This article is based on studies carried out within the Young children’s learning research education programme. This undertaking involved five graduate students, all recruited from the Swedish preschool system. The licentiate thesis makes up the final product of their education programme, and the focus of each candidate’s licentiate thesis was preschool-level documentation. Using the results of all five theses, a re-analysis was conducted with the concept of normality as the common starting point. The purpose was to investigate whether documentation and assessment can change the view of normality in preschools, and furthermore, what consequences there may be for preschool activity. ‘The narrow preschool and the wide preschool’ is the model used to support the analysis, which is a model used in previous studies to review and discuss educational choices and conditions in the school system. Results of the present investigation show that the documents and assessments performed in preschool have a strong focus on the individual child and a traditional, school-oriented learning is highly valued. The documentation and assessment practices that take place now in our preschools, therefore, most likely influence the preschool view of normality and restrict the acceptance of differences.
Purpose: The aim of the present study was to investigate the experiences of people with Parkinson’s disease and their close communication partners regarding disease-related communicative changes and participation in everyday conversations.
Materials and methods: Semi-structured qualitative interviews were conducted with six dyads consisting of a person with Parkinson’s disease and a close communication partner. The interview material was analysed through thematic analysis.
Results: The main theme was the experiences of barriers and facilitators for participation in conversations. Subthemes were experiences related to changes in voice and articulation, language and cognition, body language and facial expressions, fatigue, self-image, communicative initiative, and familiarity with conversation partner. The results show individual variation. A change observed in almost all dyads was the person with Parkinson’s disease participating less in conversations.
Conclusions: Assessment and interventions should be based on a broad perspective on communication, and individuals’ priorities should be foregrounded in intervention planning. Both the person with Parkinson’s disease and communication partners need to make adjustments for communication to work. Therefore, close communication partners should be included in assessment and intervention of communication in Parkinson’s disease from an early stage.
Introduction: Spinal cord injury may seriously affect sexual health and sexuality, which can lead to lower self-esteem, social isolation, lower quality of life, and an increased risk of depression. Nurses play an extensive role in providing patient education. However, a gap between the patients’ need for information and the lack of information provided by nurses still exists. Therefore, knowledge about barriers and facilitators regarding discussing patient sexuality is necessary.
Methods: Semi-structured interviews were conducted with 25 nurses working in Spinal Cord Injury rehabilitation in one clinic in the Netherlands. The following themes were discussed during the interviews: (1) attitude, (2) social factors, (3) affect, (4) habits and (5) facilitating conditions.
Results: Addressing patient sexuality was difficult due to the nurses’ attitude and their environment. Sexuality was considered important but respondents were reserved to discuss the topic due to taboo, lack of knowledge, and common preconceptions. Participants expressed the need for education, a clear job description, time and privacy.
Conclusion: Nurses consider discussing patient sexuality as important but are hindered due to multiple factors. Organizational efforts targeted at knowledge expansion are needed to break the taboo and remove preconceptions. Nurses should provide opportunities to discuss the subject to intercept sexuality-related problems.
Purpose: To describe the extent of participation and engagement in family activities and explore variables potentially impacting on these factors in family activities among girls and young women with Rett syndrome (RTT) under the age of 21.
Materials and methods: The Child Participation in Family Activities (Child-PFA) questionnaire was sent to parents in the target group (n = 42). Additionally, age, number of siblings at home, ambulation level, clinical severity and level of hand function were recorded to explore possible impact. Data were analyzed using descriptive statistics, Fishers exact test and cross-tables.
Results: 23 families participated. Highest degrees of participation and engagement were seen in social and stationary family activities. Indoor activities were frequent and showed high levels of participation and engagement, Outdoor activities were infrequent and showed low levels of participation despite a high degree of engagement. Routine activities were frequent but showed moderate to low participation and engagement. A negative association was found between participation in watching a movie and number of siblings living at home, and positive associations between engagement and age in three family activities.
Conclusion: Therapists working with this target group may benefit from focusing on engagement in routine activities and modification of family activities.
Service-Learning stands out as a teaching approach that connects theory and practice by giving students the opportunity both to participate in a service that meets community needs and to reflect on the experience in class in order to gain a deeper understanding of the course content and an enhanced sense of civic engagement. The advantages of Service-Learning for inclusive education have recently been underpinned by studies, in which pre-service teachers are exposed to diverse population groups in schools or communities. Our study explores how Service-Learning is applied in teacher education in Austria. It is based on a series of semi-structured interviews with 13 teacher educators who apply this form of teaching in cooperative projects with schools. Our findings suggest that teacher educators distinguish between five orientations in Service-Learning (connecting theory and practice, engagement, community needs, job-related skills, learning outside the classroom), take on distinct expert and support roles, and see multiple benefits in Service-Learning. Our study underlines the importance of Service-Learning for inclusive education and the value of preparing pre-service teachers for dealing with diverse groups of pupils by allowing them to experience the real-world problems that confront schools.
Resilience is the capacity to cope successfully with various threats. This paper aims to adapt the Resilience-Scale of Schumacher et al. (2004. Die Resilienzskala – ein Fragebogen zur Erfassung der psychischen Widerstandsfähigkeit als Personmerkmal. [The Resilience Scale – A Questionnaire to Measure Mental Resilience as a Personal Characteristic]. Zentrum für Klinische Psychologie, Psychiatrie und Psychotherapie) to measure the tendency of being resilient even before a threat occurs. Since primary school students are exposed to various threats at school, 535 4th grade students of Austrian primary schools were surveyed for the study. The reliability of the short-scale was found to be acceptable (Cronbach’s α = .66), and the tendency towards resilience can be explained by the students’ perception of their social inclusion in class (F (1,252) = 15.11, p<.05) and the relationship with their mothers (F (2, 251) = 10, 02, p<.05). The stability of the students’ tendency of being resilient was only moderate. A similar correlation between resilience and school-wellbeing for victims and non-victims of bullying can be reported. Future studies should focus more on primary school students’ resilience and related protective factors.
The paper presents possibilities of comprehensive use of support tools for pupils at risk of school failure in the Czech primary schools practice in order to support the implementation of inclusive education. The research data obtained during the project implemented in the Pilsen region in period of 2016–2019 brought the results of assessment of new support tools that are not yet systemically introduced in the Czech educational system and commonly available for all schools, although these instruments seem to be very effective or even necessary for quality inclusive education. The most important new tools include the position of inclusion coordinator in schools, strengthening the counselling services available directly in schools, as well as new strategies for promotion of cooperation between the schools, families, and social services – including some specific techniques, such as parenting workshops on child support in education, case conferences with child’s participation or seminars for parents and teachers on collaboration with social services. However, the exploitation of the results of this research and assessment will depend largely on political decisions at both local and governmental levels.
Previous research has repeatedly confirmed that students with special educational needs (SEN) are generally less accepted by their peers. Although inclusive teaching strategies and classroom characteristics are frequently hypothesised to improve students’ social participation, empirical evidence is scarce. Therefore, the purpose of this paper is to investigate classroom characteristics and teaching practices that can help foster social participation, in general, and reduce the effect of lower social participation among students with SEN, in particular. The sample includes 518 students in 31 Grade 4 and 7 classes from Austria, of whom 99 are students with SEN. The results show that students with SEN receive fewer peer nominations and perceive their social participation to be lower compared to their peers without SEN. However, the association between SEN and self-perceived social participation is moderated by the social classroom climate, i.e. the difference becomes smaller when the social classroom climate is more positive. Furthermore, the higher the personalised instruction was rated by a student, the higher was his or her social status. The results suggest that interventions should focus not only on the improvement of individual students (with SEN) but also on changing the whole classroom environment.
Representation of disability in school textbooks may influence pupils’ knowledge and perceptions of people with disabilities. The aim of this study was to investigate representation of people with disabilities in school textbooks. The study employed a mixed-methods approach. Quantitative frequency analysis was used to investigate the extent of representation of disabilities in texts and pictures in 78 Norwegian textbooks for Grades 5–10. Regarding texts, the results showed that people with disabilities were represented in less than half of these textbooks (49%). Concerning pictures, people with disabilities were even less represented, appearing in only 29% of the textbooks. These quantitative findings were supplemented by a qualitative survey of textbook authors, who were asked to explain the marked absence of disability references in their own books and in school textbooks in general. The two most frequent explanations were that textbook authors had either overlooked people with disabilities, or that the Norwegian National Curriculum (Kunnskapsdepartementet 2006. Lærerplanverket for Kunnskapsløftet (LK06) [The Norwegian National Curriculum]. https://www.udir.no/lk20/overordnet-del/) did not explicitly mention this minority. We discuss these explanations as expressions of conscious considerations rather than unconscious omissions.
Objective: To investigate and summarize the literature on the validation of International classification of functioning, disability and health (ICF) core sets from 2001 to 2019 and explore what research methods have been used when validating ICF core sets.
Methods: The current study is a scoping review using a structured literature search.
Results: In total, 66 scientific articles were included, of which 23 ICF core sets were validated. Most validation studies were conducted in Europe using a quantitative methodology and were validated from the perspective of patients. Analysis methods differed considerably between the studies, and most ICF core sets were validated only once for a single target population or from a single perspective. The comprehensive core sets were validated more often than the brief core sets, and core sets for stroke and low back pain were validated most often.
Conclusion: The results of the current study show that only 66% of the existing ICF core sets are validated. Many of the validation studies are conducted in a European context and from a single perspective. More validation studies of ICF core sets from the perspective of both patients and professionals are needed.
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.
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.
Assistive technology is the products and services used by individuals with functional limitations to enable participation in society and realisation of rights afforded by the United Nations Convention on the Rights of Persons with Disabilities. The Assistive Product List is a comprehensive list of products identified as essential for access through universal health coverage. Key stakeholders, including organisations of persons with disabilities, civil service organisations, academic organisations and government ministries are collaborating to integrate assistive technology into policy and develop a priority assistive products list for Malawi.
To understand the organisational characteristics of, and assistive products provided by, key stakeholders working in AT in Malawi.
Online survey of representatives from key stakeholder organisations.
We surveyed representatives of key stakeholder organisations to gather information regarding assistive technology product and service provision in Malawi. Responses were analysed using counts for closed-ended questions, and conventional content analysis for open-ended questions.
A total of 36 of the 50 APL products were provided by eight organisations. Related services were provided for 36 of the 50 APL products by twelve organisations. Five organisations reported providing both products and services. Products and services are largely funded by donation and provided free to those who require them.
A range of organisations in Malawi play a role in assistive product delivery and related services. Coordinated AP delivery and service provision is required at a national level which is sustainable and inclusive, and is based on identified needs of the Malawian population.
Coronavirus 2019 (COVID-19) was first identified in December 2019 with millions of cases reported globally in the succeeding months. Initial hospitalisation strives to minimise multisystem organ failure and of those that survive, individuals can present with profound rehabilitation needs. The purpose of this case series is to describe occupational therapy (OT) and special technology considerations for three male Veteran patients hospitalised with suspected or confirmed COVID-19.
This is a descriptive case series using a retrospective electronic health record review at a Veterans Administration hospital. The case series includes three male Veterans with confirmed or suspected COVID-19 (ages 69–78) who were referred to OT. The cases were selected to demonstrate the novel use of technology and strategies to reduce the risk of transmission. In two of three of our cases, we describe acute rehabilitation with a focus on activity tolerance, participation in occupations, and discharge planning. In all cases, we measured vital signs and activity tolerance as primary outcomes.
Results and conclusions:
The findings suggest that outcome measures focussing on activity tolerance to maintain stable vital signs during the recovery phase is central to the progression of activities. We observed in our cases that the Person-Environment-Occupation-Performance (PEOP) model can guide practice and complement the medical model in management of these patients. We utilised technology to engage family members in the rehabilitation care and minimise exposure risks.
Purpose: To identify facilitators of and barriers to the coordination of return-to-work between the primary care services, the employee, and the employers from the perspective of coordinators and employees on sick leave due to common mental disorders (CMDs).Material and methods:
Descriptive qualitative study. Semi-structured interviews were conducted with eighteen coordinators and nine employees on sick leave due to CMDs. The Consolidated Framework for implementation Research (CFIR) was used as a starting point for the interview guides and in the thematic analysis of data.
Results: The results show facilitators and barriers related to the CFIR domains“intervention characteristics,” outer setting,” inner setting,” and“characteristics of individuals.”Positive attitudes, an open dialogue in a three-party meeting, and a common ground for the sick leave process at the primary care centre facilitated coordination, while an unclear packaging, conflicts at the employee’s workplace, and a lack of team-based work were examples of barriers.
Conclusion: The results indicate a need for the detailed packaging of coordination; formalization of coordinators’ qualifications and levels of training; and acknowledgment of the role of organizational factors in the implementation of coordination. This is important to further develop and evaluate the efficacy of coordination.
People with Albinism tend to face multiple adverse physical, psychological and social consequences. Very little is known about experiences of women with Albinism and their deliberations whilst making reproductive decisions. This study aimed to explore lived experiences of women with Albinism and to understand their perspectives on reproductive decision making. Qualitative in-depth semi-structured interviews were conducted with ten women with Albinism in Taiwan. Five key themes emerged from the accounts which were centred around the sense of discrimination that they felt whilst growing up, their strive for normality, making difficult choices in their reproductive decisions, desire to protect children from harm and reflections of parenting struggles from own experiences and the experiences of their parents. We call for global and national policy makers and practitioners to introduce explicit measures to challenge the myths, stereotypes and prejudices associated with Albinism including specific interventions towards supporting women in pregnancy decision making.
The Philosophy, Disability and Social Change online conference comprises presentations by disabled philosophers whose cutting-edge research challenges members of the philosophical community to:
- think more critically about the metaphysical and epistemological status of disability;
- closely examine how philosophy of disability is related to the tradition and discipline of philosophy;
- acknowledge the continuing exclusion of disabled philosophers from the profession of philosophy;
- seriously consider how philosophy and philosophers contribute to the pervasive inequality and subordination that disabled people confront throughout society;
- develop mechanisms designed to transform the current professional and institutional position of disabled philosophers in particular and the economic, political and social position of disabled people more generally.
The presentations will highlight the diversity and range of approaches to critical philosophical work on disability and showcase the heterogeneity with respect to race, gender, nationality, sexuality, gender identity, culture, age and class of the community of disabled philosophers.
This conference is organised as part of the Alfred Landecker Programme at the Blavatnik School of Government.
- Unmaking disability: Philosophy and social change
- African communitarian philosophy and disability in African contexts
- Dis/ableist inheritance
- Ageism, ableism and the power of the double bind
- Philosophy, the apparatus of disability, and the nursing-home industrial complex
- Neurodiversity and the pathology paradigm
- A neurodiversity paradigm for moral responsibility
- Cheap talk: Stuttering, trolls and talking heads
- Vulnerability to COVID-19 and the moral perniciousness of congregate care
- Captivity, carceral logics, and disposability
- Chronic fatigue as adversity under capitalism
- Phenomenologies of debilitation and questions of volition
- 'He's not worth it': The deleterious character of the disabled Black male
- COVID-19 as crisis
- Risking ourselves: The politics and persons of risk
Source e-bulletin on Disability and Inclusion