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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.

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.

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 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:

 

Access to Social Organisations, Utilisation of Civil Facilities and Participation in Empowerment Groups by People with Disabilities in Maharashtra, India

GOVINDASAMY, Karthikeyan
DHONDGE, Suresh
DUTTA, Ambarish
MENDIS, Tina
2019

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Purpose: This survey aimed to assess the baseline level of access to social institutions, utilisation of civil facilities and participation in empowerment schemes by people with disabilities in Amravati district of Maharashtra State, India.

 

Method: Sixty villages from two blocks in Amravati district were randomly selected for the survey. From these villages, 522 households were sampled and 3056 individuals were surveyed. Interviews were conducted with 590 individuals with disability from among the surveyed population. The structured interview schedule consisted of demographic data, access to social organisations, utilisation of civil services, and participation in empowerment schemes. 

 

Results: Locomotor disability was the most prevalent (44.6%) type of disability in the study area. Disabilities were more often present among male adolescents and young adults than among the older population and females. Over 50% of the study participants had no occupation (including children and students) and had not been to school. Only 48% had achieved secondary education and more. The proportion of disability among people belonging to Scheduled Castes and Scheduled Tribes was considerably higher than among the general population. Access to social institutions was less than 50% for most of the items, and was even lower among females. Except for the ration card and Aadhar card, civil services were generally under-utilised by people with disability. Only 3.2% of the participants were members of self-help groups, and not a single person was a member of the Disabled People’s Organisation.

 

Conclusions:  In the study area access to social institutions, utilisation of civil services and participation in empowerment schemes was very low.

 

Limitations: Data, including general socio-demographic, access and utility data, was not collected for the general population but was limited to people with disabilities. This restricted the scope for comparison between people with and without disabilities.

 

 

Disability, CBR and Inclusive Development, Vol 30, No 1 (2019)

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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Purpose: In general, 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.

 

Method: 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.

 

Results: Of the 108 clients registered during the study period, 90 completed the full course of MDT and were included in the analysis. The majority of these 90 clients or 83% were multibacillary and 23% had Grade 2 disability at the time of diagnosis. At the end of MDT with steroids therapy for reaction and neuritis, the proportion of clients with no participation restriction increased from 76% to 93%. Clients with visible impairments had more restriction as compared to those with no deformity or no visible deformity, before and after MDT. Among those with visible impairments, 78% had mild to severe restriction before MDT and it declined to 26% on completion of treatment.

 

Conclusion: Presence of Grade 2 disability at the time of diagnosis was significantly associated with participation restriction. MDT and steroid therapy for management of reaction and/or neuritis improves the participation level of leprosy-affected clients, suggesting that early detection and appropriate management would reduce their risk of participation restriction.

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

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  

Fatigue and Functional Capacity in Persons with Post-Polio Syndrome: Short-term Effects of Exercise and Lifestyle Modification Compared to Lifestyle Modification Alone

SHARMA, S S
SHETH, M S
VYAS, N J
2014

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Purpose: Post-polio Syndrome (PPS) affects polio survivors many years after the initial attack, and causes new musculoskeletal symptoms and decline in physical function. This study aims to compare the effect of exercise and lifestyle modification versus lifestyle modification alone, on fatigue and functional capacity in persons with PPS.

 

Method: An experimental study was conducted at the physiotherapy department of VS Hospital in Ahmedabad. As per the criteria of Halstead (1985), 21 PPS subjects who were between 18 and 65 years of age, and able to walk indoors and outdoors, with or without assistive aids, were included. They were randomly allocated into 3 groups using the envelope method. Those with physician- diagnosed respiratory or cardiac insufficiency, disabling co-morbidity which interfered with the intervention programme or influenced the outcome, and those unable to cooperate due to cognitive impairment or use of any psychotropic drugs, were excluded. Fatigue and functional capacity were measured using Fatigue Severity Scale (FSS) and 2-minute walk distance, respectively. Physical and psychological functions were assessed using Patient Reported Outcome Measurement Information System (PROMIS) questionnaire and Patient Health Questionnaire (PHQ-9) respectively. Intervention was given for 5 days a week, over 4 weeks. Group A received exercise and lifestyle modification, group B received lifestyle modification alone and group C continued their usual routine for 1 month.

 

Results: There was a significant difference in fatigue and functional capacity within groups A and B, with group A showing better reduction in fatigue than groups B or C. Physical function improved only within group A, and a significant difference was seen compared to groups B and C. Psychological function showed no difference within or between the groups.

 

Conclusion: There was improvement in fatigue, functional capacity and physical function in PPS subjects after 4 weeks of exercise and lifestyle modification. Lifestyle modifications alone for 4 weeks improved fatigue and functional capacity in PPS subjects. There is significant reduction in fatigue and improvement in functional capacity when lifestyle modification advice is given along with exercise.

Presentation and Impact of Pain in Persons with Post-Polio Syndrome: A Cross-sectional Survey Study

SHETH, M S
GHOGHARI, B
VYAS, N J
2014

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Purpose: It is a common and well‐recognised phenomenon that functional deterioration occurs many years after people are affected by poliomyelitis infection. This study aims to determine the presentation of pain in subjects with post-polio syndrome (PPS) and also the correlation between severity of pain and interference in activities of daily living (ADL).

 

Method: A cross-sectional survey was conducted among 72 persons with PPS in Gujarat state in India. Each one was given a self-administered questionnaire which included an 11‐point Numeric pain rating scale (NRS) for intensity of pain, questions about site, duration and diurnal variation of pain, and an 11‐point Numeric pain rating scale for pain interference.

 

Results: The study showed that 17 persons (24%) had only joint pain, 28 (39%) had only muscular pain and 27 (37%) had both joint as well as muscular pain. The highest number of subjects or 34 persons (47%) had knee pain, followed by 24 (33%) with shoulder pain, 21% with hip and 19% with low back pain. Muscle pain was maximum in arm musculature, as reported by 33 persons (45%), followed by pain in leg and foot muscles among 25 (36%) and 17 (23%) persons, respectively. Maximum number of subjects or 31% had pain while working which was relieved by rest, while 28 % had pain which continued all day. 43% experienced more pain in winter while 57% had no seasonal variation in pain. 30 persons (42%) had severe pain, 26 had moderate pain and only 16 had mild pain. Mean pain intensity was 5.88 ±1.52. Interference in ADL on NRS was 4.72 ±2.70. Interference in ADL and pain intensity were found to be positively correlated with Pearson’s co-efficient r=0.6295(p<0.0001).

 

Conclusion: The majority of those who had recovered from polio experienced increased or new symptoms and problems in ADL, muscle pain, joint pain, and difficulties in walking.

Knowledge, Beliefs and Perception of Leprosy

SINGH, S
SINHA, A K
BANERJEE, B
JASWAL, N
2013

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Purpose: For intervention to be effective, it is essential that the knowledge, beliefs and perception of a specific social group are taken into account. This is particularly true of leprosy where the problems of social stigma and ostracism are more prominent than the disease itself. There are many misconceptions about the cause, methods of transmission, and treatment.

 

The main objectives of the study were to examine the socio-demographic profile of persons with leprosy and to explore their knowledge, beliefs and perception about the disease and its initial symptoms, within a specific socio-cultural milieu.

 

Method: Semi-structured interviews were held with a persons with leprosy at various clinics and care-homes for affected persons in and around Chandigarh, India. Those who had completed their treatment and those who were still undergoing treatment were included in the study. Data collection was done through case studies and in-depth interviews.

 

Results: The name of the disease varied across different geo-cultural zones. Many respondents who were afflicted with only red patches and had no ulcers, believed that they suffered from a skin disease which would turn into leprosy if proper medication was not received. The perception of 64.9 % of the respondents was that leprosy resulted from supernatural causes like God’s punishment, karma, and sin.

 

Conclusion: There is a need to educate persons with leprosy and their families about the etiology of the disease.

Bridging the gaps between research, policy and practice in low- and middle-income countries : a survey of health care providers

GUINDON, G Emmanuel
et al
May 2010

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This article discusses the results of a survey to examine the gaps that continue to exist between research based evidence and clinical practice. Health care providers in 10 low- and middle-income countries were surveyed about their use of research-based evidence and examined factors that may facilitate or impede such use. The conclusion is that locally conducted or published research plays an important role in changing the professional practice of health care providers surveyed in low- and middle-income countries and increased investments in local research, or at least in locally adapted publications of research-based evidence from other settings, are therefore needed. Although access to the Internet was viewed as a significant factor in whether research-based evidence led to concrete changes in practice, few respondents reported having easy access to the Internet. Therefore, efforts to improve Internet access in clinical settings need to be accelerate

Bridging the gaps between research, policy and practice in low- and middle-income countries a survey of researchers

LAVIS, John N
et al
May 2010

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This article describes the findings from a study which examined efforts to bridge the gaps between research, policy and practice in 10 low- and middle-income countries in which researchers conducting research in one of four clinical areas relevant to the Millennium Development Goals: prevention of malaria (Ghana, Laos, Senegal and Tanzania), care of women seeking contraception (China, Kazakhstan, Laos and Mexico), care of children with diarrhoea (Ghana, India, Pakistan and Senegal) and care of patients with tuberculosis (China, India, Iran and Mexico) were surveyed

Together now

INDIA HIV/AIDS ALLIANCE
April 2009

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Together Now’ is Alliance India's periodical newsletter. This issue focuses on psychosocial support in relation to support of people affected by HIV and AIDS including interventions that assist children and families to cope

The magic bus : a flipbook on the basics of HIV and AIDS

INDIA HIV/AIDS ALLIANCE
March 2009

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This is a flipbook designed as an educational aid for carers and counsellers to educate children between the ages of eight and 14 on the basic facts of HIV and AIDS and how they can protect themselves against the disease. The book is colourful, fun and easy to follow and while it has been developed in an Indian context, can be used in any environment where HIV and AIDS education is needed

Community-based surveillance of antimicrobial use and resistance in resource-constrained settings|Report on five pilot projects

HOLLOWAY, Kathleen A
2009

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This document describes five pilot surveillance projects that were set up in India (three sites) and South Africa (two sites) with the aim of developing a model for undertaking integrated community-based surveillance in resource-constrained settings and generating baseline data. The methodology used in each area aimed to collect antimicrobial resistance (AMR) and use data from the same geographical area over time, but was modified to suit the particular characteristics of each site

Best practices in the socio-economic rehabilitation of persons affected by leprosy and other marginalised people in their communities: findings from nine evaluations in Bangladesh, India and Africa

VELEEMA, Johan P
2008

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This paper presents an overview of findings from the formal evaluation of 9 socio-economic rehabilitation programmes (SER), in 4 countries in Africa, in Bangladesh and in India from 2002-2005. Bringing together the recommendations resulted in a description of best practices in the implementation of socio-economic rehabilitation programmes, derived from actual experiences in different contexts.

All the 9 programmes focused on supporting individual leprosy-affected beneficiaries or their families. Four projects also supported other marginalised clients. The usual interventions were micro-credit, housing and sponsoring of education for the children.

The recommendations touched upon each of the five steps in individual rehabilitation: Selection of clients, needs assessment, choosing an intervention, monitoring / follow--up of clients during rehabilitation, and separation at the end of the rehabilitation process. The evaluators also suggested ways in which participation of the client in their own rehabilitation might be boosted, made recommendations for the organisational structure of programmes, on maximising community involvement and emphasised the importance of information systems and of investing in the programme staff. A number of recommendations were specific to the types of interventions implemented i.e, housing, education or micro-credit.

Evidence of the impact of SER on the quality of life of clients is limited, but suggests increased self-esteem and increased respect/status in the family and community.

 

Asia Pacific Disability Rehabilitation Journal, vol.19, no.1, 2008

Fostering disability-inclusive HIV/AIDS programs in northeast India : a participatory study

et al
June 2007

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"This paper summarises findings from a participatory study which aimed to develop practical guidelines to make HIV programmes in the states of Manipur and Nagaland more disability-friendly...The objectives were to: 1) explore HIV risk and risk perception in relation to people with disability (PWD) among HIV and disability programmers, and PWD themselves; 2) identify HIV-related education and service needs and preferences of PWD; and 3) utilise findings and stakeholder consultation to draft practical guidelines for inclusion of disability into HIV programming in this region of India"

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

A community-based health education programme for bio-environmental control of malaria through folk theatre (Kalajatha) in rural India

GHOSH, Susanta K
et al
December 2006

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Kalajatha is a popular, traditional art form of folk theatre depicting various life processes of a local socio-cultural setting. It is an effective medium of mass communication in the Indian sub-continent especially in rural areas. Using this medium, an operational feasibility health education programme was carried out for malaria control. This study was carried out under the primary health care system involving the local community and various potential partners

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