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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.

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

 

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.

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

Disability, CBR and inclusive development (DCID)

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

Exploring the Complexities of Leprosy-related Stigma and the Potential of a Socio-economic Intervention in a Public Health Context in Indonesia

DADUN, Dadun
PETERS, Ruth
LUSLI, Mimi
MIRANDA-GALARZA, Beatriz
VAN BRAKEL, Wim
ZWEEKHORST, Marjolein
DAMAYANTI, Rita
IRWANTO, Irwanto
BUNDERS, Joske
2016

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Purpose: This article explores the complexities of leprosy-related stigma and the potential effectiveness of a socio-economic intervention in Cirebon District, Indonesia.

 

Methods: A qualitative approach was adopted. 53 people affected by leprosy were interviewed, and 17 focus group discussions were conducted among people affected by leprosy, community and religious leaders, and health providers and other key persons who were all purposively selected.

 

Results:  People affected by leprosy face major socio-economic consequences. This was confirmed by key persons. Several opportunities for a possible socio-economic intervention were perceived, as also the barriers. People affected by leprosy are constrained by certain aspects of the health system (e.g., the health providers’ negative attitudes), views in society (e.g., misunderstandings about the condition, stigma), and the physical and social consequences of the disease (impairments, feelings of shame). Study participants identified strategies to deal with these barriers, as well as specific activities for a socio-economic intervention; in particular, the training of staff responsible for implementation.

 

Conclusion and Implications: Socio-economic interventions in the field of leprosy need to anticipate the barriers and develop strategies to deal with them. Cooperation between people working in the health system and those in the welfare / financial system is needed, to improve the quality of life of people affected by leprosy

Narratives Around Concealment and Agency for Stigma-reduction: A study of Women affected by Leprosy in Cirebon District, Indonesia

PETERS, R. M. H
HOFKER, M. E
VAN BRAKEL, W H
ZWEEKHORST, M B M
SEDA, F S S E
IRWANTO, I
BUNDERS, J F G
2014

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Purpose: This study analyses the experiences of women affected by leprosy, taking into consideration whether they concealed or disclosed their status, and looks specifically at their ‘agency’. The aim is to provide recommendations for stigma-reduction interventions.

 

Methods: The study population consisted of women affected by leprosy who live in Cirebon District, Indonesia. Study subjects were purposively selected on the basis of characteristics such as age and role in the community. After informed consent was obtained, they were interviewed in their homes. Data was collected through semi-structured in-depth interviews. Analysis was done with six points of focus: who knows, care, social stigma, feelings, self-isolation and agency.

 

Results: In total, 53 women were interviewed. Eight were omitted due to ambiguity over who knew about their leprosy status. Five different categories of ‘disclosure’ were identified, ranging from 1 woman who concealed completely to 19 (42%) who disclosed fully. Disclosure created possibilities for care and support, which 84% mentioned they received. In contrast, disclosure was also found to be linked to negative feelings, isolation and social stigma, which 18 women experienced. The women coped with this through acceptance, comforting themselves, trusting in God, focussing on recovery, friendship or finding inspiration in others. 

 

Conclusions: An analysis of these experiences helps to understand how women affected by leprosy are coping, and what they are already doing for and by themselves. This could be a starting point for more appropriate and effective stigma-reduction interventions. It is recommended to consider the following: i) assisting people with their choice, if any, of either concealment or disclosure, ii) the appropriateness of any intervention for people who (want to) conceal their illness, iii) the existing sources of care and support, and iv) the inner strength demonstrated and its three sources (spirituality, relationships and the desire to be cured).

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
2014

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Purpose: 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.

 

Methods: A cross-sectional study was conducted. People with leprosy-related disabilities were selected at home during field visits or at the rehabilitation centre for people with leprosy in Phnom Penh. People with locomotor disabilities were selected at the rehabilitation centre for persons with disabilities in Phnom Penh and Prey Veng. A pilot-tested, face-to-face semi-structured interview, with open and closed questions, and focus group discussions were used to investigate the perceived needs related to social and economic participation in the community. The interview was based on the International Classification of Functioning, Disability and Health (ICF) model of the WHO.

 

Results: Both groups of people with disabilities struggle with social exclusion in society. People with leprosy-related disabilities, in particular, live below the poverty line of US$ 0.5 per day. Most of the participants lived in rural areas. Participants raised the need for enhanced self-esteem and help in finding jobs. To overcome the difficulty in finding employment, they felt vocational training and microcredit to start businesses, were required.  

 

Conclusions: The study found that both groups of people with disabilities have similar needs to improve participation in social and economic life. Rehabilitation centres provide vocational training and microcredit. Self-help groups have also proven effective in reaching poor people with disabilities in rural areas and improving social participation. 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

Leprosy: Knowledge and Attitudes of Physiotherapists in Nigeria

AYANNIYI, O
DUNCAN, F O
ADENIYI, A F
2013

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Purpose: The objectives of this study were to investigate the knowledge and attitudes towards leprosy of physiotherapists in Nigeria.

 

Method: A cross-sectional survey of 330 physiotherapists, with minimum 1-year work experience in public hospitals in the 6 geo-political zones of Nigeria, was carried out. A pre-tested, self-administered questionnaire with open and close- ended questions was employed. Data obtained were analysed using descriptive and inferential statistics of Chi-square tests with Alpha level at 0.05.

 

Results: The respondents’ mean and range of years of job experience was 8.6 + 5.51 and 1 to 27 years respectively. Close to half (44.5%) of the physiotherapists had only a fair knowledge about leprosy and 165 (50%) had poor attitudes towards leprosy and persons with leprosy. There were significant associations between the schools of training and each level of knowledge (χ2 = 45.04; p = 0.0001) and attitudes of physiotherapists to leprosy and to persons who have suffered from leprosy (χ2 = 20.26; p = 0.009). There was, however, no significant association between years of job experience and each of knowledge (χ2 = 4.76; p = 0. 312), or attitudes of the physiotherapists to leprosy (χ2 = 4.55; p = 0.337).

 

Conclusions and Implications: It was concluded that a substantial number of physiotherapists in Nigeria had fair knowledge but poor attitudes towards leprosy. The institution of training appears to have an influence on their knowledge and attitudes. It is therefore recommended that educational and training programmes on leprosy should be organised and emphasised at the basic training institutions for physiotherapists.

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.

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

Quality of Life, Perceived Stigma, Activity and Participation of People with Leprosy-Related Disabilities in South-East Nepal

BROUWERS, C
VAN BRAKEL, W H
CORNIELJE, H
POKHREL, P
DHAKAL, K P
BANSTOLA, N
2011

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In Nepal, many people live with leprosy-related disabilities. The objective of this stdy was to evalate dierences in socio-economic characteristics, ality of life , perceived stima, activity and participation amon people aected by leprosy as a group and between this group and the general population, and to identify prime determinants of among the leprosy-aected people.

 

People with leprosy-related disabilities (N=100; 54DGI/46DGII) and community controls (N=100) were selected from Morang district, South-East Nepal, using uota sampling. , perceived stigma and participation and activity limitations were measured using the Nepali abbreviated version of the World Health Organisation Quality of Life (WHOQOL) assessment and the Nepali versions of the Jacoby Scale, Participation Scale and Green Pastures Activity Scale (GPAS), respectively.

 

Total QOL, participation and activity levels of people aected by leprosy were worse than those of the general population. Regression analysis showed that the ability to maintain a family, satisfaction with health, vocational training, se, activity and participation limitations (the laer for QOL only), perceived stigma and living situation (i.e. joint family, type of house) were signicantly associated with a deterioration in QOL and higher participation restriction in one or both of the grading groups.

 

There is an urgent need for interventions focused on uic referral of people with leprosy, to minimize the development of visible impairments, and social rehabilitation. The laer can be achieved by creating more public awareness, providing (nancial) support for income generating projects and /or vocational training to leprosy- aected people, and by encouraging them to be involved in all community development activities. The current results indicate that such measures would help improve the uality of life of people with leprosy-related disabilities.

 

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"

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

VAN VEEN , Natasja H J
MCNAMEE, Paul
RICHARDUS, Jan Hendrik
SMITH, W Cairns S
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

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

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

EBENSO, Bassey
FASHONA, Aminat
AYUBA, Mainas
IDAH, Mike
ADEYEMI, Gbemiga
S-FADA, Shehu
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 P-scale results showed four men suffered significant participation restrictions (scores of >12 points) in finding work and in social integration. The narratives of SER participants, focus groups and key informants showed that SER improved self-esteem, financial independence, acquisition of new skills, and access to public institutions. 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 positive 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

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