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Disclosure of Disease among Women affected by Leprosy: A Qualitative Study

Ramasamy, Senthilkumar
Govindharaj, Pitchaimani
Kumar, Archana
Panneerselvam, Suganya
2020

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Purpose: Although leprosy is completely curable with multidrug therapy, it is unfortunate that the stigma attached to leprosy persists even today. Fear of social exclusion prevents disclosure of the disease to the family and community. This study aimed to evaluate the extent of disclosure of disease among women affected by leprosy in a tertiary referral hospital in Chhattisgarh State, India.

 

Method: A qualitative study was conducted with 57 women affected by leprosy who reported at a tertiary referral hospital in Champa, Chhattisgarh State. The respondents were 18 years of age or older, and had completed multidrug therapy for leprosy. They were asked whether the disclosure of disease had affected their interactions with family, neighbours and community members.

 

Results: Of the 57 women, 48 (84%) had disclosed their disease to their family, 17 (30%) to their neighbours and 13 (23%) to the community members. Thirty women (53%) reported that they experienced problems after revealing the ailment to their family, friends and neighbours. The qualitative analysis found that negative behaviour towards people affected by leprosy still persists in the community. Consequently, women affected by leprosy try to hide their disease due to fear of negative community reactions.

 

Conclusion: This study emphasises the need to spread awareness about the disease and its transmission, by educating the people affected by leprosy, their families and the community. This should be a continuous process in order to reduce or remove the stigma and discrimination against women affected by leprosy, in particular.

Activity Limitation of People Affected by Leprosy in an Endemic District in West Bengal, India

Govindharaj, Pitchaimani
Srinivasan, Sampathkumar
Darlong, Joydeepa
2020

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Purpose: This study aimed to assess the level of activity limitation, and the factors associated with it, among people affected by leprosy who were reporting at a leprosy referral centre of Purulia, in West Bengal state, India.

 

Method: A cross-sectional study was conducted among 358 individuals affected by leprosy. Persons recruited for this study were above 18 years of age, married, and had been diagnosed with leprosy for at least 1 year at the time of the interview. A semi-structured questionnaire was used to gather information about the respondents’ socio-economic and disease status. The Screening of Activity Limitation and Safety Awareness (SALSA) Scale was used to measure activity limitation.

 

Results: Of the 358 respondents, 59% were male, 60% were between 18 and 45 years of age, and 42% were illiterate. About 144 or 40% of the respondents had Grade 2 disability and 60% had disease duration of more than 3 years. There were 229 individuals (64%) who had no limitation in activities, 103 (29%) had mild limitation and 26 (7%) had moderate to severe limitation in activities. There is a significant association between gender, age, occupation, physical disability and disease duration with activity limitation.

 

Conclusion: It appears that limitations in activities among persons affected by leprosy are associated with being a woman, ahousewife, an aged person, and with longer disease duration. The physical disability was intrinsically associated with limitation in activities.

Global Leprosy Update 2019

WORLD HEALTH ORGANISATION (WHO)
September 2020

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A yearly update providing data from 160 countries around the world on the state of leprosy. The data will be useful to policy-makers, planners and researchers. 

The main leprosy indicators are now all based on a denominator of 1 million population. The key indicators are the case detection rate, the disability rate and the case detection rate in children.

The sub-title, “Time to step-up prevention initiatives” is the main focus of the Editorial comment on the last 3 pages, emphasizing the Triple Zero targets

 

Weekly Epidemiological Record  4 SEPTEMBER 2020, 95th YEAR No 36, 2020, 95, 417–440

 

What do we know about how to support mental health and wellbeing during the COVID-19 pandemic from past infectious disease epidemics?

QURESH, Onaiza
SCHERER, Nathaniel
July 2020

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The question and the problem:

Symptoms of mental ill-health are common during widespread outbreak of an infectious disease, with high rates of depression, anxiety and post-traumatic stress disorder (PTSD) reported during recent epidemics, such as the recent Ebola crises and SARS-CoV-1. Elevated symptoms of mental ill-health are not limited to patients only, and are seen in healthcare workers, family members and indeed more widely across the general population. Early evidence coming from the COVID-19 pandemic demonstrates high rates of mental ill-health and mental health service provision is needed. This evidence brief summarises evidence on mental health support during COVID-19 and other recent pandemics, informing policy and practice during this crisis.

COVID-19 and Disability; Exploring a new innovation landscape

HOLLOWAY, Catherine
OLDFREY, Ben
CHIIRA, Bernard
KETT, Maria
July 2020

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This webinar explored the impact of, and learnings from COVID-19 on Disability Innovation. We heard from those shifting their work in response to the pandemic. We also looked at how learnings from Assistive Technology (AT) are being applied to this unprecedented global environment.

Finally, there was an overview of how knowledge was captured during Ebola can support the response to this latest threat

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

Guidance for including people with disabilities in responses to the COVID-19 pandemic. Guidance for development partners

PREGEL, Andrea
LE FANU, Guy
May 2020

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Practical guidance is provided for development partners to develop disability inclusive responses to the COVID-19 pandemic during the emergency phase of the COVID19 pandemic. In the immediate- and long-term response to the pandemic, it is vital that all development partners take steps to strengthen health systems that are disability-inclusive.

 

Topics include: intersectionality; assessing gaps and needs; engaging people with disabilities and DPO's; accessible and inclusive communications; healthcare and essential services; livelihoods and social protection; education; independent living and housing; and evidence generation.

Voices of people with disabilities during the COVID19 outbreak

INTERNATIONAL DISABILITY ALLIANCE (IDA)
May 2020

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A collection of stories from people with various disabilities across the globe sharing their experiences with the COVID-19 outbreak and pandemic risk reduction strategies implemented by their governments. Some stories are written by IDA and some are external.

Examples are:

  • How absence of transport can be fatal: A Story from Uganda
  • In Uganda, a Deaf man loses his leg after being shot during curfew
  • Voices of Mexico: Disability and COVID-19 | Voces de Mexico: Discapacidad y COVID-19
  • COVID-19 in Mexico: the experience of deafblind children told by their mothers (Espanōl)
  • Reaching Persons with Deafblindness
  • COVID-19 and The Forgotten People (Indonesia)
  • When accessible information is far from a reality: Zimbabwe during COVID-19
  • The experience of a blind woman in Kenya under COVID-19 outbreak
  • Being a single mother of two persons with disabilities under COVID-19 (South Africa)
  • Autistic students in South Africa: how has their life changed?
  • The Story of Rose Rokiatou: COVID-19 Pandemic and Financial Vulnerability of Persons with Disability in Mali
  • COVID-19 in Romania: Life-threatening situations reported
  • COVID-19 in Nepal: What are the challenges for indigenous persons with disabilities?
  • COVID-19 in India : Technology can be your best friend or worst enemy

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

Persons with disabilities must not bear the brunt of COVID-19 aftermath: Lessons from Ebola in Liberia (SDDirect COVID-19 pandemic blog series)

CAREW, Mark
May 2020

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The importance of ensuring persons with disabilities are not excluded as part of COVID-19 responses is explored.
Lessons learnt from the 2014-2017 Ebola outbreak in Liberia are discussed highlighting access to information, access to healthcare and the social impact. Research in Liberia combined surveys and interviews with people from households with a disabled person as well as those without, and included responses from 560 persons living in areas that had ‘many’ or ‘few’ cases of Ebola.

Management of leprosy reactions and prevention of disability

WORLD HEALTH ORGANISATION (WHO), REGIONAL OFFICE FOR SOUTH-EAST ASIA
May 2020

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The World Health Organisation has issued new Technical Guidance on management of leprosy reactions and prevention of disability. The guidance originated in an informal consultation in late 2018 where numerous ILEP technical specialists were involved.

The Technical Guidance provides updated and detailed guidance on critically important actions to prevent disability. Main chapters include:

  • Distinction between the different types of leprosy reaction – how they present, how they are managed and the potential consequences if not managed well
  • How to assess nerve function and undertake sensory testing and voluntary muscle testing, so as to recognise nerve damage as early as possible
  • How to recognise early, and correctly treat, leprosy reactions and neuritis, so as to avoid irreversible nerve damage and the resulting disability. There are separate chapters for the medical management and for front-line health workers, including a useful step-by-step guide

A feature that users may find especially useful is a set of flow-charts, or algorithms, towards the end of the publication, which are a visual guide to making the right clinical decisions.

#COVID-19 ASL

CENTRE FOR DISEASE CONTROL AND PREVENTION (CDC)
April 2020

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A series of 11 short videos in American sign language giving information on various aspects of COVID-19

COVID-19: Older people's stories

HELPAGE INTERNATIONAL
April 2020

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HelpAge International is working with older people and network members around the world to respond to the threat of the coronavirus (COVID-19) pandemic.

The experiences of older people and how they are responding to the spread of the virus are available.

 

Guidance available includes: COVID-19 in general; for care homes; administering pensions; collecting pensions; for communities and older persons associations.

 

Briefing notes include: older people and COVID-19 in low- and middle-income countries and humanitarian settings; and key messages for decision makers. 

 

Many resources are available with some also available in Arabic, Russian and Spanish. 

Applying humanitarian standards to fight COVID-19

SPHERE
April 2020

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Contents of this short brief include:

  • Sphere Standards
  • The Core Humanitarian Standard
  • The Humanitarian Standards Partnership
  • Cash Assistance
  • Inclusion of older people and people with disabilities
  • Education in Emergencies
  • Child Protection
  • Markets and Economic Recovery 

Coronavirus disease (COVID-19) outbreak. Video gallery

WORLD HEALTH ORGANISATION (WHO). REGIONAL OFFICE FOR EUROPE
April 2020

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Several short videos concerning COVID-19 are available including:

  • Seven steps to prevent the spread of the virus
  • How to protect yourself against COVID-19
  • How is the new coronavirus affecting people who get it?
  • What is the correct way to wear and dispose of masks?
  • Why is it recommended to avoid close contact with anyone who has fever and cough?
  • Q&A on Coronavirus - COVID-19 in the workplace - WHO's Dr Rosamund Lewis

LEARNING MUST GO ON: Recommendations for keeping children safe and learning, during and after the COVID-19 crisis

April 2020

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This brief highlights some of the potential impacts of school closures (associated with the impact on the COVID-19 on children) with a focus on the most marginalised, including those already living in crisis and conflict contexts. It provides recommendations for governments and donors, together with partners, to ensure that safe, quality and inclusive learning reaches all children and that education systems are strengthened ready for the return to school

IDDC Inclusive Education Task Group response to COVID-19

April 2020

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Many countries in the world are adjusting to the impact of the COVID-19 outbreak. It is clear that in addition to the impact on health, this outbreak will have a long-term significant impact on the education of children and young people globally. Already, nearly 90% of children and young people are experiencing disruption to their education and 185 countries have implemented country-wide school closures. Children with disabilities were amongst the most likely to be excluded from education, with 50% of children with disabilities in low- and middle-income countries out of school before the pandemic. Additional, specific challenges in times of school closures are reported and a call is made to governments.

How to Cope With Being Short Of Breath

April 2020

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People with lung problems often feel short of breath. Many daily tasks can make you breathless, such as walking, getting dressed or doing jobs around the house. Being breathless can make you panic or feel frightened. When you learn how to control your breathing these feelings will not trouble you as much and you will be able to do more. When you are breathless, do not panic. Your breathing will settle.
 

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