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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

 

Measuring treatment outcome in children with developmental coordination disorder; responsiveness of six outcome measures

HEUS, Inge
WEEZENBERG, Daphne
SEVERIJEN, Sebastiaam
VLIELAND, Thea Vliet
VAN DER HOLST, Menno
July 2020

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Purpose: Although measuring outcome of rehabilitation in children with Developmental Coordination Disorder is considered important no consensus exists on which instruments to use. An important attribute of a measurement instrument would be that it is sensitive to clinical changes. The aim of this prospective, observational study was therefore to investigate the responsiveness of six potentially suitable instruments.

 

Methods: Forty-one children (34 boys, median age 7.8 years, Inter Quartile Range: 7.2–9.2) receiving multidisciplinary rehabilitation treatment for Developmental Coordination Disorder were included (mean treatment time: 32.8 h, Standard Deviation 7.3). The following instruments were applied before and after rehabilitation: Movement-Assessment-Battery-Children-2 (MABC-2), Canadian Occupational Performance Measure (COPM), Systematic detection writing problems (SOS-2-NL), DCD-daily, Behaviour Rating Inventory of Executive Function (BRIEF), and TNO-AZL children’s Quality of Life questionnaire (TACQOL)). Change-scores (paired t-test/Wilcoxon-test) and responsiveness (Effect-sizes and Standardized-Response-Means) were calculated.

 

Results: Significant differences over time were found for the Canadian Occupational Performance Measure, DCDdaily and Movement-Asessment-Battery-Children-2 (p < 0.05). The responsiveness of these instruments was moderate-high (Canadian Occupational Performance Measure-performance Effect-Size:1.70/Standardized-Response-Mean:1.81, Canadian Occupational Performance Measure-satisfaction Effect-Size:1.65/Standardized-Response-Mean 1.53; DCDdaily-total-score Effect-Size:0.40/Standardized-Response-Mean:0.62, DCDdaily-Quality-score Effect-Size:0.74/Standardized-Response-Mean:0.89, DCDdaily-time-score Effect-Size:0.21/Standardized-Response-Mean:0.43; MABC-2-total-score Effect-Size:0.42/Standardized-Response-Mean:0.43, MABC-2-Ball-skills-score Effect-Size:0.33/Standardized-Response-Mean:0.36). Systematic detection of writing problems (SOS-2-NL), Behaviour Rating Inventory of Executive Function (BRIEF) and TNO-AZL children’s Quality of Life questionnaire (TACQOL) were not responsive to change.

 

Conclusion: Although the Movement-Assessment-Battery-Children-2 test is the most widely used instrument when measuring rehabilitation outcome in Developmental Coordination Disorder, the Canadian Occupational Performance Measure and DCDdaily seem to be more responsive and constitute a valuable addition.

COVID-19 outcomes among people with intellectual and developmental disability living in residential group homes in New York State

LANDES, Scott D.
TURK, Margaret A.
FORMICA, Margaret K.
McDONALD, Katherine E.
STEVENS, J. Dalton
June 2020

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In order to investigate whether people with intellectual and developmental disabilities (IDD) are at higher risk of severe outcomes from COVID-19, the COVID-19 outcomes among people with IDD living in residential groups homes in the state of New York and the general population of New York State were compared. Data for people with IDD are from a coalition of organizations providing over half of the residential services for the state of New York, and from the New York State Department of Health. Analysis describes COVID-19 case rates, case-fatality, and mortality among people with IDD living inresidential group homes and New York State through May 28, 2020

 

Disability and Health Journal, https://doi.org/10.1016/j.dhjo.2020.100969

 

Validation of the International Classification of Functioning, Disability and Health (ICF) core set for Diabetes Mellitus from nurses’ perspective using the Delphi method

WILDEBOER, Anita T
STALLINGA, Hillegonda A
ROODBOL, Petrie F
May 2020

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Purpose: To explore content validity of the ICF core set for Diabetes Mellitus from nurses’ perspective.

 

Materials and methods: A two-round Delphi study was conducted with nurses specialized in diabetes care, who were recruited by purposive sampling. Level of agreement on relevance of ICF categories was calculated using Item-level Content Validity Index.

 

Results: Twenty-seven nurses judged 147 second-level ICF categories on relevance for people with Diabetes Mellitus. Agreement was reached on 65 (44.2%) categories, of which 46 were from the ICF core set for Diabetes Mellitus, 17 were from previous validation studies, and two were additional categories that were mentioned as relevant. Forty-six out of the 65categories were derived from the component body functions and structures. No agreement was reached on 82 (55.8%) categories, of which 33 were derived from the component environmental factors.

 

Conclusions: Content validity of the ICF core set for Diabetes Mellitus was partially supported by specialized nurses. Agreement was predominantly reached on biomedical categories. Content validity of categories derived from environmental factors received little support.

 

Relevance: The nursing profession should be aware of a gap between the current biomedical focus and the desired biopsychosocial approach; the latter of which is recommended in chronic care.

Integrating geospatial data and measures of disability and wealth to assess inequalities in an eye health survey: An example from the Indian Sunderbans

MOHANTY, Soumya
et al
December 2019

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The Sunderbans are a group of delta islands that straddle the border between India and Bangladesh. For people living on the Indian side, health services are scarce and the terrain makes access to what is available difficult. In 2018, the international non-governmental organisation Sightsavers and their partners conducted a population-based survey of visual impairment and coverage of cataract and spectacle services, supplemented with tools to measure equity in eye health by wealth, disability, and geographical location. Two-stage cluster sampling was undertaken to randomly select 3868 individuals aged 40+ years, of whom 3410 were examined

 

Int J Environ Res Public Health. 2019 Dec; 16(23): 4869

doi: 10.3390/ijerph16234869

Unimproved water sources and open defecation are associated with active trachoma in children in internally displaced persons camps in the Darfur States of Sudan

MACLEOD, C K
October 2019

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To estimate the proportion of children with trachomatous inflammation—follicular (TF) and adults with trachomatous trichiasis (TT) in internally displaced persons (IDP) camps in the Darfur States of Sudan and to evaluate associated risk factors. 

A random-effects hierarchical model was used to evaluate factors associated with TF and TT. Thirty-six IDP camps were represented in the survey data in which 1926 children aged 1–9 years were examined, of whom 38 (8%) had TF. Poor sanitation, younger age and living in a household that purchased water from a vendor were associated with TF in children aged 1–9 years.

 

Transactions of The Royal Society of Tropical Medicine and Hygiene. 2019 Oct 11;113(10):599-609

DOI:10.1093/trstmh/trz042

India’s disability estimates: Limitations and way forward

RAKHI, Dandona
et al
September 2019

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With India preparing for the next decennial Census in 2021, disability estimates and data collection methodology between the Census 2011 and the most recent population-level survey for India and its states were compared, to highlight the issues to be addressed to improve robustness of the disability estimates in the upcoming Census.

 

Data from the Census 2011 and from two complementary nationally representative household surveys that covered all Indian states with the same methodology and survey instruments–the District-Level Household Survey-4 (DLHS-4, 2012–2013) and the Annual Health Surveys (AHS three rounds, 2010–11, 2011–12 and 2012–13) were used. Data from DLHS-4 and AHS 2012–13 round were pooled to generate estimates for the year 2012–13. Data collection methodology between the sources was compared, including the review of definitions of each type of disability. The overall, mental, visual, hearing, speech, and movement disability rate (DR) per 100,000 population were compared between the sources for India and for each state, and the percent difference in the respective rates was calculated
 

Growing up with a disability following paralytic poliomyelitis: experiences from persons with late effects of polio

SJODAHL HAMMARLUND, Catharina
LEXELL, Jan
BROGARDH, Christina
August 2019

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Purpose: To describe the experiences of growing up after acute paralytic poliomyelitis and strategies used to adapt to the new situation.

 

Methods: Seven women and seven men (mean age 70 years, min–max 61–78 years) with late effects of polio, who had contracted paralytic polio in their childhood. Data were collected using semi-structured interviews, transcribed verbatim, and analyzed by systematic text condensation.

 

Results: Memories of contracting acute paralytic poliomyelitis involved being immobilized and sent away from home for surgical and physiotherapeutic treatment. Growing up in a social context that was often tough and unfriendly resulted in the development of strategies, such as optimistic thinking, trying to blend in, trusting one’s ability to manage, and to handle the preconceptions and expectations of others. At the onset of late effects of polio, some of these strategies were still functioning, whereas overachieving, disregarding pain, and weariness were not.

 

Conclusion: The challenges of growing up with a disability following paralytic polio led to the development of various psychological strategies for managing daily life. By understanding these experiences and strategies, knowledge may be gained in assisting rehabilitation professionals to better support persons with late effects of polio in adapting to the new situation.

Inter- and intra-household perceived relative inequality among disabled and non-disabled people in Liberia

CAREW, Mark T.
COLBOURN, Tim
COLE, Ellie
NGAFUAN, Richard
GROCE, Nora
KETT, Maria
July 2019

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Evidence suggests that people with disabilities are the most marginalised and vulnerable group within any population. However, little is known about the extent of inequality between people with and without disabilities in contexts where the majority of persons experience extreme poverty and hardship. This includes in Liberia, where very little is understood about the lives of disabled people in general. This study uses a multidimensional wellbeing framework to understand perceived relative inequality associated with disability by assessing several facets of wellbeing across and within households containing disabled members (N = 485) or households with no disabled members (N = 538) in Liberian communities (Total individuals surveyed, N = 2020). Statistical comparisons (adjusted for age, sex, education and wealth differences and clustered at the household, village and county level) reveal that disabled Liberians are managing similarly to non-disabled Liberians in terms of income and education, but experience many perceived relative inequalities including in life satisfaction, transport access, political participation and social inclusion.

 

PLoS ONE 14(7)

https://doi.org/10.1371/journal.pone.0217873

Making visible the invisible: Why disability-disaggregated data is vital to “Leave No-One Behind”

ABUALGHAIB, Ola
GROCE, Nora
SIMEU, Natalie
CAREW, Mark T
MONT, Daniel
May 2019

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It is commonly assumed that there is a lack of disability data, and development actors tend to attribute lack of data as the reason for failing to proactively plan for the inclusion of people with disabilities within their programming. However, it is an incorrect assumption that there is a lack of disability data. There is now a growing amount of disability data available. Disability, however, is a notoriously complex phenomenon, with definitions of disability varying across contexts, as well as variations in methodologies that are employed to measure it. Therefore, the body of disability data that does exist is not comprehensive, is often of low quality, and is lacking in comparability. The need for comprehensive, high quality disability data is an urgent priority bringing together a number of disability actors, with a concerted response underway. We argue here that enough data does exist and can be easily disaggregated as demonstrated by Leonard Cheshire’s Disability Data Portal and other studies using the Washington Group Question Sets developed by the Washington Group on Disability Statistics. Disaggregated data can improve planning and budgeting for reasonable accommodation to realise the human rights of people with disabilities

 

Sustainability 2019, 11(11), 3091

https://doi.org/10.3390/su11113091

Access to social protection among people with disabilities: Mixed methods research from Tanahun, Nepal

BANKS, Lena
et al
April 2019

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This study explores participation of people with disabilities in social protection programmes, with Tanahun District of Nepal as the study setting. This research uses mixed methods to assess coverage (through direct survey), how coverage varies amongst people with disabilities (e.g. by gender, impairment type), as well as challenges and facilitators to enrolling in or using relevant social protection programmes. This research benefits from a population-based study design and from the use of the Washington Group question sets

 

The European Journal of Development Research (2019) 31:929–956

https://doi.org/10.1057/s41287-019-0194-3

The use of information and communication technology in healthcare to improve participation in everyday life: a scoping review

ZONNEVELD, Michael
PATOMELLA, Ann-Helen
ASABA, Eric
GUIDETTI, Susanne
April 2019

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Background and purpose: The increase in use of everyday information and communication technologies can lead to the need for health professionals to incorporate technology use competencies in practice. Information and communication technologies has the potential to improve participation in daily life among people with disability. The aim was to review and describe evidence of the use of information and communication technology, including mobile technology, for improving participation in everyday life. A secondary aim was to describe how study outcomes were related to participation.

 

Materials and methods: A scoping review methodology was used to identify studies through databases as MEDLINE, CINAHL, Cochrane Library. Thereafter, the studies were screened and assessed for inclusion.

 

Results: Eleven studies were included. The most commonly used technology were videoconferencing and the telephone. Ten of the 11 studies reported a change in participation in everyday life. Participation was mainly described as involvement in a life situation or related to activities of daily living.

 

Conclusion: Delivering an intervention to improve participation through information and communication technology can be a valid option in rehabilitation. There is a need to measure and describe the intervention and its outcomes in relation to a definition of participation in future studies.

Adding meaning to physical fitness test results in individuals with intellectual disabilities

OPPEWAL, Alyt
HILGENKAMP, Thessa I M
February 2019

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Purpose: Evaluating physical fitness in individuals with intellectual disabilities (ID) is challenging, and a multitude of different versions of tests exist. However, psychometric properties of these tests are mostly unknown, and both researchers as clinical practitioners struggle with selecting appropriate tests for individuals with ID. We aim to present a selection of field tests with satisfactory feasibility, reliability, and validity, and of which reference data are available.

 

Methods: Tests were selected based on (1) literature review on psychometric properties, (2) expert meetings with physiotherapists and movement experts, (3) studies on population specific psychometric properties, and (3) availability of reference data. Tests were selected if they had demonstrated sufficient feasibility, reliability, validity, and possibilities for interpretation of results.

 

Results: We present a basic set of physical fitness tests, the ID-fitscan, to be used in (older) adults with mild to moderate ID and some walking ability. The ID-fitscan includes tests for body composition (BMI, waist circumference), muscular strength (grip strength), muscular endurance (30 second and five times chair stand), and balance (static balance stances, comfortable gait speed).

 

Conclusions: The ID-fitscan can be used by researchers, physiotherapists, and other clinical practitioners to evaluate physical fitness in adults with ID. Recommendations for future research include expansion of research into psychometric properties of more fitness tests and combining physical fitness data on this population in larger datasets.

Rating early child development outcome measurement tools for routine health programme use

BOGGS, Dorothy
et al
January 2019

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Background identification of children at risk of developmental delay and/or impairment requires valid measurement of early child development (ECD). ECD measurement tools were systematically assessed for accuracy and feasibility for use in routine services in low income and middle-income countries (LMIC).

Building on World Bank and peer-reviewed literature reviews, available ECD measurement tools for children aged 0–3 years used in ≥1 LMIC were identified and matrixed according to when (child age) and what (ECD domains) they measure at population or individual level. Tools measuring <2 years and covering ≥3 developmental domains, including cognition, were rated for accuracy and feasibility criteria using a rating approach derived from Grading of Recommendations, Assessment, Development and Evaluations

The Arabic version of Trinity Amputation and Prosthetic Experience Scale - Revised (TAPES-R) for lower limb amputees: Reliability and validity

MASSARWEH, Reem
SOBUH, Mohammad
2019

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Purpose: Despite the importance of the evaluation process in lower limb prosthetic rehabilitation, prostheses are rarely evaluated properly in the Arab world. This is partly due to the absence of any suitable Arabic evaluative tool. The aim of this study is to translate TAPES-R (a standardised evaluative questionnaire) into Arabic and to investigate its psychometric properties on lower limb amputees. Such a tool would ultimately be of benefit for clinical follow-up and research purposes.

 

Method: International standards were followed for the forward- and back-translation of the TAPES-R questionnaire. A sample of 111 Arabic-speaking volunteers with lower limb amputation completed the translated version of the questionnaire. The responses were then statistically analysed using factor analysis and Cronbach’s α to assess the content and construct validity, and internal consistency (reliability) respectively.

 

Results: Factor analysis showed that the questionnaire’s items (included in the analysis) can be divided into three distinct dimensions as was originally suggested. The distribution of the items within the three dimensions is comparable with the original questionnaire. All three parts of TAPES-R showed high reliability; where Cronbach’s α were .892, .894, and .873 respectively.

 

Conclusion: This study found that the Arabic version of TAPES-R represents a valid and reliable tool.

 

Limitations: The questionnaire is designed to be emailed or posted, but the majority of the amputee population in Jordan did not have these services, so direct contact with each participant was necessary.

 

 

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

Unmet needs and use of assistive products in two districts of Bangladesh: Findings from a household survey

PRYOR, Wesley
NGUYEN, Liem
ISLAM, Qumrun Naher
JALAL, Faruk, Ahmed
MANJULA, Marella
December 2018

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Access to assistive products (AP) is an under-researched public health issue. Using an adaptation of a draft World Health Organization tool—the ‘Assistive Technology Assessment—Needs (ATA-N)’ for measuring unmet needs and use of AP, we aimed to understand characteristics of AP users, self-reported needs and unmet needs for AP, and current access patterns in Bangladesh. The ATA-N was incorporated in a Rapid Assessment of Disability (RAD), a population-based survey to estimate prevalence and correlates of disability. In each of two unions of Kurigram and Narsingdi districts, 60 clusters of 50 people each aged two years and older were selected using a two-staged cluster random sampling process, of whom, 4250 (59% Female; 41% Male) were adults, including 333 using AP. We estimate 7.1% of the studied population used any AP. AP use is positively associated with age and self-reported functional difficulty. The proportion of people using AP is higher for mobility than for sensory and cognitive difficulties. Of all people with any functional difficulty, 71% self-reported an unmet need for AP. Most products were home or self-made, at low cost, but provided benefits. Needs and unmet needs for AP are high, especially for people with greater functional difficulties. Assessing unmet needs for AP revealed important barriers to scale that can inform policy and practice.

Int. J. Environ. Res. Public Health 2018, 15(12), 2901;
doi:10.3390/ijerph15122901

Using concept mapping to develop a human rights based indicator framework to assess country efforts to strengthen rehabilitation provision and policy: the Rehabilitation System Diagnosis and Dialogue framework (RESYST)

SKEMPES, Dimitrios
et al
October 2018

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The process of developing an expert guided indicator framework to assess governments’ efforts and progress in strengthening rehabilitation in line with the Convention on the Rights of Persons with Disabilities is described.  A systems methodology - concept mapping - was used to capture, aggregate and confirm the knowledge of diverse stakeholders on measures thought to be useful for monitoring the implementation of the Convention with respect to health related rehabilitation. Fifty-six individuals generated a list of 107 indicators through online brainstorming which were subsequently sorted by 37 experts from the original panel into non overlapping categories. Forty-one participants rated the indicators for importance and feasibility. Multivariate statistical techniques where used to explore patterns and themes in the data and create the indicators’ organizing framework which was verified and interpreted by a select number of participants.

 

Globalization and Health (2018) 14:96
https://doi.org/10.1186/s12992-018-0410-5

Effect of Abacus Training on Numerical Ability of Students with Hearing Loss

JADHAV, Atul Kaluram
GATHOO, Varsha Shrikant
2018

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Purpose: The study focussed on the effect of Abacus training on numerical ability (comprising of counting and mathematical operations) of children with hearing loss.

 

Method: 90 students with hearing loss were sampled from 6 special schools in Mumbai, India. A quasi- experimental study was employed using two group pre-test and post-test design. Data were collected using the Numerical Ability Test (NAT) as an instrument. Six null hypotheses based on the objectives were formulated and tested at 0.05 level of significance using t-Test - Assuming Equal Variances.

 

Results: The findings revealed that the experimental group which was instructed through Abacus showed higher proficiency in numerical ability as compared to the control group instructed through the conventional method. Gender as a variable seems to influence the mean achievement of numerical ability of students with hearing loss. While girls and boys did not differ in simple tasks such as counting, boys were found to be better in mathematical operations and overall numerical ability.

 

Conclusions: The Abacus teaching method results in higher mathematical achievements among students with hearing loss. Gender also plays an important role in mathematical learning, as evidenced by boys demonstrating more numerical ability than girls in the study sample.

Exploring the links between water, sanitation and hygiene and disability; Results from a case-control study in Guatemala

KUPER, Hannah
et al
June 2018

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A case-control study was conducted, nested within a national survey. The study included 707 people with disabilities, and 465 age- and sex-matched controls without disabilities. Participants reported on WASH access at the household and individual level. A sub-set of 121 cases and 104 controls completed a newly designed, in-depth WASH questionnaire.

Severe-to-profound hearing impairment: demographic data, gender differences and benefits of audiological rehabilitation

TURUNEN-TAHERI, Satu
CARLSSON, Per-Inge
JOHNSON, Ann-Christin
HELLSTROM, Sten
June 2018

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Purpose: The purpose of this study was to identify and report demographic data of patients with severe-to-profound hearing loss, assess participation in audiological rehabilitation and analyze the benefits of various rehabilitation methods.

 

Materials and methods: Data on 4286 patients with severe-to-profound hearing impairments registered in the Swedish Quality Register of Otorhinolaryngology over a period from 2006–2015 were studied. Demographic data, gender differences, audiological rehabilitation and benefits of the rehabilitation were analyzed.

 

Results: Group rehabilitation and visits to a hearing rehabilitation educator provided the most benefits in audiological rehabilitation. Only 40.5% of the patients received extended audiological rehabilitation, of which 54.5% were women. A total of 9.5% of patients participated in group rehabilitation, with 59.5% being women. Women also visited technicians, welfare officers, hearing rehabilitation educators, psychologists and physicians and received communication rehabilitation in a group and fit with cochlea implants significantly more often than did men.

 

Conclusions: The study emphasizes the importance of being given the opportunity to participate in group rehabilitation and meet a hearing rehabilitation educator to experience the benefits of hearing rehabilitation. There is a need to offer extended audiological rehabilitation, especially in terms of gender differences, to provide the same impact for women and men.

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