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.
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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.
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.
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.
This article examines the role of advocacy organizations and their use of social media within the field of disability in Sweden. How do the organizations negotiate digital media, and what are the (intentional or unintentional) consequences related to the use of social media? With focus on the representatives of advocacy organizations, we study how they reflect and act in order to balance various motives, and what challenges and ambiguities that arise. On one hand, there is a perceived need to be online and communicate with members and the surrounding society. On the other hand, digital communication induces a divide between those who have the resources to take part in such communication, and those who do not – in terms of digital competence, economy, age, cognitive abilities, technical equipment and digital connection. The heterogeneity of resources and target groups inevitably challenges both the ideals of inclusion and intentions of advocacy organizations.
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.
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.
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.
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.
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.
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 unjustiably exclude individuals with ID from IC treatment. Our objective was to compare the classication 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 classied 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 classied 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 classied 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.
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.
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.
Purpose: This study aimed at understanding the perceptions of people with physical disabilities regarding playing Light Volleyball (LVB), identifying the possible constraints and risks they might face while playing, and providing their suggestions for fine-tuning the Light Volleyball intervention programmes.
Method: Four focus group interviews were conducted with 17 participants who joined the Light Volleyball trial programme. The participants were 11 males and 6 females, with an average age of 53.5 years (SD=11.83 years). People with poliomyelitis (n = 15), spinal cord injury (n = 1), hearing impairment (n = 1) were included.
Results: Participants indicated improved reactivity and coordination, cooperation in team, happiness, and novelty in general as positive outcomes while playing Light Volleyball. They preferred to play in the seated position (i.e., sitting light volleyball - SLVB), and with simpler rules. They believed that their ability to play Light Volleyball was subject to their body constraints.
Conclusion: Sitting Light Volleyball can be one of the new physical activity options for future sport promotion among people with physical disabilities in the community. The effectiveness of playing Sitting Light Volleyball in enhancing health among people with physical disabilities needs to be studied in future.
Purpose: Development of Physical Therapy (PT) services for people with disability is one of the urgent challenges in the health sector in Papua New Guinea (PNG). However, information on the current status of PT services in PNG is scarce, as also is the case for the hospital-based outpatient PT services. This study aimed to describe the characteristics of outpatients receiving PT services in a provincial hospital in West New Britain (WNB) Province, PNG and to compare them with the characteristics of inpatients.
Method: This was a retrospective case study using outpatient and inpatient records. The records of clients receiving PT services as either outpatients (413 records, outpatient group) or inpatients (350 records, inpatient group) were reviewed in relation to sex, age and diagnosis. Comparisons were made between the two groups on basis of quantitative data of the two patient groups .
Results: The final analysis comprised 404 records in the outpatient group and 344 records in the inpatient group. In the outpatient group, injury and musculoskeletal disease were forming the most dominant diagnosis groups with 52.5% and 22.0%, respectively. Injury was most common in the age group 20 to 39 years and musculoskeletal diseases was most common in the age group 40 to 59 years. These two diagnosis groups and congenital malformations were significantly more represented among outpatients than among inpatients.
Conclusions: Young to middle-aged clients with injury or musculoskeletal disease were predominant among outpatient PT services as compared to inpatient services. The study findings serve to provide information on the current situation and potential needs of hospital-based outpatient PT services in one provincial hospital of PNG. These findings could be the base for planning outpatient PT service in WNB Province and PNG.
Purpose: Although leprosy is completely curable with multidrug therapy, it is unfortunate that the stigma attached to leprosy persists even today. Fear of social exclusion prevents disclosure of the disease to the family and community. This study aimed to evaluate the extent of disclosure of disease among women affected by leprosy in a tertiary referral hospital in Chhattisgarh State, India.
Method: A qualitative study was conducted with 57 women affected by leprosy who reported at a tertiary referral hospital in Champa, Chhattisgarh State. The respondents were 18 years of age or older, and had completed multidrug therapy for leprosy. They were asked whether the disclosure of disease had affected their interactions with family, neighbours and community members.
Results: Of the 57 women, 48 (84%) had disclosed their disease to their family, 17 (30%) to their neighbours and 13 (23%) to the community members. Thirty women (53%) reported that they experienced problems after revealing the ailment to their family, friends and neighbours. The qualitative analysis found that negative behaviour towards people affected by leprosy still persists in the community. Consequently, women affected by leprosy try to hide their disease due to fear of negative community reactions.
Conclusion: This study emphasises the need to spread awareness about the disease and its transmission, by educating the people affected by leprosy, their families and the community. This should be a continuous process in order to reduce or remove the stigma and discrimination against women affected by leprosy, in particular.
Purpose: This study aimed to assess the level of activity limitation, and the factors associated with it, among people affected by leprosy who were reporting at a leprosy referral centre of Purulia, in West Bengal state, India.
Method: A cross-sectional study was conducted among 358 individuals affected by leprosy. Persons recruited for this study were above 18 years of age, married, and had been diagnosed with leprosy for at least 1 year at the time of the interview. A semi-structured questionnaire was used to gather information about the respondents’ socio-economic and disease status. The Screening of Activity Limitation and Safety Awareness (SALSA) Scale was used to measure activity limitation.
Results: Of the 358 respondents, 59% were male, 60% were between 18 and 45 years of age, and 42% were illiterate. About 144 or 40% of the respondents had Grade 2 disability and 60% had disease duration of more than 3 years. There were 229 individuals (64%) who had no limitation in activities, 103 (29%) had mild limitation and 26 (7%) had moderate to severe limitation in activities. There is a significant association between gender, age, occupation, physical disability and disease duration with activity limitation.
Conclusion: It appears that limitations in activities among persons affected by leprosy are associated with being a woman, ahousewife, an aged person, and with longer disease duration. The physical disability was intrinsically associated with limitation in activities.
Purpose: The study aimed to identify the effects of the CBR programme on parents of children with Cerebral Palsy, living in Karnataka State, India. It also tried to find the challenges and improvements needed to make the CBR programme more effective.
Method: A cross-sectional, descriptive study design was used to collect a sample of 100 parents of children with Cerebral Palsy, with GMFCS levels IV and V. The sample was drawn from various communities in Bangalore, Davanagere and Bijapur, where the services of The Association of People with Disability are available. Face-to-face interviews were conducted with the study subjects. Data was analysed by SPSS using descriptive and inferential statistics.
Results: It was observed that the CBR programme had a positive effect on parents’ health, knowledge, social lives and empowerment. A binary logistic regression was done to find the relationship between health, knowledge, social lives and assistive devices use. A strong association was found between all the areas (p=.001) except GMFCS and assistive devices use (p=.004) at 95% CI. The odds ratios between them were greater than 1 and showed the strong positive effect of the CBR programme on parents.
Conclusion: The CBR programme not only has a positive effect on children with Cerebral Palsy, but also plays an important role in parents’ lives. It contributes in a positive way to parents’ overall activity.
Purpose: Disability affects upwards of one billion people worldwide, the majority of whom live in low- and middle-income countries. Based on survey data from Bangladesh, the aim of the study is to contribute to an improved understanding of the experiences of people with disabilities in terms of discrimination, health, and sociodemographic indicators.
Method: A descriptive analysis of data is presented, from a survey implemented in 2016 on a sample of adult persons with disabilities from 18 districts in Bangladesh (n=1,900). The summary statistics of main indicators and correlation analysis of key variables are given.
Results: Women comprised around 40% of the sample. The mean age was 36 years (minimum 18 years and maximum 55 years). Women had lower socioeconomic status than men (p<0, 01), were less likely to be well-educated or employed, had worse self-assessed health (p<0, 05), and were less likely to be able to read and write. Men were more likely to have a physical disability than women (p<0, 01). Both women and men reported unmet needs in terms of access to assistive products and not receiving a benefit. Around 40 % of the sample reported having experienced discrimination, with no significant differences between women and men.
Conclusion and Implications: Many women and men with disability experience some forms of discrimination, including in matters pertaining to healthcare, education, and employment. Such experiences may have a negative impact on their life chances. However, women and men with a disability differ in several important respects, both in terms of socioeconomic status and types of disability. Such differences need to be considered for effective and equitable policy development.
Appropriate wheelchair provision is necessary for addressing participation barriers experienced by individuals with mobility impairments. Health care professionals involved in the wheelchair service provision process require a specific set of skills and knowledge to enable wheelchair use that meets individual posture, mobility and daily living requirements. However, inconsistencies exist in academic programmes globally about providing comprehensive education and training programmes. The planned scoping review aims to review and synthesize the global literature on wheelchair service provision education for healthcare professional students, healthcare personnel and educators offered by universities, organizations and industries.
This scoping review will be guided by the Joanna Briggs Institute (JBI) methodological framework. Comprehensive literature searches will be conducted on various global electronic databases on health to seek out how wheelchair service provision education is organized, integrated, implemented and evaluated. Two independent reviewers will perform eligibility decisions and key data extractions. Data from selected studies will be extracted and analysed using conventional content analysis. Information related to wheelchair service provision education including curriculum development, content, teaching methods, evaluation and models of integration will be synthesized.
Implications and dissemination
The planned scoping review will be the first to examine all aspects of wheelchair service provision education across professionals, settings and countries. We anticipate that results will inform the content of a Wheelchair Educators’ Package, and if appropriate, a follow-up systematic review. An article reporting the results of the scoping review will be submitted for publication to a scientific journal.