmes
Leprosy Review, Vol 79, Issue 1

Inclusion of persons affected by leprosy in CBR

CORNIELJE, Huib
et al
March 2008

Expand view

This article presents reflections of community-based rehabilitation (CBR) professionals who attended a workshop prior to the 17th International Leprosy Congress. The professionals discussed the need to make their rehabilitation programmes, often focussed on serving the needs of persons affected by leprosy, more inclusive for other marginalised groups, in particular persons disabled through non-leprosy causes. They also reflected on the need to promote the self-organisation of people affected by leprosy and their inclusion of them also in general Disabled People’s Organisations (DPOs) either individually or through their organisations
Leprosy Review, Vol 79, Issue 1

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

VAN BRAKEL, Wim
et al
September 2010

Expand view

"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

Medical rehabilitation

Re-enablement of the neurologically impaired hand - 2 : surgical correction|Report of a surgical workshop held at Green Pastures Hospital and Rehabilitation Centre, November 2004, Pokhara, Nepal

SCHWARZ, RJ,
BRANDSMA, JW
December 2006

Expand view

"In this paper, the common surgical procedures (of neuropathic conditions of the hand) are discussed. The procedures for uncomplicated neurologically impaired hand with paralysis of ulnar, median or radial nerve paralysis will be discussed first, followed by surgical interventions for the impairments that may have developed secondary to the paralysis or the surgery. Recommendations for best practice and further research will be given"
Leprosy Review, Vol 77, Issue 4

Surgical reconstruction and rehabilitation in leprosy and other neuropathies

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

Expand view

"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"