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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

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

Hansen's disease recoverers as agents of change : a case study in Japan

HOSODA, Miwako
March 2010

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"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

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

ILEP learning guide four : how to prevent disability in leprosy

CROSS, Hugh
MAHATO, Margaret
2006

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"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

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

CROSS, Hugh
CHOUDHARY, Ramesh
December 2005

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"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

Self care : a catalyst for community development

CROSS, Hugh
CHOUDHURY, Ramesh
2005

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[Authors' abstract]: This paper presents salient findings from an evaluation of a programme designed to address the issue of leprosy related stigma in southern Nepal. The programme under the acronym STEP (Stigma Elimination Programme) adopted an approach that was dependent on the empowerment of people affected by leprosy. Empowerment was facilitated, primarily through selfcare group association. The premise was that, as people became increasingly self confident, as an effect of self-care, their focus could be shifted from the pursuit of personal goals to activities that could be undertaken for the benefit of their communities. As the self-care groups evolved, all 10 groups adopted a community development agenda. This paper outlines the projects that the groups planned and initiated and describes the method used to validate their efforts. It also gives results of surveys conducted to assess the impact of the programme on stigma, activity limitation and impairment

Stories of love, pain and courage : AIDS orphans and memory boxes

DENIS, Philippe
MAKIWANE, Nokhaya
2003

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This article reports on a project by the Sinomlando Centre for Oral History, in which memory boxes were used with young children in South Africa who had recently lost a parent due to AIDS. The act of making memory boxes and talking about the memories to be stored within it creates a space for families and communities to talk about life, death and plans for the future. This communication creates a psychosocial support network for young children with the aim of promoting resiliency so that they may be better able to cope with their loss. The article includes a short methodology of how the results of the project were gathered and three detailed case studies

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

BENBOW, Catherine
TAMIRU, Teferra
September 2001

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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

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

CROSS, Hugh
NEWCOMBE, Lesley
September 2001

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"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

Boiling point|a practitioner's journal on household energy, stoves and poverty reduction

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A technical journal for those working with household energy. Deals with technical, social, financial and environmental issues and aims to improve the quality of life for poor communities living in the developing world. Contains practical information on stove construction and design, appropriate technologies in the field of stoves and household energy, stove making materials, governmental and NGO stove programmes, research and development, associated sociological issues, cooking practices, fuel issues and conservation. Back issues available on CD-ROM. Previously published by Practical Action
Articles published online when they are ready
Free onine
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Infolep : leprosy information services

INFOLEP

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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

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