Building on the Salamanca Statement from 1994, the United Nations Sustainability Development Goals 2030 embraces inclusion for children in early childhood education. The European Agency for Special Needs and Inclusive Education in 2015–2017 completed a project on inclusive early childhood education, focusing on structures, processes, and outcomes that ensure a systemic approach to high-quality Inclusive Early Childhood Education (IECE). An ecosystem model of IECE was developed with a self-reflection tool for improving inclusion. This study’s aim was to investigate practitioners’ perspective on the inclusive processes and supportive structures defined in the ecosystem model, to contribute to a deeper understanding of how inclusive practice might be enabled and how barriers for inclusion can be removed. The self-reflection tool was administered in a heterogeneous municipality in Sweden, where inclusive settings are standard. Documentation from approximately 70 teachers on 27 teams was received. The documentation was analysed with qualitative content analysis based on the ecosystem model. The results showed a strong emphasis on group-related processes, whereas data on individual-related processes were scarce. This one-sided focus on the group level might endanger the inclusive processes and outcomes concerning the individual child.
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Purpose: Children and adolescents with cerebral palsy often have impaired hand function. This makes it difficult for them to deal with everyday activities. The aim of the study was to explore the experiences of children and adolescents with unilateral spastic cerebral palsy when it comes to learning and dealing with activities requiring bimanual use.
Method: Ten participants, attending mainstream schools, with unilateral spastic cerebral palsy (10–18 years, MACS-level I-III) took part in semi-structured interviews. Qualitative analysis with verbatim transcripts were analysed using a Grounded Theory approach.
Results: The learning of bimanual activities was described as a process taking place in interaction with the dynamics of everyday situations. Five categories describing the participants experiences emerged: “Reaching a point where you want to learn”, “Awareness and acceptance of your own abilities”, “Dealing with the boundaries of the disability”, “Dealing with the impact of people around you” and “Strategies for learning”. A multi-dimensional theory was derived, summarising how the participants learned bimanual activities in daily life.
Conclusions: Children and adolescents with unilateral spastic cerebral palsy express that the process of learning bimanual activities can only take place when it fits in with life as it unfolds. Thus, they have to adapt to a changing context and their own developing skills.
Purpose: To investigate access to basic human rights such as health, a standard of living adequate for health, education, work, marrying and establishing a family, and voting for prosthetic and orthotic users with lower limb disabilities in Malawi.
Materials and methods: A cross-sectional design and a questionnaire were used to collect data from 83 participants.
Results: Most participants reported their overall physical and mental health as good (60 [72%] and 50 [60%], respectively) and said they could access medical care (69 [83%]). Fifty (60%) participants had access to food, 72 (87%) had access to basic water, and 55 (66%) lived in housing adequate for their health. Most participants had studied in school (74 [89%]) but only 27 (33%) of the participants were working. Forty-three (52%) were married and 53 (64%) had children. Seventy-six (92%) participants could vote if they wished.
Conclusions: Rurality and high costs of transport and medication increase the barriers to accessing several basic human rights for people with lower limb physical disabilities. Interventions to target these barriers and increase access to secondary school, employment, and income could improve health equity for people with physical disabilities in Malawi and similar contexts.
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.
Aim: Participation of adolescents with autism spectrum disorder hardly occurs in settings outside of home and school. Little is known about how their participation is influenced by environmental factors. This study explored how and why adolescents with autism spectrum disorder perceive aspects of their environment as facilitators or barriers to their participation outside of home and school.
Method: This explanatory case study explored the participation experiences of adolescents with autism spectrum disorder (15–21 years) from Zurich and surroundings with in-depth interviews and photo-elicitation, using photos made by the participants during activities outside of home and school. Data was analysed with a 7-step procedure.
Result: The presence of two main themes seemed necessary to facilitate participation outside of home and school: “environmental prerequisites to attend activities”, which consists of five subthemes, such as “the company of trusted persons” and “the provision of knowledge and information”, and “social interchange and engagement”, which consists of three subthemes and describes how actual involvement can be supported.
Conclusion: Our findings highlight the influence of trusted persons on adolescents with autism spectrum disorder, and the need to extend the support network for these adolescents to other individuals, services and society so that their participation in activities can be encouraged.
Objective: To investigate the impact of familial acquired brain injury on children and adult family members, including their views of the support provided, gaps and recommendations for future interventions.
Research design: Qualitative exploratory study using a phenomenological approach.
Method: Twenty-six participants were recruited from 12 families across the South AustralianBrain Injury Rehabilitation Service (SABIRS) and external community brain injury agencies in Adelaide, South Australia. Sixteen children aged 5–18 participated through ten semi-structured interviews. Ten adults attended six interviews. Following transcription and member checking, thematic analyses occurred with pooled data from all interviews undergoing open, axial and selective coding.
Main results: Analyses revealed four main themes: (1) help parents help their children, (2) improve family functioning by giving children meaningful roles, (3) staff: don’t leave children “in the dark,” and (4) support for children is not one size fits all.
Conclusions: Children and adults reported significant gaps in support offered by acute and brain injury services after familial acquired brain injury. Children and adults need to receive intervention in addition to the patient. To fill identified gaps, participants recommended more input by clinical staff including the use of technology; specifically, the development of age-appropriate applications, educational videos and interactive games.
Purpose: Translating the Neck Disability Index (NDI) into the Malay language (NDI-M); evaluation of psychometric properties in patients with neck pain.
Methods: The NDI-M was translated according to established guidelines. In the first visit, 120 participants completed the NDI-M, visual analogue scale (VAS) for pain and demographic details. 98 participants returned to complete similar questionnaires and the Global Rating of Change (GRoC) scale. The NDI-M was evaluated for internal consistency, test-retest reliability, content validity, construct validity and responsiveness.
Results: The NDI-M demonstrated excellent internal consistency (Cronbach’s α = 0.84) and good test-retest reliability (ICC2,1 = 0.79). Content validity was confirmed with no floor or ceiling effects. Construct validity was established revealing three-factor subscales explaining 68% of the total variance. The NDI-M showed a moderate correlation with VAS (Rp = 0.49, p < 0.001). Regarding responsiveness, a moderate correlation between NDI-M change scores and VAS change scores was found (Rp = 0.40, p < 0.001). However, there was no significant correlation between NDI-M with GRoC (Rs = 0.11, p = 0.27).
Conclusions: The NDI-M is a reliable and valid tool to measure functional outcomes in patients with neck pain. It is responsive in detecting changes in pain intensity during a patient’s rehabilitation journey.
Invisibility of children with disabilities in data on educational access and learning is a key policy challenge for tracking progress towards the Sustainable Development Goals. In this article, we report findings from a household survey undertaken in rural Punjab, Pakistan. These data enable us to identify the extent to which children with disabilities are in school and learning the basics in literacy and numeracy. We find that, perhaps contrary to expectations, many of these children in this context are in mainstream (government and private) schools, although their chances of being in school are lower than their peers. We further find that overall levels of literacy and numeracy are low, even more so for children with disabilities. Our findings corroborate recent research from other countries. The paper highlights important lessons for the policy which are of relevance to other low-income contexts.
Issues: The International Association for the Scientific Study of Intellectual and Developmental Disabilities (IASSIDD) is an international group of researchers, clinicians, students, parents, and self-advocates that promotes worldwide research and exchange of information on intellectual and developmental disabilities. IASSIDD recently developed a policy statement regarding their opposition to the use of contingent electric skin shock (CESS) with individuals with challenging behavior and intellectual and developmental disabilities. To support the policy, the available literature was reviewed to evaluate the efficacy, side effects, generalization, and long-term effectiveness of the procedure as an intervention for challenging behavior.
Findings: The review provides a history that demonstrates that, although CESS can decrease the frequency of challenging behavior, it comes at a cost in terms of physical and emotional side effects, and questions remain regarding the long-term effectiveness of the procedure. In addition, we raise several ethical and methodological issues that make the research on the use of CESS even more concerning.
Conclusions: Although research continues in some countries, these studies are now rare. In fact, in the United States, the Food and Drug Administration has just banned the use of such devices with individuals with self-injury and aggression. It is hoped that, because there are many other forms of treatment that have shown to be effective for severe challenging behavior, we can completely avoid the use of CESS.
Background: Persons with disabilities are generally at greater risk of experiencing violence than their peers without a disability. Within the sphere of disability, individuals with severe communication disabilities are particularly vulnerable and have an increased risk of being a victim of abuse or violence and typically turn to their country’s criminal justice system to seek justice. Unfortunately, victims with disabilities are often denied fair and equal treatment before the court. Transformative equality should be pursued when identifying accommodations in court for persons with communication disabilities, as the aim should be to enable such individuals to participate equally in court, without barriers and discrimination.
Objectives: This research aimed to identify court accommodations recommended by legal experts, which could assist individuals with severe communication disabilities in the South African court.
Method: A qualitative design was used to conduct a discussion with a panel of legal experts.
Results: Using Article 13 (Access to Justice) of the Convention on the Rights of Persons with Disabilities (CRPD) as a human rights framework, four themes were identified: equality, accommodations, participation and training of professionals.
Conclusion: Foreign and national law clearly prohibits discrimination against persons with communication disabilities because of their disability and state that they should be given fair and equal access to the court system. For transformative equality to be achieved, certain rules and laws need to be changed to include specific accommodations for persons with communication disabilities so that they may be enabled to participate effectively in court in the criminal justice system.
African Journal of Disability, Vol 9, 2020
Background: Cerebral palsy (CP) is the most common and most complex disabling disorder in children. Newly qualified therapists are expected to manage CP despite feeling inexperienced and inadequately prepared. Short postgraduate practical training courses could potentially help bridge this readiness gap. However, the value of these short courses in addressing the knowledge and experience gap is unknown.
Objectives: To establish the value of a short practical training course on the self-perceived readiness of newly qualified South African trained therapists to work with children with CP.
Method: Secondary analysis of records on therapists’ immediate evaluation of a short practical training course on CP management was completed. The analysis included records from 11 courses collected over a 2-years period (2015–2017). Paired t-tests were used to determine the change in knowledge in the quantitative questionnaire. Qualitative data were analysed inductively to determine themes.
Results: The majority of therapists had their expectations met by the course. Therapists’ self-perceived level of knowledge about various aspects of CP after the course changed significantly. Therapists appreciated the adult teaching and learning methods, conducive learning environment, the relevant and organised content and holistic approach of the course. They demonstrated readiness to adopt positive attitudes, perceptions and practice following the course.
Conclusion: A short practical postgraduate training course in CP is valuable in addressing the self-perceived lack of readiness amongst therapists with little experience in this area. It is capable of improving the knowledge and changing attitudes, perceptions and practice intentions positively, and thereby potentially improving the quality of service offered to children with CP.
African Journal of Disability, Vol 9, 2020
Diversity is a current buzzword in politics, but in the EU, people with disabilities are not achieving the gains made by women and ethnic minorities. This research examined barriers and facilitating factors through a literature review and interviews with politicians and political activists in five European countries. Six categories of barriers and facilitating factors were found: networks, recruitment and mentoring, resources (money, time and energy), the “hierarchy of impairments,” accessibility of political spaces and activities, and laws and policies. Key recommendations include removing access barriers to political participation, from voting to holding office, including physical and procedural barriers in political spaces; ensuring that equalities legislation covers politicians; eliminating barriers imposed by benefits systems; promoting direct support for political activists, candidates and office-holders with disabilities, including access to necessary services and supports; encouraging parties to recruit and mentor disabled people with leadership potential; and considering quotas and job-sharing.
- Not many disabled people are active in politics. In the EU, about 15% of people have an impairment, but only around 1% of politicians do.
- Inclusion at school and in social groups makes it easier to get into political jobs or to try to get elected.
- Some disabled political activists, volunteers, candidates and office-holders don’t get the support they need.
- Political parties can help by finding disabled people, supporting them, and helping them get involved in politics.
- Our article provides several ideas about how to make it easier for disabled people to run for office and work in politics.
This paper describes international actions to collaborate in the assistive technology (AT) arena and provides an update of programmes supporting AT globally.
The World Health Organisation (WHO) identifies the severe global uneven distribution of resources, expertise and extensive unmet need for AT, as well the optimistic substantial capability for innovations and developments in appropriate and sustainable AT design, development and delivery. Systems thinking and market shaping are identified as means to address these challenges and leverage the ingenuity and expertise of AT stakeholders.
This paper is a ‘call to action’, showcasing emerging AT networks as exemplars of a distributed, but integrated mechanism for addressing AT needs globally, and describing the Global Alliance of Assistive Technology Organisations (GAATO) as a vehicle to facilitate this global networking.
Partners in this Global Alliance aim to advance the field of assistive technology by promoting shared research, policy advocacy, educating people and organisations within and outside the field, teaching, training and knowledge transfer by pulling together broad-based membership organisations.
Fostering equity by offering the best education possible to all students is one of the main goals of inclusive schooling. One instrument to implement individualised education is individualised education planning (IEP). IEP requires cooperation between special and regular teachers. From research on school leadership it is known that leadership styles are connected to the way, school leaders use their scope of action with respect to fostering collaboration. However, little is known about the relationship between the leadership of a school, the provision of structures for collaboration, and the implementation of IEP in an inclusive context. The article focuses on the question to what extent transformational (TL) and instructional leadership (IL) are connected to the provision of structures for collaboration and how TL and IL as well as structures for collaboration relate to the implementation of IEP directly and indirectly. Based on data of N = 135 German schools, a path model was calculated. It revealed medium relations between TL, IL, and structures for collaboration as well as a medium effect from structures to collaboration on implementation of IEP. The effect from TL towards implementation of IEP was fully mediated by structures for collaboration, while the effect from IL persisted.
Purpose: To explore the experiences of persons with physical disabilities accessing and using rehabilitation services in Sierra Leone.
Materials and methods: Interviews of 38 individuals with differing physical disabilities in three locations across Sierra Leone. An inductive approach was applied, and qualitative content analysis used.
Results: Participants faced several barriers to accessing and using rehabilitation services. Six themes emerged: The initial and ongoing need for rehabilitation throughout life; challenges with the cost of rehabilitation and transportation to reach rehabilitation services; varied experiences with rehabilitation staff; coming to terms with disability and encountering stigma; the struggles without and opportunities with rehabilitation services; and limited knowledge and availability of rehabilitation services.
Conclusions: There is a continued need to address the barriers associated with the affordability of rehabilitation through the financing of rehabilitation and transportation and exploring low-cost care delivery models. Rehabilitation services, assistive devices, and materials need to be available in existing rehabilitation centres. A national priority list is recommended to improve the availability and coordination of rehabilitation services. Improved knowledge about disability and rehabilitation services in the wider community is needed. Addressing discriminatory health beliefs and the stigma affecting people with disabilities through community interventions and health promotion is recommended.
Background: Stroke in human immunodeficiency virus positive (HIV+) individuals is becoming an increasing concern. Being significantly younger than typical stroke patients, the impact of functional challenges on quality of life and burden on society becomes more eminent.
Objectives: This feasibility study aims to determine the requirements for a large descriptive cohort, to adequately describe the functional outcome of stroke patients with varying HIV status.
Method: All stroke patients meeting the inclusion criteria were recruited over a 6-month period at a South African inpatient rehabilitation centre. Data were collected on admission and discharge using outcome measures including the Barthel Index (BI), Berg Balance Scale (BBS) and the use of assistive devices used to describe independence with activities of daily living (ADL), mobility and safety post-stroke. Statistical analysis was performed using Stata version 14.2.
Results: The feasibility study identified appropriate procedures and barriers to a successful study in addition to describing preliminary data on participant demographics, relevant medical history and functional outcomes post-stroke. Limitations that affected feasibility included minimal recruitment sites, length of data collection period, timely communication of participant discharge plans and dates, and confirmation of participant HIV status. An appropriate comparison between sub-groups could not be made because of disproportionate group sizes, median age differences and no assessor blinding.
Conclusion: To increase generalisability and the understanding of the unique HIV+ stroke profile, multiple recruitment sites, longer data collection periods, assessor blinding and age-matched groups with HIV status confirmation are recommended.
African Journal of Disability, Vol 9, 2020
Compulsory distance education has always sought to be inclusive, providing educational opportunities for K-12 students unable to attend mainstream, face-to-face schools for medical, geographical, or personal reasons. However, how to effectively engage these diverse learners has remained a perpetual challenge, with a need for further investigation into the nature of student engagement with compulsory school distance contexts and how teachers can best support it. This qualitative study used focus groups (n=2 groups, n=16 participants) to examine teacher definitions and student engagement strategies within eKindy-12 distance education in Queensland, Australia. Categorical analysis was conducted using a priori codes for definitions, focusing on four previously established engagement types (i.e. behavioural, emotional, cognitive, and agentic engagement), and in vivo codes for strategies. Teacher definitions focused strongly on behavioural engagement, but most also contained elements of emotional and cognitive engagement; agentic engagement was only occasionally evidenced via practice descriptions. Teachers described engaging students by: building relationships, creating a safe classroom environment through differentiation, using inclusive technological tools to facilitate interaction and monitor progress, making learning fun and relevant, drawing on school-wide pedagogical frameworks and teaching strategies, and encourage self-regulation. Findings suggest distance education teachers face unique challenges around evidencing engagement and supporting student agency.
This article critically examines user-involvement in the service delivery process for assistive activity technology.
Data were collected in semi-structured interviews with 44 end users of assistive activity technology and in focus group interviews with 11 professionals at Norway’s Assistive Technology Centre. Data was analysed according to a stepwise deductive–inductive approach.
Flawed organisational principles like division of responsibility, unclear regulations, and a lack of competence with assistive activity technology among service professionals have hindered user involvement in the service delivery process.
A missing knowledge of assistive activity technology among professionals and the current organisation of services creates barriers for a positive collaboration with users in the service delivery process of assistive activity technology.
Purpose: Many children with autism spectrum disorder do not have symbolic play skills. The purpose of this study was to evaluate the effects of a training procedure on the acquisition, maintenance, and generalization of object-substitution symbolic play in children with autism spectrum disorder.
Methods: A single-case experimental design (multiple-probe across four behaviors) was used. One girl (5 years) and two boys (4–5 years) participated in this study. The training procedure involved withdrawing necessary items in play activities, supplying multiple substitutes, and providing hierarchical assistive prompts. Each child’s symbolic play responses across baseline, intervention, and follow-up conditions were recorded and graphed. Data analysis involved visual inspection of graphs.
Results: The results indicated that the procedure effectively increased and maintained object-substitution symbolic play. Generalization to untaught play activities occurred in all children, and symbolic play increased in the free play setting for one child.
Conclusions: Arranging play activities with missing items increased opportunities for children to engage in symbolic play. The training procedure can be used in clinical and educational settings as an initial step to establish and improve complex play behavior in children with autism spectrum disorder who lack such skills.
Purpose: The para-cycling classification system, consisting of five classes (C1–C5) for bicycling (C5 athletes having least impairments), is mostly based on expert-opinion rather than scientific evidence. The aim of this study was to determine the differences in race performance between para-cycling classes.
Methods: From official results of the men’s 1 km time trials for classes C1–C5 of seven Union Cycliste Internationale World Championships and Paralympics, median race speed of the five fastest athletes in each class was calculated (n = 175). Para-cycling results were expressed as a percentage of able-bodied performance using race results from the same years (n = 35). To assess differences between consecutive classes, Kruskal-Wallis tests with Mann-Whitney U post hoc tests were performed, correcting for multiple testing (p < 0.013).
Results: Para-cyclists in C1 reached 75% (median ± interquartile range = 44.8 ± 4.2 km/h) and in C5 90% (53.5 ± 2.9 km/h) of able-bodied race speed (59.4 ± 0.9 km/h). Median race speed between consecutive classes was significantly different (χ2 = 142.6, p < 0.01), except for C4 (52.1 ± 2.8 km/h) and C5 (U = 447.0, p = 0.05).
Conclusion: Current para-cycling classification does not clearly differentiate between classes with least impairments.