Disabilities, Volume 3, Issue 1 (March 2023) – 10 articles

The United Nations Convention on the Rights of Persons with Disabilities (CRPD) establishes that people with disabilities shall enjoy their human rights on an equal basis with others. Those rights include the right to legal capacity and to protection against discrimination, including intersectional and multiple forms of discrimination on the basis of disability and gender. In an effort to support the realisation of the CRPD, the United Nations team in Serbia undertook a project to address the implementation of these rights under the UN Partnership on the Rights of Persons with Disabilities (UNPRPD) programme. Namely, by bringing together stakeholders from the UN, government and civil society, the UNPRPD project in Serbia sought to create structural changes to uphold the rights of people with disabilities. With a view of understanding the process of change within, rather than the outcomes of, this UPRPD project, twenty-eight semi-structured interviews were conducted using the Most Significant Change Technique (MSCT) with key stakeholders involved in such a project. The interviews were analysed using Interpretive Phenomenological Analysis (IPA) to preserve the unique and diverse perspectives of participants who had differing roles across the project. The analysis allowed us to identify a number of facets of the process that facilitate structural change: coalition-building events; strengthening stakeholder capacity and relationships; the participation of persons with disabilities; and innovation in terms of what made the project significant, novel and in itself a change. All these facets are discussed in this article, with the purpose of supporting global efforts in alignment with the CRPD. On the whole, this article aims to support a better understanding of disability-inclusive development projects in line with the CRPD and to give evidence on how countries may begin to tackle the structural exclusion of persons with disabilities in society. Full article

It is often challenging for youth with disabilities to access university education in Africa, and for those who manage to make it to university, while there, their experiences are still not barrier-free. The purpose of this study was to uncover the experiences of the barriers and facilitators to inclusion for youth with disabilities in universities in South Africa, Ghana and Ethiopia. This qualitative project applied a critical, participatory research approach to exploring youth experiences. Youth with disabilities and their colleagues conducted seven focus group discussions, with an average of five students in each focus group, and we used a qualitative descriptive method to analyze data. The findings uncovered similarities and differences in the barriers and facilitators to inclusive education among students with disabilities across all sites. Participants noted limited financial support and university services, and how inaccessible spaces and harmful attitudes are all barriers that hinder their access to education and inclusion. The identified facilitators include support systems and self-directed facilitation. Although the students self-advocated and reported some support to assist in their inclusion in university, it was still insufficient. Notably, some universities are making a concerted effort toward inclusion and accessibility, but more work needs to be done. Full article

The aim of our study was to characterize the face recognition skills, theory of mind skills, and language skills of a single group of French participants with Williams syndrome (WS) compared to a group of participants with Down syndrome (DS). Twelve French-speaking participants with WS and 12 French-speaking participants with DS took part in this study. The two groups were matched for nonverbal and verbal levels. We used the Benton Facial Recognition test to study the groups’ ability to recognize faces, the Theory of Mind Test Revised, and the morphosyntactic production and morphosyntactic comprehension subtests from the French test battery “Instruments pour le Screening et l’Approfondissement de l’examen des DYsfonctionnements du Langage chez l’Enfant (ISADYLE)”. The results of the participants with WS were systematically better than those of the participants with DS. Nevertheless, although they outperformed the participants with DS, the participants with WS were far from performing at ceiling level. Most importantly, we found no significant correlations between performances on the various standardized tests for either group of participants. The evaluation of cognitive skills in a single group of French participants with WS confirmed that they present a complex profile. Because these competences are strongly influenced by social and cultural aspects, it is therefore essential to develop studies for specific languages, including when one is examining a rare developmental disability. Full article

Objective: To identify the factors influencing the implementation of telerehabilitation (TR) in a post-stroke early supported discharge (ESD) rehabilitation program as perceived by clinicians and managers. Methods: A descriptive qualitative design was used in collaboration with a Canadian ESD stroke rehabilitation program. After 15 months of pre-COVID-19 implementation and 4 months of COVID-19 implementation, 9 stakeholders (7 clinicians, 1 coordinator and 1 manager) from an ESD program participated in 2 focus groups online or an individual interview. Qualitative data were coded and analyzed semi-deductively for the pre-COVID-19 and COVID-19 phases using the Consolidated Framework for Implementation Research (CFIR). Results: Four categories emerged related to the CFIR, each with themes: (1) Telerehabilitation, which included “Technology” and “Clinical activities”; (2) Telerehabilitation users, which included: “Clients’ characteristics” and “Clinicians’ characteristics”; (3) Society and healthcare system, which included “Changes related to COVID-19” and “ESD program”; and (4) TR implementation process, which included “Planning” and “Factors that influenced practice change”. Conclusions: Factors impacting TR implementation in the ESD program were found to be numerous and varied according to the pre-COVID-19 or COVID-19 phases. Clinicians’ motivation regarding potential gains for them in using TR was key in its implementation during the COVID-19 period. Full article

The COVID-19 pandemic continues to have a global and multifaceted impact on public health. Marginalized and vulnerable populations, such as college students and postdoctoral fellows with disabilities or pre-existing conditions, are being disproportionately affected by the COVID-19 pandemic. Various barriers contribute to an individual’s intentions to seek mental health help, but with COVID-19’s unprecedented permeability, more research is needed to support this student population. This phenomenological study explored the coping strategies and help-seeking behaviors of college students and postdoctoral fellows with disabilities during the COVID-19 pandemic. Using semi-structured, in-depth interviews from fall 2020 (n = 36) and spring 2021 (n = 28), a thematic analysis was conducted. The Transactional Model of Stress and Coping was used to triangulate findings, to better understand the relationship between perceived stressors, coping mechanisms, and psychological outcomes. The findings show that (1) college students with disabilities coped in multiple ways (i.e., behavioral, relational, and mental), with some noting improvements in their coping abilities by spring, and (2) stigma prevented college students with disabilities from seeking help when needed. These findings emphasize the need for higher education to address ableism and use factors beneficial to fostering resiliency (i.e., social support, optimism, and self-advocacy) among college students with disabilities. Full article

People with intellectual disability lack opportunities to engage in sports, although the benefits of doing so may be even greater for them. One option is to encourage their inclusion in mainstream sports clubs that exist in nearly all European communities. Although there is a growing knowledge base within organisations such as Special Olympics in adjusting sports to meet the needs of people with intellectual disability, inclusion in community clubs raises additional challenges. This exploratory study aimed to garner the experiences of coaches alongside those of clubs members—with and without disabilities—in 12 community sports clubs in three European countries. In all 20 coaches and 51 members took part in semi-structured interviews. A thematic content analysis was used to devise a conceptual model describing an inclusive sports club. The overarching theme was that inclusive clubs require an ongoing balancing between a focus on sporting skills and performance, with managing the needs and characteristics of the players and the inter-relationships among them. Six subthemes were identified that described the core strategies to the effective functioning of the clubs. However, the vision and commitment of coaches was crucial and their recruitment was the main challenge the clubs faced. In addition, new opportunities for training coaches are needed to support the extension of inclusive clubs across a range of sports and locations. Continuing research could usefully identify the benefits to club members and identify sport-specific adaptations required to make clubs more fully inclusive. Full article

Understanding the complexity of informed consent processes is critically important to the success of research that requires participants to test, develop, or inform research data and results. This is particularly evident in research involving persons experiencing neurodegenerative diseases (e.g., Alzheimer’s disease, dementia) that impair cognitive functioning, who according to national law are considered to have a diminished capacity, or to lack the capacity, to consent to research participation. Those who would potentially benefit most from applied research participation may be excluded from participating and shaping data and outcomes. This article offers insights into challenges faced by the Smart and Healthy Ageing through People Engaging in Supportive Systems (SHAPES) Project in obtaining the consent of older persons, including older persons with disabilities. The promotion of continuing health, active ageing, and independent living is central to SHAPES, requiring project partners to reflect on traditional informed consent approaches to encourage the full, cognisant participation of older persons with disabilities. We examine how this issue may be addressed, with reference to the inclusive approach of SHAPES. In respecting the inalienable legal capacity of all legal persons, SHAPES uses the UN Convention on the Rights of Persons with Disabilities (CRPD) and the human rights model of disability as part of the theoretical framework. A novel, inclusive, representative informed consent framework was designed and is detailed herein. This framework provides significant opportunity to advance the inclusion of persons with disabilities or those experiencing neurodegenerative diseases in innovative research and is readily transferable to other research studies. The SHAPES approach is a substantial contribution to research on informed consent, demonstrating the utility of the human rights model of disability in facilitating the full research participation of target populations. Full article

During the COVID-19 pandemic, the province of Quebec, Canada implemented stringent measures to mitigate virus transmission, which considerably affected the life of people with disabilities (PWD). The objective of this study was to explore the experiences of PWD during the first year of COVID-19 restrictions across the province. Participants who self-identified as having a disability in the Ma Vie et la pandémie study (MAVIPAN) were invited to participate in a semi-structured interview between December 2020 and May 2021. A mixed inductive and deductive approach was used to conduct a thematic analysis using NVivo 12. Forty PWD from Quebec, Canada participated in the interviews (mean [SD] age, 55.4 [15.5] years, 50% women). A deterioration in mental health and a reduction in social contact with loved ones were reported. PWD experienced delays and cessation of health services and reported feeling at risk of contracting severe strains of COVID-19 because of their health condition. Enhanced difficulties experienced by PWD and the lack of consideration specific to PWD by public authorities during COVID-19 was particularly concerning for participants in this study. Future studies should explore the value of implementing social programs specifically targeting PWD to enhance support as the pandemic continues. Full article

With increased physical restrictions during the coronavirus disease 2019 (COVID-19) pandemic, many individuals, especially older adults and individuals with disabilities, experienced increased feelings of loneliness. This study aimed to identify factors associated with loneliness among older adults and people with disabilities residing in British Columbia (BC), Canada 10 months following COVID-19 physical restrictions. Participants included a total of 70 adults consisting of older adults (>65 years of age) without any self-reported disabilities and adults (aged 19 or above) with disabilities (e.g., stroke, spinal cord injury, etc.). Participants completed standardized self-report measures of their levels of anxiety, depression, social support, mobility, and loneliness. We used hierarchical linear regression to determine the association of age, sex, disability status, anxiety, depression, social support, and mobility with loneliness. Participants reported general low levels of loneliness, anxiety, and depression and an overall high level of perceived social support. Most participants reported living with others. Our analysis showed a positive association between anxiety and loneliness (β = 0.340, p = 0.011) and a negative association between social support and loneliness (β = −0.315, p = 0.006). There was no association between depression and loneliness (β = 0.210, p = 0.116) as well as between mobility and loneliness (β = −0.005, p = 0.968). These findings suggest that anxiety and social support have been significantly associated with loneliness in older adults and people with disabilities during the COVID-19 pandemic. Increased efforts to reduce anxiety and improve social support in clinical and community settings may be helpful in reducing loneliness in older adults and people with disabilities during the COVID-19 pandemic. Full article