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Kindergarten Redshirting: Implications for Children with Disabilities

SANDS, Michelle M
MONDA-AMAYA, Lisa
MEADAN, Hedda
2021

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The purpose of this paper is to explore issues and concerns related to academic redshirting in kindergarten and to discuss implications of this practice for children with disabilities. Although parents cite a variety of reasons for redshirting their child, only limited evidence of academic or social benefit can be found. A search was conducted to identify studies relevant to academic redshirting and inclusive of children with disabilities published within the past 20 years, and 17 articles were identified related to the topic. From these articles, three central topics emerged: (a) prevalence, predictors, or parent motivations for kindergarten redshirting, (b) the impact of redshirting on academic achievement and post-secondary outcomes, and (c) the impact of this practice on a child’s behavior. While assumptions can be made based on the research conducted using a general education population, the impact of kindergarten redshirting on the success of children with disabilities is unclear due to the limited amount of research that currently exists. Implications for children with disabilities are discussed.

Catalysing AT access: Scaling rehabilitative services and increasing access to AT in Kenya

CLINTON HEALTH ACCESS INITIATIVE (CHAI)
January 2021

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It is estimated that about 100,000 people need a wheelchair in Kenya annually. Across the 47 counties in Kenya, anecdotal evidence showed that health centres and access points for rehabilitative services are not evenly distributed, appropriately staffed, and sufficiently equipped. The situational analysis showed that Kenya’s access challenges are driven by a policy gap, limited service points with few trained personnel, fragmented delivery landscape, no national specifications, standards or supply chain and limited financing of rehabilitative services and wheelchairs.

Education, girl, disability: an equation to solve. Ensuring the right to education for girls with disabilities in the Sahel

HUMANITY & INCLUSION (HI)
January 2021

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Most girls with disabilities do not have the opportunity to access education and to thrive in school. They are exposed to multiple  discrimination owing to their identity as girls and as children with disabilities. Comprehensive measures are needed to ensure their right to inclusive and quality education.

The factsheet builds on the findings of a research conducted by Humanity & Inclusion in Burkina Faso, Mali, and Niger and conveys messages and recommendations aiming to inspire action and thus improve educational opportunities for girls with disabilities.

Key recommendations so that girls with disabilities are not left behind are made to governments, donors and civil society organisations

Altered cervical posture kinematics imposed by heavy school backpack loading: A literature synopsis (2009–2019)

ELLAPEN, Terry J
PAUL, Yvonne
HAMMILL, Henriëtte V
SWANEPOEL, Mariëtte
2021

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Background: Habitual school backpack carriage causes neuro-musculoskeletal vertebral, shoulder and hand pain; deviated posture compromised cardiopulmonary function and proprioception.

 

Objective: Present a novel literature summary of the influence of backpack carriage associated with deviated cervical posture and compromised pulmonary function.

 

Method: An electronic literature appraisal adopting the Preferred Reporting Items for Systematic Reviews, using Google Scholar, Science Direct, EMBASE, AMED, OVID, PubMed and Sabinet search engines, was instituted during 2009–2019. Key search words: schoolbag, backpack, carriage, cervical posture and children. The quality of the studies was assessed using the Downs and Black Appraisal Scale.

 

Results: 583 records were initially identified which was reduced to 14 experimental and observational studies. A total of 1061 participants were included across the 14 studies, with an average age of 11.5 ± 1.3 years, body mass of 37.8 ± 6.6 kilograms (kg), height of 1.41 ± 0.05 meters (m), backpack mass of 5.2 ± 0.9 kg and percentage backpack mass to child’s body mass of 13.75%. The studies mean rating according to the Downs and Black Appraisal Scale was 76.3%. The average craniovertebral angle (CVA) was 53.9° ± 14.6° whilst standing without carrying a backpack was reduced to 50.4° ± 16.4° when loaded (p < 0.05). Backpack loads carried varied from 5% – 30% of the participant’s body mass that produced a mean CVA decline of 3.5°.

 

Conclusion: Backpack carriage alters cervical posture, resulting in smaller CVA and compromised pulmonary function. There is no consensus of the precise backpack mass that initiates postural changes. Girls’ posture begin changes when carrying lighter backpacks as compared to boys of the same age strata.

Using selected behaviour modification practices to enhance reinforcement of reading abilities among dyslexic learners in Kenya

OOKO, Pamela A
ALOKA , Peter J O
2021

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Background: Dyslexic learners have difficulties in accurate and fluent word recognition and poor spelling and decoding abilities.

 

Objective: The present study investigated the use of selected behaviour modification practices to enhance reinforcement of reading abilities amongst dyslexic learners in primary schools in Kenya.

 

Methods: The Solomon four research design was adopted. A sample size of 229 dyslexic learners in four selected schools was obtained using purposive sampling technique. The tools used were the Bangor Dyslexia Test and a short reading comprehension test. Internal validity of the constructs was tested using the Kaiser–Meyer–Oklin measure of sampling adequacy (KMO Index) and the Bartlett’s test of sphericity. The reliability of the questionnaires was ascertained using Cronbach’s alpha and internal consistencies of 0.673–0.807 were reported.

 

Results: The findings reported a statistical significant difference between pre-test and post-test scores of the experiment group 1, t (48) = –15.059, p < 0.01, implying that a significant effect was found in the use of behaviour modification strategies in improving learner English language reading skills. The regression model explained 54.7% (R2 = 0.547) of the variability in the level of English language reading abilities amongst primary school learners with dyslexia.

 

Conclusion: The study concludes that coaching behaviour modification practice had the highest influence on English language reading abilities as compared to prompting, shaping and modelling practices. The study recommended training of teachers on the use of behaviour modification practices to improve dyslexic learners’ reading ability.

 

Cognitive behaviour therapy-based early intervention and prevention programme for anxiety in South African children with visual impairments

VISAGIE, Lisa
LOXTON, Helene
SWARTZ, Leslie
STALLARD, Paul
2021

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Background: Anxiety is the most common psychological difficulty reported by youth worldwide and may also be a significant problem for children with visual impairments. Cognitive behaviour therapy (CBT) interventions have proven to be successful in treating childhood anxiety; however, mostly these are not suitable for children with visual impairments, as the materials used are not sufficiently accessible to this population.

 

Objectives: The present study was motivated by the dearth of research on this topic and aimed to examine the effects of a specifically tailored, group-based, universally delivered, CBT intervention for anxiety in children with visual impairments and to examine the influence of three predictor variables (i.e. age, gender and level of visual impairment) on prevention effects.

 

Method: A randomised wait-list control group design with pre-, post- and follow-up intervention measures was employed. The final sample of 52 children (aged 9–14) with varying degrees of visual impairment received the anxiety intervention. Participants were followed over a course of 10 months during which their anxiety symptoms were assessed quantitatively at four time points (T1–T4).

 

Results: The results indicated that the anxiety intervention did not significantly decrease symptoms of anxiety within the intervention groups. However, the intervention appeared beneficial for girls, younger children and legally blind participants.

 

Conclusion: This study demonstrated how CBT interventions can be adapted for use in children with visual impairments. Results obtained provide a foundation upon which future updated anxiety intervention programmes can be built, meeting the need for further research in this area.

“It’s not a simple answer.” A qualitative studyto explore how healthcare providers can bestsupport families with a child with autism spectrumdisorder and overweight or obesity

MCPHERSON, Amy C
PEREZ, Arnaldo
BUCHHOLZ, Annick
FORHAN, Mary
BALL, Geoff D C
January 2021

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Purpose: This qualitative study aimed to explore the experiences of parents supporting their child with Autism Spectrum Disorder (ASD) and overweight or obesity (OW/OB), including their weight management support needs.

 

Methods: Interview transcripts were analysed using inductive thematic analysis. Nine parents (n = 9 mothers) of ten children with ASD (7 males, 3 females) participated in individual semi-structured interviews.

 

Results: The three themes developed were: (1) Our journey to obtain weight management support; (2) I need real-world solutions; and (3) The what, who and how of our weight management needs. Parents reported being proactive in seeking weight management support for their child but were disappointed with the services offered. Resources were not tailored to the child’s complex nutrition and behavioural issues or their abilities and functioning. A multidisciplinary approach that integrated both disability and weight management expertise was desired, but not experienced. A range of formal and informal programs were recommended.

 

Conclusion: This study provides a call to action for supports that ensure children with ASD and OW/OB receive integrated, individualised support to maximise their health and wellness.

Let’s not go back to ‘normal’! lessons from COVID-19 for professionals working in childhood disability

ROSENBAUM, Peter L
SILVA, Mindy
CAMDEN, Chantal
January 2021

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Purpose: The worldwide COVID-19 pandemic has changed almost all aspects of our lives, and the field of childhood disability is no exception.

 

Methods: This article is based on an invited lecture by the first author at a conference–the eHealth Summit (“Pediatric Rehabilitation in a Digital Space”)–organized by the other authors and their colleagues in May 2020.

 

Results: The first author offers his own experiences and perspectives, supplemented by comments and observations contributed by many of the 9000+ attendees at this talk, as curated by the second and third authors. The basic messages are that while life for families of children with developmental disabilities, and for service providers who work with them, is significantly altered, many important lessons are being learned.

 

Conclusions: The comments from participants support the currency of the ideas that were presented, and encourage childhood disability professionals to reflect on what we are learning, so that we can seize the opportunities they afford to do things differently–and we believe better–moving forward.

The impact of COVID-19 measures on children with disabilities and their families in Uganda

MBAZZI, Femke Bannink
NALUGYA, Ruth
KAWESA, Elizabeth
NIMUSIIMA, Claire
KING, Rachel
VAN HOVE, Geert
SEELEY, Janet
2021

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To understand the impact of the COVID-19 public health response on families of children with disabilities in Central Uganda we conducted phone interviews with parents and children during the first 5 months of the outbreak (March - July 2020). Most parents and children were well informed about COVID-19 and were keen to adhere to government prevention measures. The majority said lock-down measures had a negative effect on their mental and physical health, social life, finances, education and food security. Access to medical services and medication for chronic illness had been limited or absent due to restrictions in travel, some facilities restricting access, and limited financial resources. The majority of parents reported loss of work which resulted in difficulties in finding enough food and paying rent. Parents worried about children missing education and friends. We suggest greater attention to children with disabilities and their families when implementing mitigating and long-term responses.

Impact of Covid-19 on people with disabilities in Albania

LAHE, Alma
SHEHU, Arlinda
January 2021

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This report aims to assess the level of access that People with Disabilities have to services and institutions during the pandemic period, as well as to analyze their economic and financial needs to cope with the consequences of the crisis caused by COVID-19.

The survey was conducted in the form of a quantitative field survey. 360 individuals participated in the survey: 199, or 55.3%, of the participants were people with disabilities (PWDs) while the remaining 161 persons, or 44.7%, were guardians or parents of a person with disabilities. The survey was conducted in all 6 districts of the country. The questionnaire was designed to gather information on the perceptions, attitudes, behaviors and experiences of people with disabilities during the COVID-19 period.

Managing the New Normal for Persons with Disabilities

LEONARD CHESHIRE DISABILITY PHILIPPINES FOUNDATION (LCDPF)
January 2021

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A discussion on how persons with disabilities can manage the new normal. Learn about the safety protocols, the do's and don'ts, and other activities to help manage the stress and anxiety caused by the quarantine and COVID-19.

This event was made possible through the Voice LCDPFI project in partnership with the Las Pinas Persons with Disabilities Federation, Inc

Minimum standards for camp management

CAMP COORDINATION AND CAMP MANAGMENT (CCCM) CLUSTER
2021

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In a humanitarian crisis, camps and camp-like settings are often the only places where internally displaced persons (IDPs) and refugees can seek protection and assistance.


These Minimum Standards for Camp Management describe the minimum actions needed to support meaningful engagement within a site as well as planning and coordination between sectors and agencies. They aim to clarify the role of any site management agency working on a daily basis in humanitarian settings and to set out minimum levels of quality of that work. Although called the Minimum Standards for Camp Management, the standards apply to all contexts where displaced people seek shelter, protection and other support, and the term “site” is used unless a specific camp context is meant.

 

Annex 1 provides a disability inclusion monitoring checklist. This checklist is not exhaustive nor meant to replace participatory approaches but can be used as a complementary tool by site managers willing to assess the overall inclusiveness of a site, or as a tool to support the development of an inclusive strategy for persons with disabilities.

Disability inclusion in climate change programming in the Middle East

KETT, Maria
MEANEY-DAVIS, Jessie
January 2021

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This document provides guidance on how to incorporate disability inclusion within climate change programming in Iraq, Jordan, Lebanon, Occupied Palestinian Territories (OPTs), Syria, Turkey and Yemen. It is intended to inform the UK's Foreign, Commonwealth and Development Office’s (FCDO) climate change programming in the Middle East and North Africa (MENA) region. 

World Report on Hearing

WORLD HEALTH ORGANISATION (WHO)
2021

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The World Report on Hearing (WRH) has been developed in response to the World Health Assembly resolution (WHA70.13), adopted in 2017 as a means of providing guidance for Member States to integrate ear and hearing care into their national health plans.

Based on the best available evidence, this report presents epidemiological and financial data on hearing loss; outlines available cost-effective solutions and sets the way forward through ‘Integrated people-centered ear and hearing care’ (IPC-EHC). The report proposes a set of key H.E.A.R.I.N.G. interventions that must be delivered through a strengthened health system to realize the vision of IPC-EHC. 

The WRH was developed in collaboration with experts and stakeholders in the field of ear and hearing care who informed the report’s strategic direction and ensured that it reflects a range of cultural contexts and approaches to hearing care. The report is global in its reach while keeping a special focus on low- and middle-income countries, where the number of people with hearing loss is not matched by the availability of services and resources.

Determining Frailty in People With IntellectualDisabilities in the COVID-19 Pandemic

FESTEN, Dederieke A M
SCHOUFOUR, Josje D
HILGENKAMP, Thessa I M
OPPEWAL, Alyt
2021

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Background: Across the world, frailty is part of the guidelines that are being developed in the COVID-19 pandemic for triaging in crisis situations. The Clinical Frailty Scale (CFS) evaluates the ability to perform daily tasks to identify frail individuals, potentially excluding those from intensive care (IC) treatment. Individuals with intellectual disabilities (ID) experience varying degrees of dependence, distinct from age-related physical deterioration. Using the CFS for triage in crisis situations could potentially unjustiably exclude individuals with ID from IC treatment. Our objective was to compare the classication of individuals with ID
into different frailty categories based on the CFS and the well-studied ID-frailty index and to determine suitability of CFS for evaluation of frailty in individuals with ID during the COVID-19 pandemic.


Methods: This retrospective analysis of the observational healthy aging and intellectual disabilities (HA-ID) study included 982 individuals with ID of ≥50 years, who were classied according to the CFS and the ID-frailty index.


Results: Of the cohort of 982 older adults with ID, 626 (63.7%) would be classifed as moderately frail (CFS score 6), but 92% of this group is not moderately frail according to the ID-frailty index. Furthermore, 199 (20.3%) would be classied as at least severely frail (CFS score 7–9), but 74.9% of this group is not severely frail according to the ID-frailty index. Overall, 730 out of 982 (74.9%) individuals would be incorrectly classied by the CFS as too frail to have a good probability of survival. The ID-frailty index predicts mortality better than the CFS in individuals with ID.


Conclusions: Our results show the CFS is not suitable to evaluate frailty in individuals with ID, with potential dramatic consequences for triage and decision-making during the COVID-19 pandemic. We strongly recommend using the ID-frailty index when assessing probability of survival for individuals with ID.

What Constitutes Good Quality End-of-Life Care? Perspectives of People With Intellectual Disabilities and Their Families

CITHAMBARM, Kumaresan
DUFFY, Mel
COURTNEY, Eileen
2021

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Background: Due to increased life expectancy, just as with the general population, people with intellectual disabilities are experiencing, and dying from, chronic and life-limiting conditions. This has led to an increase in the need for end-of-life care for people with intellectual disabilities. However, there is limited evidence as to what constitutes good end-of-life care from the perspectives of people with intellectual disabilities and their family members.


Methods: The study reported here aimed to nd out the care needs of people with intellectual disabilities at the end of life in Ireland. A grounded theory approach was employed to explore the perspectives of the participants. After obtaining appropriate ethical approval, 19 semi-structured individual interviews were carried out with 11 people with mild and moderate intellectual disabilities and eight family members to collect data which was subsequently analyzed through constant comparative analysis.


Results: The views of the participants suggested that providing personal care while vulnerable and dying, being with and communicating with the dying person, and meeting their spiritual needs, were considered as being essential at the end of life for people with intellectual disabilities.


Conclusion: The fndings from this study have shown that people with intellectual disabilities can engage with those around them and demonstrate how they would like to be cared for, and discuss what would be considered as being good care at the end of life.

Integrated Emotion-Oriented Care for Older People With ID: Defining and Understanding Intervention Components of a Person-Centered Approach

THALEN, Marloes
VAN OORSOUW, Wietske M W J
VOLKERS, Karin M
TAMINIAU, Elsbeth F
EMBREGTS, Petri J C M
2021

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An increase in descriptive evidence regarding person-centered approaches for older people with intellectual disability (ID) is important, due to increased life expectancy and the present lack of sufficiently underpinned interventions. This is especially true of interventions designed to increase well-being and quality of life. A specific Dutch example is the Integrated Emotion-Oriented Care approach. Despite its status as a good practice, its effectiveness has not yet been proved, nor has descriptive evidence been made available. The primary aims of this qualitative study are to identify the intervention components, to provide demonstrative illustrations and to gain an in-depth understanding of the use of these components in the day-to-day support of older people with ID. A content analysis of five key documents was carried out. Five semi-structured interviews were then conducted with early adopters, followed by a concept mapping study with daily users. The final stage in the data collection process was a series of five focus-group interviews with experts and experienced support staff. The five intervention components of Integrated Emotion-Oriented Care for older people with ID have been systematically identified and described in detail in five narrative summaries drawn up in collaboration with early adopters, experts and experienced support staff. This study provides valuable insights that offer descriptive evidence for Integrated Emotion-Oriented Care in the care for older people with ID. Both implications and possible opportunities for future research are discussed.

Depression and Anxiety Symptoms in UK Thalidomide Survivors: A Brief Survey

NEWBRONNER, Elizabeth
WADMAN, Ruth
2021

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Between 1958 and 1961, the drug Thalidomide was prescribed in the UK as a treatment for morning sickness. It caused severe birth defects. Thalidomide survivors are now experiencing a range of secondary health problems, including depression and anxiety. Internationally, it is estimated that 40% to 50% of Thalidomide survivors have recently experienced common mental health problems. The aim of this study was to gather information about the pattern of symptoms of depression and anxiety amongst UK Thalidomide survivors. A cross-sectional postal survey of 182 UK Thalidomide survivors, which used Patient Health Questionnaire (PHQ-9) and General Anxiety Disorder Scale (GAD-7) to measure self-reported depression and anxiety, was conducted. Data were first analysed using descriptive statistics. A point-biserial correlation was used to examine whether being unable to work was associated with higher depression and anxiety scores. Prevalence of all levels of depression and anxiety was higher amongst the Thalidomide survivors than the general UK population but broadly similar to other groups of adults with disabling conditions. Being unable to work was associated with higher depression and anxiety scores. More research is needed to understand the relationship between early acquired physical disability and depression, in particular the implications, over the life course, of secondary health problems and changing social roles.

Enhancing Function, Fun and Participation with Assistive Devices, Adaptive Positioning, and Augmented Mobility for Young Children with Infantile-Onset Spinal Muscular Atrophy: A Scoping Review and Illustrative Case Report

LIVINGSTONE, Roslyn
PALEG, Ginny
2021

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Recent advances in medical interventions have changed the prognosis for children with infantile-onset spinal muscular atrophy (SMA-1); however, little has been published regarding rehabilitation management. A rapid scoping review was conducted in November 2020 using Medline and CINAHL databases. Evidence supporting use of assistive devices and equipment to enhance participation, mobility, function, and posture in lying, sitting, and standing positions was sought. From 239 articles, only five studies (describing use of augmentative communication, manual and power mobility, supported standing and orthotic devices) met inclusion criteria. Results are presented alongside a case report of a 5-year-old boy (treated with Nusinersen since 7 months-of-age) who uses a variety of devices to enhance his activity and participation in family life. While reclined and tilted sitting positions as well as power mobility were previously considered for children with SMA-1, this child has progressed to supported upright standing, self-propelling a lightweight manual wheelchair indoors, communicating using multiple methods and taking steps in a dynamic mobility device. Power mobility was introduced in a switch-adapted cart at 11 months and he was independently exploring indoors and outside in his power wheelchair before 20 months. Research evidence is limited, but alongside the case report highlights the importance of a comprehensive and proactive approach to enhancing function, fun and participation with family and friends through adaptive equipment for children with significant and life-limiting disabilities.

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