Disabilities, Volume 2, Issue 2 (June 2022) – 14 articles

The study’s aim is to analyze the improved hand function and bimanual performance with unilateral cerebral palsy (CP) from repeat doses of an augmented, group-based pediatric constraint-induced movement therapy (pCIMT) camp. Fifteen children with unilateral CP (ages 5–15 years, 9 male, 6 female, Manual Abilities Classification System (MACS) I = 3, MACS II = 11, and MACS III = 1) participated in two sessions of an annual pCIMT camp. Participants attended 10 days of camp where they received group-based training wearing a constraint for a total of 50 h, received bilateral, occupation-based activities for 10 h (60 h total) including 30 min each day on the Hocoma Armeo^®Spring. The Assisting Hand Assessment (AHA) was administered pre-intervention and post-intervention. Our results discovered a mean interval dose 1 and 2 was 511 days. Dose 1 mean AHA score at baseline was 55.93 ± 12.78 and 63.07 ± 12.85 at post. Dose 2 mean AHA score as 58.13 ± 14.83 and post 66.53 ± 12.82. In conclusion, there was an overall significant bimanual functional improvement based on AHA scores that indicate, regardless of which camp session, scores improved from pre-intervention to post-intervention. There was a generalized upward trend in improved hand function of a group-based pCIMT, and diminished effects between doses were reversed with repeat doses. Full article

Research into family quality of life (FQoL) is becoming increasingly popular. However, studies into the interrelations between family and individual quality of life (QoL) are still scarce. The aim of this article is to illustrate how having a child with a (rare) chronical illness/disability (specifically, Neurofibromatosis Type 1) affects both the family as a whole and its members individually. The lived experiences are recounted by the Mother (first author) and have been further explored through the method of co-constructed autoethnography. Metaphors have been used to help understand the findings. Our findings show that each individual QoL not only influences the FQoL but has a domino effect on each other. Individual lives are intertwined, and accordingly their well-being cannot be seen as being distinct from these interrelationships. (F)QoL should be viewed as a ‘praxis of care’, where caregiving occurs to and by each member, and continuously changes over time. Full article

Background: The fulfilment of basic psychological needs (BPNs) is seen as an integral part of human self-determination, subjective wellbeing, and overall quality of life. However, the meaning of these psychological constructs for individuals with the most extensive support needs remains elusive. Methods: Primary relatives of nine people diagnosed with severe or profound intellectual and multiple disabilities were interviewed about their perceptions of autonomy, competence, and relatedness regarding their family member with complex care needs, and about the ways in which they tried to support their family member in fulfilling specific BPNs. The interview analysis followed a grounded theory with the sensitizing concepts approach. Results: The relatives assigned important meaning to the BPNs, providing insights into their subtle nature, their implicit drivers, and how they were experienced. The relatives also identified serious challenges in detecting, clarifying, and creating opportunities for BPNs. Conclusions: The themes in the relatives’ perspectives can be summarized into a conceptual framework that may contribute to better mutual understanding between people with complex care needs, their relatives, and healthcare providers. 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

Young infants, children, and persons of any age who have cognitive limitations can be thought of as tyro learners, who are beginners in learning. For tyro learners, the self-produced mobility afforded by a powered mobility device offers opportunities, to explore tool-use learning and interact with the surrounding environment, thereby potentially enhancing development and learning, providing a foundation for future goal-directed, tool-use activities. The Assessment of Learning Powered mobility use tool, version 2.0 (ALP), developed with tyro learners, is a process-based implementation package, focused on assessing and progressing an individual’s understanding of how to use a powered mobility device. Although the ALP tool can be used with any powered mobility learner, research suggests that this process-based approach may be, especially, beneficial for tyro learners, who are in the early phases of learning how to operate a powered mobility device. This article aims to (1) explain tool-use learning in powered mobility intervention; (2) distinguish between the characteristics of process-based and task-based implementation packages; (3) provide an in-depth description of using the ALP tool in providing powered mobility intervention; and (4) highlight the benefits of using the ALP tool, with a focus on tyro learners. Full article

About 70% of children and adolescents with cerebral palsy experience gait impairments which affect their autonomy and well-being. Robotic-assisted gait training using the Lokomat is particularly promising for rehabilitation as it provides a standardized environment favoring the massive repetition of the movement, in which physical demands are low on the therapist and high training loads can be achieved. As no guidelines exist regarding training protocols and Lokomat settings, the goal of this narrative review was to summarize previously published information on the use of RAGT in children and adolescents with cerebral palsy and to provide an opinion on possibilities for improving future research. The thirteen studies reviewed reported both positive and null effects of Lokomat training on gait. Half of the studies combined the Lokomat with other types of training, and only five used a control intervention to assess its benefit. Overall, training was administered 1–5 times per week for 20–60 min, over 1–12 weeks. Although Lokomat settings were not always described, progressively decreasing body weight support and guidance while increasing the treadmill speed appeared to be prioritized. The variety of training protocols and settings used did not allow pooling of the studies to assess the effects of interventions on gait parameters in children and adolescents with cerebral palsy. This narrative review highlights the need for homogenization of interventions so that clear guidelines can emerge and be applied in rehabilitation centers. 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

Down syndrome (DS) is the most identified genetic form of disability. Individuals with DS have cognitive and linguistic impairments that vary from severe to mild, although they may show strengths in imitation, social learning, and the use of body language. Many studies have shown that early interventions for sustaining the development of children with DS (physically, linguistically, and cognitively) provide important results, enhance their abilities, and improve their life. Children with DS benefit when supported in their linguistic and cognitive development in the family context, for example, through the ability to compare and relate objects or situations (i.e., transfer competence). Although many studies have shown mediated learning strategies applied in a home environment to enhance children’s analogical, analytical, or inferential thinking, including for people with disabilities, there remains a lack of studies of these strategies for children younger than three years of age. This is in contrast with studies that present analogical thinking (i.e., transfer ability) as one of the fundamental approaches developed before the age of three. The present study aims to highlight mothers’ perceptions about mediated learning strategies used in the home environment to support the transfer ability in children with DS. Five mothers of children with DS who were younger than 3 years of age were involved in the project. They carried out two activities with their child, participated in an online workshop, and answered a questionnaire. The questionnaire’s answers were subjected to thematic analysis. This analysis revealed four main themes: motivation for learning and applying mediational strategies in a family environment, mediational styles applied during activities, language and cognition, and the family as a part of the educational environment. Based on the findings, new lines of future research are suggested. Full article

The ongoing transformation of mobility, including new services such as on-demand mobility, raises the question of how services need to be designed so that everyone can use them. The number of persons with mobility impairments is increasing as a result of demographic change, and with the current amendment of the law, it will be mandatory in Germany to take these person’s needs into due consideration. After all, a transport provider’s success relies on sufficient demand in society (including persons with and without disabilities). Due to changing mobility routines, increased comfort, and other individual personal requirements, vehicles smaller than conventional buses are necessary for passenger transportation. The following investigation is a research study, which is based on an intensive literature review and expert interview study. The goal of this work is to evaluate the current status quo of the German public transport system with respect to inclusive on-demand services and their satisfaction with user requirements. Therefore, guideline-oriented interviews with experts from the mobility sector were consulted and analyzed. For this purpose, the procedure of the qualitative analysis was used. Furthermore, user analysis and methodological processes were conducted in order to strategically establish necessary measures. On the one hand, the current initial situation is addressed and initial experience with these new services is reported. The current focus is on the automation and electrification of these vehicles. In order to make them accessible to all potential customers, ergonomic requirements should be considered from the beginning. The previous experiences with other vehicle classes as well as the legal framework conditions are to serve as a benchmark. On the other hand, existing challenges will be discussed, and necessary steps will be worked out. A result of this situational analysis shows that the currently available vehicle concepts do not fulfill all requirements. It is important to consider the vehicle and the barrier-free mobility chain (booking and paying for the journey or vehicle, as well as boarding, traveling, and alighting). Overall, the design of barrier-free mobility systems requires a process of both political and social rethinking in order to succeed. Full article

There has been growing recognition of the impact of COVID-19 and the restrictions implemented to contain the virus on mental health. This study provides a preliminary assessment of the longitudinal impact on state anxiety in individuals with disabilities and a subsample of individuals with visual impairment (VI). Two surveys were conducted in April–May 2020 (T1) and March 2021 (T2) to explore state anxiety (State-Trait Anxiety Inventory). Participants who consented to being re-contacted were invited to take part in T2. A total of 160 participants completed T1 and T2. There were no significant group differences in median anxiety at T1; however, at T2 anxiety was significantly higher in those with disabilities and there was a trend towards being higher in participants with VI compared to those with no disabilities. While not statistically significant within any of the three subgroups, state anxiety decreased slightly in those with no disabilities. The absence of a disability affecting mobility, experiencing loneliness, and poorer sleep quality predicted state anxiety at both timepoints. While anxiety appeared to decrease in individuals with no disabilities, it remained comparatively stable, and higher in those with disabilities. Loneliness and poor sleep may need to be addressed to alleviate feelings of anxiety. Full article

Parents provide important insights into the psychology, behaviors, and activities of themselves and their children with intellectual and developmental disabilities (IDD). However, it is unknown how prevalent parental participation in IDD research is in general, nor the diversity of geographical locations and research methods of these studies with parental participation. The current review screened 7845 published works in 7 IDD-focused journals between 2010 and 2019. A total of 1519 articles, accounting for 19.37% of all screened works, included at least one parental measure. For each parental article, we coded the country/continent of authors/participants, measurement tools used to obtain data from parents (e.g., questionnaire, interview), and the focus of the measurement (i.e., about parents, child, or both). We found an increasing number and proportion of studies involving parents between 2010 and 2019. Most studies (76%) came from North America and Europe, whereas other continents such as Africa and South America represented less than 1% of all studies reviewed. The predominant (88.0%) measurement tools were questionnaires and interviews. More studies were about both the children and the parents (42.6%) than either only the children (31.3%) or only the parents (26.1%). Together, our review showed a somewhat limited diversity in parental participation in IDD research and these findings have important implications for future research. Full article

Anecdotal reports suggest that adequate housing and transportation could be fundamental elements required to ensure quality of life (QOL) for people with mobility limitations. Certain home- and community-based services (HCBS) are also necessary to ensure that housing and transportation needs are met. Understanding QOL as it relates to housing and transportation is critical for people with mobility limitations but requires appropriate assessment of these constructs. The aims of this research were to explore the relationships between housing and transportation on QOL for people with mobility limitations, to describe the current conceptual measurement issues and to propose dimensions of access that could facilitate assessment of QOL as it relates to housing, transportation and HCBS. A critical review of the literature was conducted by experts in disability, QOL and access theory. While evidence indicated a potential influence of housing and transportation on QOL for people with mobility limitations, the relationships between these concepts were weak and inconclusive. Moreover, the measurement tools used lacked appropriateness to specifically measure these constructs. Approaching these measurement issues within an access theory may better position future research to address the housing, transportation and HSBS needs of people with mobility limitations. Future research may consider elements of availability, accessibility, accommodation, affordability, acceptability and awareness to ensure access for people with mobility limitations. A better understanding of QOL as it relates to housing, transportation and HCBS will improve the quality of research, which may in turn improve access of adequate services for people with mobility limitations. Full article

Faculty and staff with disabilities are significantly underrepresented within academia and experience alarming rates of discrimination, social exclusion and marginalization. This review aimed to understand the experiences and impact of disability discrimination (ableism) among faculty and staff. We conducted a systematic review while searching six international databases that identified 33 studies meeting our inclusion criteria. Of the 33 studies that were included in our review, they involved 1996 participants across six countries, over a 25-year period. The studies highlighted faculty and staff experiences of ableism in academia, which focused on disclosure (i.e., choosing to disclose or not), accommodations (i.e., lack of workplace accommodations and the difficult process for obtaining them) and negative attitudes (i.e., stigma, ableism and exclusion). Twenty-one studies explained the impact of ableism in academia, including a negative effect on physical and mental health, and career development. Coping mechanisms and strategies to address ableism in academia were also described. There is a critical need for more research and attention to the lived experiences of ableism among faculty and staff in academia and the impact that ableism has on their health and well-being. Full article

Individuals with autism spectrum disorder (ASD) experience significant barriers to employment. This study aimed to look at the support received by individuals with ASD in gaining and maintaining open employment from their perspective. A phenomenological approach was adopted with participants (n = 9) participating in semi-structured interviews. Thematic analysis identified four key themes; being supported, feeling successful, career progression and expectations. The findings suggest that individuals with ASD receive support from many different sources in their employment including supervisors, co-workers and parents. The support they received from disability employment consultants was more focused on obtaining a job rather than job maintenance or career progression. Career progression was rarely discussed by participants with their disability employment consultant, despite some evidence of poor job matches and unused qualifications and skills (reflecting a poor investment for individuals and society). Despite this, participants reported feeling successful due to having a job, having pride in their work, and feeling valued by co-workers. The study highlights the need for more research on understanding the longer-term support needs of people with ASD in open employment. Changes in policy to better resource and incentivize disability employment providers could produce more positive outcomes for people with ASD throughout their working lives. Full article