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Extra costs of living with a disability: A review and agenda for research

MITRA, Sophie
PALMER, Michael
KIM, Hoolda
MONT, Daniel
GROCE, Nora
April 2017

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Background
There has been a growing interest in disability and poverty on the international research and policy stages. Poverty assessments for persons with disabilities may be affected by the experience of extra costs associated with a disability.

Objective
This article provides a systematized review of the global literature on the direct costs associated with living with a disability at the individual or household level.

Methods
We searched three databases for peer-reviewed journal articles that estimated extra costs associated with disability: Econlit, SocIndex and PubMed.

Results
We found 20 such studies conducted in 10 countries. These studies were predominantly from high-income countries. Although studies were heterogeneous (e.g., in terms of disability measures and cost methodologies), estimated costs were sizeable and some patterns were consistent across studies. Costs varied according to the severity of disability, life cycle and household composition. Highest costs were observed among persons with severe disabilities, and among persons with disabilities living alone or in small sized households.

Disability and Health Journal
Volume 10, Issue 4, October 2017, Pages 475-484
https://doi.org/10.1016/j.dhjo.2017.04.007

Association between Zika virus infection and microcephaly in Brazil, January to May, 2016: preliminary report of a case-control study

DE ARAUJO, Thalia Velho Barreto
et al
December 2016

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The microcephaly epidemic, which started in Brazil in 2015, was declared a Public Health Emergency of International Concern by WHO in 2016. Preliminary results of a case-control study investigating the association between microcephaly and Zika virus infection during pregnancy are reported. A case-control study was carried out in eight public hospitals in Recife, Brazil. Cases were neonates with microcephaly. Two controls (neonates without microcephaly), matched by expected date of delivery and area of residence, were selected for each case.

The Lancet Infectious Diseases,  Vol. 16, No. 12, pp. 1356–1363, Dec 2016

DOI: http://dx.doi.org/10.1016/S1473-3099(16)30318-8

Changing attitudes to child disability in Africa

THE LANCET
December 2014

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This brief editorial published in the Lancet highlights the situation of disabled children in Africa with reference to the 2014 publication of The African Report on Children with Disabilities by The African Child Policy Forum

 

The Lancet, Vol 384, No. 9959

Health-related rehabilitation and human rights : analyzing States' obligations under the United Nations convention on the rights of persons with disabilities

SKEMPES, Dimitrios
STUCKI, Gerold
BICKENBACH, Jerome
August 2014

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This article analyses States' obligations with respect to rehabilitation of health under the Convention on the Rights of Persons with Disabilities. Based on internationally accepted standards of human rights law interpretation and drawing extensively on current literature from the field of global health policy, the authors identify the range of governments legal obligations regarding health related rehabilitation across several key human right commitment areas, such as equality and nondiscrimination; progressive realization; international cooperation; participation in policymaking processes; the accessibility, availability, acceptability, and quality of rehabilitation services; privacy and confidentiality; and informed decision making and accountability.To support effective implementation of the Convention, governments need to focus their efforts on all these areas and devise appropriate measures to monitor compliance with human rights principles and standards in rehabilitation policy, service delivery, and organization. This study lays the foundations for a rights-based approach to rehabilitation offering a framework that may assist in the evaluation of national rehabilitation strategies, the development of appropriate indicators and the identification of gaps in the implementation of the Convention

Archives of Physical Medicine and Rehabilitation, Volume 96, Issue 1

Surviving polio in a post-polio world

GROCE, Nora
BANKS, Lena Morgan
STEIN, Michael Ashley
April 2014

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This paper reviews what is currently known about disabled survivors of polio and highlights areas of need in public health research, policy and programming. Based on a literature review, discussion and field observations, the authors identify continuing challenges posed by polio and argue that the attention, funding and commitment now being directed towards eradication be shifted to provide for the rehabilitative, medical, educational and social needs of those for whom the disabling sequelae of polio will remain a daily challenge for decades to come

Social Science & Medicine, Vol 107

The interaction of malnutrition and neurologic disability in Africa

KERAC, Marko
et al
March 2014

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Malnutrition and neurodisability are both major public health problems in Africa. This review highlights key areas where they interact. These areas of interaction include maternal malnutrition, toxin ingestion, macronutrient malnutrition and micronutrient deficiencies - all of which cause or are caused by neurodisability, The article concludes that there is an urgent need for nutrition and disability programmes to work more closely together

Seminars in Pediatric Neurology, Volume 21, Issue 1

Assessment of neurodisability and malnutrition in children in Africa

GLADSTONE, Melissa
MALLEWA, Mac
ALUSINE JALLOH, Alhaji
VOSJUIKL, Wieger
POSTELS, Douglas
GROCE, Nora
KERAC, Marco
MOLYNEUX, Elizabeth
March 2014

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Neurodevelopmental delay, neurodisability, and malnutrition interact to contribute a significant burden of disease in global settings. Assessments which are well integrated with plans of management or advice are most likely to improve outcomes. Assessment tools used in clinical research and programming to evaluate outcomes include developmental and cognitive tools that vary in complexity, sensitivity, and validity as well as the target age of assessment. Few tools have been used to measure socioemotional outcomes and fewer to assess the disabled child with malnutrition. There is a paucity of tools used clinically which actually provide families and professionals with advice to improve outcomes. Brain imaging, electroencephalography, audiology, and visual assessment can also be used to assess the effect of malnutrition on brain structure and function. The interaction of neurodisability and malnutrition is powerful, and both need to be considered when assessing children.

Seminars in Pediatric Neurology, Child Neurology in Africa, Volume 21, Issue 1, March 2014, Pages 50–57

HIV issues and people with disabilities: A review and agenda for research

GROCE, Nora
et al
January 2013

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The AIDS and Disability Partners Forum at the UN General Assembly High Level Meetings on AIDS in New York in June 2011 and the International AIDS Conference in Washington, DC in July 2012 underscore the attention to the impact of HIV and AIDS on persons with disabilities. However, research on AIDS and disability, particularly a solid evidence base upon which to build policy and programming remains thin, scattered and difficult to access. In this review paper, we summarise what is known about the intersection between HIV and AIDS and disability, paying particular attention to the small but emerging body of epidemiology data on the prevalence of HIV for people with disabilities, as well as the increasing understanding of HIV risk factors for people with disabilities. We find that the number of papers in the peer-reviewed literature remains distressingly small. Over the past 20 years an average of 5 articles on some aspect of disability and HIV and AIDS were published annually in the peer-reviewed literature from 1990 to 2000, increasing slightly to an average of 6 per year from 2000 to 2010. Given the vast amount of research around HIV and AIDS and the thousands of articles on the subject published in the peer-reviewed literature annually, the continuing lack of attention to HIV and AIDS among this at risk population, now estimated to make up 15% of the world's population, is striking. However, the statistics, while too limited at this point to make definitive conclusions, increasingly suggest at least an equal HIV prevalence rate for people with disabilities as for their non-disabled peers.

Access to health care, reproductive health and disability: A large scale survey in Sierra Leone

GROCE, Nora
TRANI, Jean-Francois
BROWN, Joyce Brown
KETT, Maria
BAH, Osman
MORLAI, Teddy
BAILEY, Nicki
2011

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This is the first study to compare health status and access to health care services between disabled and non-disabled men and women in urban and peri-urban areas of Sierra Leone. It pays particular attention to access to reproductive health care services and maternal health care for disabled women. A cross-sectional study was conducted in 2009 in 5 districts of Sierra Leone, randomly selecting 17 clusters for a total sample of 425 households. All adults who were identified as being disabled, as well as a control group of randomly selected non-disabled adults, were interviewed about health and reproductive health. As expected, we showed that people with severe disabilities had less access to public health care services than non-disabled people after adjustment for other socioeconomic characteristics (bivariate modelling). However, there were no significant differences in reporting use of contraception between disabled and non-disabled people; contrary to expectations, women with disabilities were as likely to report access to maternal health care services as did non-disabled women. Rather than disability, it is socioeconomic inequality that governs access to such services. We also found that disabled women were as likely as non-disabled women to report having children and to desiring another child: they are not only sexually active, but also need access to reproductive health services.

Implementing the United Nations Convention on the Rights of Persons with Disabilities: principles, implications, practice and limitations

GROCE, Nora
KETT, Maria
TRANI, Jean Francois
LANG, Raymond
September 2011

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This paper examines the theories and principles upon which the Convention of the rights of people with disabilities (CRPD) are premised. It demonstrates the potential value and utility that these have in extending the inherent human rights that people with disabilities, are endowed. The implementation of the CRPD is a challenge considering the complex ‘rights based’ issues involved and because disabled people have to generate the commitment from civil society and government. It is argued that there is a need to move from policy to implementation, and that this needs to be adequately monitored and evaluated. Sustainable and effective interventions will benefit by being informed, monitored and evaluated based upon the broader human rights paradigm and the capabilities approach.

Alter
Volume 5, Issue 3, July–September 2011, Pages 206-220

https://doi.org/10.1016/j.alter.2011.02.004

Approaching the measurement of disability prevalence : the case of Zambia

LOEB, Mitchell E
EIDE, Arne H
MONT, Daniel
January 2008

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"Results from a national, representative survey of living conditions among people with disabilities in Zambia based, in part, on the work of the Washington Group on Disability Statistics (WG) that operationalises a functional approach to disability are presented and contrasted with historical census data to illustrate how a flexible approach to the measurement of disability is better suited to the multiple purposes of collecting disability statistics and to the diversity of disability in a population"
Alter, European Journal of Disability Research, Vol 2, No 1

What works? interventions for maternal and child under nutrition and survival

BHUTTA, Zulfigar
et al
January 2008

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This article "reviews interventions that affect maternal and child undernutrition and nutrition-related outcomes. These interventions included promotion of breastfeeding; strategies to promote complementary feeding, with or without provision of food supplements; micronutrient interventions; general supportive strategies to improve family and community nutrition; and reduction of disease burden (promotion of handwashing and strategies to reduce the burden of malaria in pregnancy). (The authors) showed that although strategies for breastfeeding promotion have a large effect on survival, their effect on stunting is small"
The Lancet, Vol 371, Issue 9610

Immunization rates among disabled children in Ecuador: Unanticipated findings

GROCE, Nora
AYORA, Paolo
KAPLAN, Lawrence
August 2007

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Researchers hypothesize that impoverished parents in developing countries may forego provision of healthcare for disabled children, instead allocating scarce resources to nondisabled children or other household needs. We compared the immunization rates of 32 children with complex special heathcare needs with those of 95 nondisabled siblings in coastal Ecuador. Almost 100% (31 of 32) of the disabled children studied were immunized at a rate comparable with their nondisabled siblings. We propose that this finding is attributable to an effective national immunization program and to positive local sociocultural attitudes toward disability. These findings underscore the need for more research on disability across cultures.

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

Physical medicine and rehabilitation clinics of North America : new advances in prosthetics and orthotics

KRAFT, George H
BOSWELL, Mark H
Eds
February 2006

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"This issue reviews the biomechanical assessment of the lower limb as well as discussing new dynamic lower limb orthoses used to compensate for weakness. Although lower limb amputations are less common than in the past, they still occur, and new developments are discussed. These include new developments in postoperative management, new socket designs and suspensions, new prostheses, and microprocessors for knee units. One of the newest concepts discussed is the use of the Lokomat robotic gait orthosis for gait retraining. The most striking of the new developments in upper limb prosthetics is the work done on myoelectric designs with myoelectric implants as a means of control. These are discussed in detail by a physician and prosthetist familiar with these topics. Other important topics are also covered. These include scoliosis treatment using spinal orthoses, orthotic management of the limb suffering from neuropathic pain, and the use of prosthetics in pediatric amputations"
Physical medicine and rehabilitation clinics of North America, Vol 17, No 1

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