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Persons affected by leprosy and the COVID-19 global health crisis

GLOBAL PARTNERSHIP FOR ZERO LEPROSY (GPZL) WORKING GROUP 2
June 2020

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The COVID-19 pandemic has deeply impacted leprosy control and prevention and the lives of persons affected by the disease.

Seven consultative calls were carried out with persons affected individuals and organizations from April – May 2020, speaking with over 100 individuals from more than 25 organizations from 22 different countries. The first six calls were conducted based on geographical region, including: Latin America, Africa, Asia, and the Pacific. The final call was for women affected by leprosy.

The following issues were raised on a consistent basis, across geographies, as major concerns for persons affected during the COVID-19 pandemic:

  • Access to health care
  • Access to fundamental goods
  • Access to government support
  • Access to stable livelihoods
  • Access to information about COVID-19
  • Intersecting vulnerabilities

Disability progression among leprosy patients released from treatment: a survival analysis

dos Santos, Aleksandra Rosento
et al
May 2020

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Leprosy can be cured, but physical disability (PD) as a result of the infection can progress in the post-release from treatment phase. This study evaluated the likelihood of, and factors associated with, the progression of the PD grade post-release from treatment among leprosy patients treated in Cáceres-MT, Brazil in the period 2000 to 2017.

A retrospective cohort study and survival analysis were performed in the hyperendemic municipality of Cáceres in the state of Mato Grosso. The study population consisted of newly diagnosed leprosy patients released from treatment between January 1, 2000 and December 31, 2017.

 

Infect Dis Poverty 9, 53 (2020)

https://doi.org/10.1186/s40249-020-00669-4

Advice about leprosy and COVID-19

ILEP TECHNICAL COMMISSION (ITC)
April 2020

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Brief advice is given in relation to COVID-19 concerning general issues, diagnosis and clinical management of leprosy patients, public health aspects of leprosy in the COVID-19 pandemic and services for persons living with disabilities and/or psychosocial consequences of leprosy

The Health Stigma and Discrimination Framework: a global, crosscutting framework to inform research, intervention development, and policy on health-related stigmas

STANGL, Anne
et al
February 2019

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A Health Stigma and Discrimination Framework is proposed, which is a global, crosscutting framework based on theory, research, and practice. It's application to a range of health conditions, including leprosy, epilepsy, mental health, cancer, HIV, and obesity/overweight is demonstrated. How stigma is related to race, gender, sexual orientation, class, and occupation intersects with health-related stigmas is discussed. How the framework can be used to enhance research, programming, and policy efforts is examined. 

 

BMC Med 17, 31 (2019)

https://doi.org/10.1186/s12916-019-1271-3

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:

 

Community knowledge, attitude, and perceived stigma of leprosy amongst community members living in Dhanusha and Parsa districts of Southern Central Nepal

SINGH, Rakesh
SINGH, Babita
MAHATO, Sharika
January 2019

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The main objective of this study was to assess the knowledge, attitude and stigma of leprosy amongst the community members living in Dhanusha and Parsa districts of Southern Central Nepal. A total of 423 individuals were interviewed using a structured questionnaire in Dhanusha and Parsa districts. Data was analyzed using both descriptive (frequency, percentage, median) and statistical inferences.

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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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. 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

 

https://doi.org/10.5463/dcid.v30i2.791

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

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.

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.

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

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 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"

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

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