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Systematic review of interventions for reducing stigma experienced by children with disabilities and their families in low and middle-income countries: state of the evidence.

SMYTHE, Tracey
ADELSON, Jaimie
POLACK, Sarah
March 2020

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A literature review was carried out to identify and assess the evidence for interventions to reduce stigma experienced by children with disabilities and their families in low and middle-income settings. A systematic review of seven databases (MEDLINE, EMBASE, Global Health, PsycINFO, Social Policy and Practice, CINAHL, IBSS) for articles published January 2000 to April 2018 was carried out. Data were extracted on study population, study design, intervention level(s) and target group, and type(s) of stigma addressed. A narrative approach was used to synthesise the results.

Twenty studies were included. The majority (65%) of interventions targeted enacted stigma (negative attitudes) and the most common intervention approach was education/training (63%). Over half (54%) of interventions were delivered at the organisational/ institutional level and only four studies targeted more than one social level. The most common disability targeted was epilepsy (50%) followed by intellectual impairment (20%). 

doi: 10.1111/tmi.13388

Trop Med Int Health. 2020 Mar

Forgotten in a crisis: Addressing dementia in humanitarian response

GLOBAL ALZHEIMER'S & DEMENTIA ACTION ALLIANCE
ALZHEIMER'S DISEASE INTERNATIONAL
ALZHEIMER'S PAKISTAN
May 2019

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Every 3 seconds someone develops dementia and it’s one of the leading causes of death worldwide. Despite being some of the most at-risk in times of natural disaster, conflict and forced migration, there is a lack of awareness that dementia is a medical condition, meaning people with dementia are being neglected when they’re most in need of support.

This report investigates ways humanitarian emergency responses can protect and support people living with dementia. It draws on the experiences of people affected by dementia, Alzheimer’s specialists in affected countries, humanitarian organisations and inter-governmental organisations including the World Health Organisation and UNHCR.

Our findings reflect a wider issue of a lack of support for older people and those with disabilities in humanitarian response. We have found that people with dementia are systemically overlooked, due to a lack of global awareness of the condition and associated stigma.

The report is a collaboration between the Global Alzheimer’s & Dementia Action Alliance, Alzheimer’s Disease International and Alzheimer’s Pakistan.

Right to health: Reality of persons with spina bifida and hydrocephalus

MCPHERSON. Amy
January 2017

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"This report maps the situation of persons with SBH in relation to healthcare access and is a follow up of the CRPD Concluding Observations Art.25. Through a comprehensive survey, IF collected valuable data on the experiences, satisfaction, and perceptions of healthcare coverage of individuals with SBH across Europe. Based on its findings, the financial coverage of treatment and assistive products for patients with SBH is grossly insufficient across the EU. Europe as a whole lacks multidisciplinary care and specialised SBH teams, which translates into long waiting times and insufficient knowledge of the SBH specificities. 

Considering these findings, IF urges the EU Member States to adequately support the healthcare needs of persons with SBH, and to invest more substantially into creating multidisciplinary clinics that can help avoid preventable complications 11 and may reduce the overall burden 12 on the patient and the system. In addition, the Member States should actively support creation of the European Reference Networks as a way of improving care for persons with SBH. IF also calls on the European institutions for support in training medical professionals on rights of persons with disabilities."

The Malawi key informant child disability project

TATARYN, Myroslava
et al
August 2014

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“The aim of this study was to use the KIM to estimate the prevalence of moderate/severe physical, sensory and intellectual impairments and epilepsy among children in two districts (Ntcheu and Thyolo) in Malawi. The Key Informant Method (KIM) is a novel method for generating these data. KIM focuses on training community volunteers to identify local children who may have disabilities, who are then screened by medical professionals and referred on for appropriate health and rehabilitation interventions. Consequently, the method offers an alternative to population-based surveys of disability in children, which can be costly and time consuming”

The Malawi key informant child disability project : summary report

TATARYN, Myroslava
et al
August 2014

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This report provides a summary of research project conducted by the International Centre for Evidence in Disability at the London School of Hygiene and Tropical Medicine and the University of Malawi. The study used the Key Informant Method (KIM) to estimate the prevalence of moderate/severe physical, sensory and intellectual impairments and epilepsy among children in two districts (Ntcheu and Thyolo) in Malawi. This report presents summary of the study’s background information, aims and objectives, key findings, conclusions and recommendations

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

Sustaining human development : addressing NCDs and disability across the lifecourse

THE NCD ALLIANCE
et al
2013

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This report explores three interconnected global trends — a growing burden of non-communicable diseases (NCDs), the rising prevalence of disability, and changing global population demographics (including rapidly ageing populations). The report highlights that there issues were collectively neglected as policy priorities during the era of the Millennium Development Goals (MDGs). It stresses that the unique opportunity to ensure a future framework that fully integrates NCDs, that goals and targets drive progress for all people including persons with disabilities, and that a lifecourse and rights-based approach underpins all goals and targets to ensure no one is left behind

Community volunteers : an asset for detecting and following up children with disabilities

INTERNATIONAL CENTER FOR EVIDENCE ON DISABILITY (ICED)
December 2012

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This video presents a  recording of a seminar held at the London School of Hygiene and Tropical Medicine (LSHTM) in November 2012.  The seminar explores the findings and recommendations from a four year CBM-funded project in Bangladesh and Pakistan to identify children with disabilities and connect them with appropriate rehabilitative services

World Health Statistics 2012

WORLD HEALTH ORGANISATION (WHO)
2012

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"World Health Statistics 2012 contains WHO’s annual compilation of health-related data for its 194 Member States, and includes a summary of the progress made towards achieving the health-related Millennium Development Goals (MDGs) and associated targets. This year, it also includes highlight summaries on the topics of noncommunicable diseases, universal health coverage and civil registration coverage"
Note: The summary brochure, full report, report in English by section, the indicator compendium and printed copy order forms are available from the link above

CVD project evaluation : baseline diabetes study, Davao, Philippines 2010

PILLERON, Sophie
June 2011

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This study gathered baseline data for the CVD Project evaluation. "This study also concerned gathering information on the nature of diabetes and common practices in diabetes management and care, to improve project implementation strategy and data on promoting health care services in the community...This study was the first part of a quasi-experimental before-after here-there study conducted in 10 intervention barangays and 5 control barangays of Davao City. The study population consisted of people with diabetes aged 20 years and above who had visited the Barangay Health Centre and had proof of a doctor’s diagnosis for diabetes mellitus or proof of a relative-to-diabetes medicine prescription...Despite its limitations, this study provides a first insight on the people living with diabetes in Davao City. With 72% of diabetics having uncontrolled glycaemia, this study shows the relevance of the CVD project. As a baseline, this study provides comparison elements for the 2013 survey in order to test effectiveness of the CVD project with the percentage of diabetics with HbA1c<6.5% as effectiveness criterion"
DS/RD 01

Diabetes prevention and control projects in countries with limited resources|Lessons from experience : know-how analysis

BONARERI, Elizabeth
et al
December 2009

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This analysis paper presents the ‘know-how’ acquired by Handicap International in its diabetes prevention and control projects. It provides six practical know-how analysis sections focusing upon stakeholder mobilisation, services in communities, the decentralisation of diabetes care, diabetes clubs for persons with diabetes, supporting associations of persons with diabetes and conducting a study on a disabling disease project. This report would be useful to anyone interested in diabetes prevention and control in developing countries

Economic implications of chronic illness and disability in Eastern Europe and the former Soviet Union

METE, Cem
Ed
2008

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Specific to Eastern Europe and the former Soviet Union, this comprehensive resource aims to examine the poverty-disability relationship in transition countries. It explores the linkages between disability and employment, school enrolments, and the time-use of adults. This report also considers more broadly the nature of service delivery and the socio-economic implications for disabled people

National fact sheet India (provisional data) : 2005-2006 National family health survey (NFHSIII)

INTERNATIONAL INSTITUTE FOR POPULATION SCIENCES, MUMBAI
2007

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This fact sheet presents provisional information on key indicators and trends at a national level from the 2005-2006 National Family Health Survey (NFHS-3), the third in the NFHS series of surveys. The survey provides information on population, health and nutrition in India and each of its 29 states, based on a sample of households which is representative at national and state levels. NFHS-3 provides trend data on key indicators and includes information on several new topics, such as HIV/AIDS-related behaviour and the health of slum populations. For the first time, NFHS-3 also provides information on men and unmarried women. In addition, HIV prevalence is measured at the national level and for selected states. The NFHS-3 fieldwork was conducted by 18 Research Organisations between December 2005 and August 2006

Tele-neurosurgery facility inaugurated in Banglore hospital

September 2005

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A report on the inauguration of the tele-neurosurgery facility at Manipal Hospital in Bangalore. The facility will allow access to consultants working in the neurosurgical intensive care unit at the hospital and the unit will additionally provide continuous medical education in the form of talks, workshops and live surgical demonstrations

Preventing chronic diseases : a vital investment. Overview

WORLD HEALTH ORGANIZATION (WHO)
2005

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This report urges health planners and decision-makers influence multisectoral government action to prevent chronic diseases. It dispels the long-held misunderstandings about heart disease, stroke, cancer and other chronic diseases that have contributed to their global neglect. It states clearly that 80% of the 35 million chronic disease-related deaths in 2005 will occur in low and middle income countries, where they affect men and women at younger ages than in high income countries. Premature deaths in countries such as China, India and the Russian Federation are projected to cost billions of dollars over the next 10 years

Orientation of participatory approaches on community enquiries regarding lymphatic filariasis

BHANOT, Amit
SHRIVASTAVA, Archana
September 2004

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This report provides an overview of approaches for participatory community planning and enquiries regarding lymphatic filariasis following a workshop. The goal of this document is for health staff, program planners and program managers working for global elimination of lymphatic filariasis, to have an overview of the approaches for participatory community planning and enquiries. It provides guiding principles on methods that can be utilised and source of ideas for probe or explorations that can be made to comprehend the knowledge, attitudes and practices among the endemic communities towards lymphatic Filariasis ”Workshop on the orientation of participatory approaches on community enquiries regarding lymphatic filariasis
Orissa, India
12-16 April 2004

Women's stories, women's lives : experiences with cervical cancer screening and treatment

BOYD, Anne R
BURNS, Michele
Eds
2004

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This publication is a collection of stories based on interviews with women in developing countries who participated in ACCP programmes. These women's stories illustrate the unnecessary suffering cervical cancer can cause women and their families and how prevention programs can save women's lives. ACCP projects have focused on regions in which cervical cancer incidence and mortality are highest: sub-Saharan Africa, Latin America and South Asia, and have also focused on reaching women in their 30s and 40s

Speaking of health : assessing health communication strategies for diverse populations

INSTITUTE OF MEDICINE
2002

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This book looks at the challenges of delivering important health messages to different audiences. Using case studies in the areas of diabetes, mammography, and mass communication campaigns, it examines the ways in which messages must be adapted to the unique informational needs of their audiences if they are to have any real impact. It also looks at basic theories of communication and behaviour change and focuses on where they apply and where they don't. Although written for the context of the USA, the principles of adapting health messages to the needs of minority populations may have relevance in developing countries

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