Exclusive Papers Collection of Editorial Board Members of Disabilities

Diagnoses of ADHD in adults continue to increase, and the number of college students with ADHD has risen in particular. Qualitative research on this population has been common, but it is not clear what conclusions can be drawn from this research base. We conducted a review of the qualitative research on college students with ADHD over a 20-year period (2002–2021). A systematic search yielded 41 papers that were reviewed in detail. Studies were grouped into four topic areas, with the most researched area being the college experience for these students. Most sample sizes were small, with a median of 10 participants, and most studies used students’ self-reports of having ADHD as the sole method of diagnosis identification/verification. Very few studies (7.3%) included a comparison group of students without disabilities. These results suggest that the qualitative research base on college students with ADHD has significant limitations, including difficulties with generalization, uncertainty regarding diagnostic accuracy, and an inability to make comparative statements about students with vs. without ADHD. Full article

Introduction: Despite legislation mandating accommodation policies in higher education, support for learners with disabilities is often not implemented within health and human services (HHS) education programs, particularly in fieldwork settings. This paper will describe the protocol of a study aimed to (a) explore challenges and opportunities of current practices for supporting learners living with disabilities in a fieldwork context, across 10 HHS programs; and (b) develop, pilot and evaluate innovative accessibility practices to decrease existing barriers faced by educators and learners. Method: Using a critical disability studies framework, we designed a national, multi-profession, mixed methods design. Data are collected through interviews (qualitative) and an online survey (quantitative) that participants complete prior to the interview. Additionally, an online mapping diary is used to facilitate the understanding of accessibility in fieldwork education from the perspective of the learners. Participants include learners living with disabilities, academic fieldwork coordinators, fieldwork educators, accessibility advisors and professional organizations representatives. Implications: Learners living with disabilities navigate systemic barriers: (a) the additional “work of being a disabled learner”, during a rigorous academic program, and (b) absent or inadequate fieldwork accommodations. Exploring those systemic barriers as faced by all partners offers the potential to develop strategies and tools to foster inclusive and accessible HHS education. Full article

Active living lifestyles for wheelchair users (ALLWheel) was developed to improve leisure time physical activity (LTPA). The purpose of this study was to assess the feasibility of the ALLWheel program. In a pilot pre-post design, 12 manual wheelchair users in three Canadian cities completed the ALLWheel program (containing 14 sessions over 10 weeks delivered by a peer using a smartphone). Feasibility indicators were collected for process, resources, management, and intervention—before, during, and after ALLWheel. Exploratory outcomes were collected for LTPA (primary outcome), motivation, self-efficacy, and satisfaction with autonomy support and goal attainment—at baseline, immediately following ALLWheel, and three months later. Feasibility was evaluated using a priori criteria for success (yes/no), and within-subjects comparisons were made to explore the change in exploratory outcomes. The participants were 48.9 ± 15.1 years of age and women (66.7%), and had spinal cord injury (41.7%) or multiple sclerosis (16.7%). Feasibility was achieved in 11 of 14 indicators, with suggestions to consider subjective reports of LTPA as the primary outcome in a future randomized controlled trial to overcome limitations with device-based measures and to use strategies to enhance recruitment. Mild-intensity LTPA and satisfaction with goal attainment improved after the completion of ALLWheel. With minor modifications, it is feasible that ALLWheel can be administered to wheelchair users by a peer using a smartphone. Full article

The impact of disability on people’s lives is often underestimated because the extra costs of living with a disability are not accounted for. This paper analyzes several different methodologies for estimating those costs and explores their usefulness in designing inclusive social policies. For example, one approach is to measure what is currently being spent, while another is to estimate what would need to be spent for equal participation. These can be measured using statistical techniques or through a more qualitative methodology. Each of these methods has its advantages and disadvantages. The paper concludes with recommendations for which methodology fits which purpose, and how they can be used together to obtain a full accounting of the extra costs incurred by people with disabilities. Full article

Universal education is an elusive goal in many countries, especially for disabled children. Nonetheless, determined efforts around the globe have shown that it can become a reality once existing systems were re-imagined by practitioners who arguably have been to the fore more so than academic researchers. Their efforts have identified new ways of thinking about children’s disabilities, the introduction of new practices in schools, forging partnerships between teachers and parents and mobilising community resources. Societal change is both a consequence of and a support to these local systems. The complexity of creating education for all may be daunting, but it is achievable when driven by committed, creative and inspirational leadership from practitioners, as is evident from the examples provided in this paper, which were further validated by research and evaluation into their efforts. 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

Background: People with an intellectual and/or developmental disability are at increased risk of adverse oral health outcomes and often require support from caregivers to assist in maintaining or seeking treatment for their oral health needs. However, caregivers and support workers are often family members with limited formal oral health training. Hence, the aim of this pilot study was to review the outcomes of the ‘Smiles for Life’ oral health education workshop with reference to their knowledge, attitudes, and practices of caregivers of people with an intellectual or developmental disability. Methods: A single group pre-test post-test intervention design was used to explore the preliminary effectiveness and appropriateness of the Smiles for Life oral health education workshop. Results: A total of 244 participants completed both the pre and post knowledge test. Oral health literacy scores decreased following the post test. Those with higher levels of education achieved higher post-training knowledge scores. Overall, caregivers reported satisfaction on the material presented however, it could be improved with more practical demonstrations. Conclusion: Providing an oral health education tool that caters to the diverse caregiver audience presents a unique set of challenges, despite oral health education in this professional group being vital. Future studies may benefit from reviewing the efficacy of a more tailored educational intervention. Full article

Persons with disabilities still experience challenges in obtaining employment even though obligations associated with their employment are in place in legislative frameworks that strive to support transformation within the labour market. This paper explores employers’ perspectives on the employment of persons with disabilities in South Africa identified in a case study. The influence of social capital on disability inclusive employment was explored from the perspective of two employers who employed trainees who completed an auxiliary training programme for persons with disabilities, which provides opportunities to facilitate pathways to economic inclusion and/or employment. Findings reveal that despite the call for increased labour inclusivity, the development of social capital is not clearly apparent when persons with disabilities are considered for employment. Organisational attitudes and beliefs seem to stem from the obligatory standpoint of the organisations. The paper highlights the need for employers to look beyond impairments so that employment goals are shared and re-enforced by understanding and possibly re-evaluating their views on their organisation’s obligations, norms, values and mission, and goals. Insights can guide employers to think more holistically about ways to facilitate the economic inclusion of persons with disabilities. Full article

Individuals with spinal cord injury (SCI), with high healthcare utilization rates and costs, require special attention and tailored care protocols to meet their healthcare needs. This qualitative study collected narrative information from adults with SCI and their family members and/or caregivers to examine the perceived role of healthcare providers and systems in the development and treatment of secondary health conditions (SHCs). After personal information was collected, individuals participated in focus groups which were recorded and transcribed; transcripts were then reviewed, cleaned, and uploaded to NVivo10 software to facilitate the analysis. An initial stage of coding was conducted which identified potential categories and themes; afterwards, the perceived role of healthcare providers in the development and management of secondary health conditions (SHC) was prioritized and transcripts were re-coded. Two overlapping themes emerged: (1) Iatrogenic and nosocomial factors; and (2) Relationships with healthcare providers. Iatrogenic and nosocomial factors had three subthemes: (1) Misdiagnosis; (2) Perceived mistreatment or mistakes made during treatment; and (3) Unintended consequences of medical treatment; while three subthemes were identified for Relationships with healthcare providers: (1) Respect; (2) Knowledge and experience; and (3) Patient Expertise. To improve safety, reduce healthcare costs, and facilitate more favorable perceived outcomes for individuals with SCI, healthcare providers, organizations and systems need to implement principles of high reliability organizations to improve outcomes through the treatment and prevention of SHC. Full article

Background: One in four New Zealanders identify as disabled. Disabled people, including Māori (the indigenous people of New Zealand (NZ)), experience health disparities. Systemic and individual health professional (HP) biases are factors that may affect health outcomes. Disability education is a means for improving attitudes and behaviors towards disabled people. The objective of this study was to explore NZ HP students’ understanding of disability and health-related concepts. Methods: HP students from one tertiary institution in NZ were interviewed through Zoom video call about their understanding of disability and health. A relativism paradigm and contextualism epistemology (underpinned by the socio-ecological model) shaped the reflexive thematic analysis. Transcripts were analyzed at a deductive and latent level. Results: Nine HP participants, from different professional courses and cultural backgrounds, were interviewed. Three main themes influenced participants’ understanding of disability: life experiences, professional education, and societal exposure. Participants who had more experience with disabled people had a deeper and more nuanced appreciation of the challenges disabled people face in accessing health services and obtaining equitable health outcomes. Cultural background also influenced the participants’ understanding of disability. Participants preferred more experiential learning methods to improve their knowledge of disability concepts. Lastly, expectations of inclusion are determined by observing social norms. Conclusion: Participants reported learning just a few models of disability. The HP students predominantly came from a perspective of ensuring equality rather than equity. There was limited recognition of the systemic biases that exist within multiple social determinants and how these perpetuate health inequities for disabled people. A socio-ecological consideration of disability throughout the curricula, self-reflection, acknowledging systemic bias, and proactively including disabled people as HP students and teachers are potential means for addressing health inequities. Full article

Children with disabilities are at greater risk of social exclusion. In part, this results from the negative perceptions of disability held by their peers. An innovative, school-based project used creative music-making sessions facilitated by young disabled musicians to nurture more positive attitudes among children aged 9 years in four schools, with two classes from each. In all, around 200 pupils were involved in weekly sessions totalling 16 h. Their attitudes to disability were assessed before and after participating in the project, along with the reactions of parents and teachers. Pupils were significantly more disposed to interacting with children with disabilities and to persons with disabilities more generally as well as to having a teacher with a disability. Parents and teachers confirmed the pupils’ enthusiasm for the project and the impact it had on them. A core driver for change appeared to be sharing enjoyable musical activities with competent musicians who had disabilities. Further research should explore the potential of mentoring by disabled persons in other arts activities and sports to provide further validation of this approach. Full article