Disabilities, Volume 3, Issue 2 (June 2023) – 9 articles

Continuity of care is considered a key metric of quality healthcare. Yet, continuity of care in adults aging with congenital disability and the factors that contribute to care continuity are largely unknown. Using data from a national private administrative health claims database in the United States (2007–2018). we examined continuity of care in 8596 adults (mean age 48.6 years) with cerebral palsy or spina bifida. Logistic regression models analyzed how proximity to health care facilities, availability of care providers, and community socioeconomic context were associated with more continuous care. We found that adults aging with cerebral palsy or spina bifida saw a variety of different physician specialty types and generally had discontinuous care. Individuals who lived in areas with more hospitals and residential care facilities received more continuous care than those with limited access to these resources. Residence in more affluent areas was associated with receiving more fragmented care. Findings suggest that over and above individual factors, community healthcare resources and socioeconomic context serve as important factors to consider in understanding continuity of care patterns in adults aging with cerebral palsy or spina bifida. Full article

Background: Participation is often defined as taking part and being included in different areas of life. Leisure represents an important area of life for all people. People with disabilities have the right to experience leisure time in a self-determined manner. They have the right to participate in leisure activities on an equal basis with others. Due to various influencing factors, people with intellectual disabilities, especially those with severe to profound intellectual disabilities, are at risk of decreased participation. This is alarming because participation in leisure activities reflects quality of life. Purpose: The present study aims to review the empirical findings on leisure participation and its influencing factors in people with mild to moderate disabilities as compared to people with severe to profound intellectual disabilities. Method: A scoping review following the PRISMA-ScR checklist by Cochrane and the Joanna Briggs Institute (JBI) was conducted to examine research studies published in peer-reviewed journals between 2000 and 2022. The studies that were included relate to activities within the everyday leisure time of people with intellectual disabilities, regardless of age, gender, or severity of their cognitive disability. The categories of vacation and tourism were excluded so as to focus on everyday leisure. The sample was screened by two reviewers independently. In total, 27 articles met the inclusion criteria, with 21 articles referring to people with a mild to moderate intellectual disability and only six articles referring to people with a severe to profound intellectual disability. The evidence was summarized with a predefined standardized charting form, which was used by the two reviewers. Results: The results show that participation in leisure activities by people with intellectual disabilities can be limited, especially for those with severe to profound intellectual disabilities. This contradicts the guiding principle and human rights of inclusion and self-determination. Their participation in leisure time is extremely dependent on external factors, such as support people, leisure time availability, and form of living. Passive activities at home are often provided for people with severe to profound intellectual disabilities in particular; therefore, the need for interactive and self-determined leisure opportunities in the community is enormous. Various factors influencing leisure participation can be identified. Implications: The findings of this scoping review can be used to consider intervention, support, and barriers to enhancing leisure participation among people with disabilities as an important area of life. Full article

Older adults with cognitive impairment are at high risk of experiencing falls. Although no specific fall prevention guidelines presently exist for this population, exercise programmes to prevent falls are recommended. Limited literature exploring what older adults with mild to moderate cognitive impairment think about or how they make sense of the need for such programmes exists. This study explored the perspectives of older adults with mild to moderate cognitive impairment and their caregivers about exercise and physical activity in the context of fall prevention. Underpinned by Interpretive Phenomenological Analysis, qualitative semi-structured interviews were undertaken with nine community-dwelling adults (>65 years) with mild to moderate cognitive impairment and their caregivers (N = 6). Three themes of acceptance, denial, and accommodation were identified. The fluctuating concept of ‘self’ appeared to influence individual decisions to exercise or be physically active and what sort of physical activity to undertake more than any practical barriers. We suggest that healthcare professionals emphasise the concept of personhood, listening to and reinforcing biographic narratives of older adults living with cognitive impairment to foster a sense of autonomy, and shared decision-making while emphasising fall prevention activities that older adults with cognitive impairment might like to engage with. Full article

Background: The number of autistic individuals attending university and entering the workforce is growing, but there is a persistent employment gap. Higher education careers services offer students help to secure employment post-graduation. This research sought to identify barriers to and facilitators of success with regards to career advisors’ practice in helping autistic students prepare for job interviews and secure employment. Methods: A mixed-methods participatory research design incorporating surveys, co-creation workshops, and interviews with stakeholders was employed. Results: Quantitative results showed differences in what advisors and students/graduates viewed as the biggest barriers to employment, with students/graduates rating stress and professional qualifications significantly higher and advisors rating interacting with clients/customers significantly higher. Gender differences were also found. Qualitative results revealed the biggest barriers to be inflexible employers, interview stress, diagnostic disclosure, and confidence; facilitators included an individual focus, clear communication, strengths-based approach leading to self-insight, and mock interviews. Conclusions: Practices identified for better serving autistic students included discussing disclosure options, building confidence, reducing stress through a strengths-based approach, and mock interviews, following up to identify autism-friendly employers, focusing on the individual rather than the diagnosis, and communicating clearly with students/graduates. Full article

In recent decades, there has been considerable discussion surrounding what it means to age successfully, and what supports, services, and programs are needed to facilitate successful aging. Rehabilitation scholars advocate for models of successful aging that take into account the unique needs and priorities of those aging with long-term physical disability. The aim of this study is to explore how organizations that serve those with physical disability define successful aging for this population, and whether their understanding of successful aging is consistent with the needs and priorities identified by those aging with physical disability. To do so, we analyze qualitative data from a national online survey of disability organizations (N = 106 organizations). Organizations described the following domains of successful aging for those with physical disability: (a) autonomy and/or maximized independence; (b) living arrangement; (c) health and well-being; and (d) social connection and meaningful community engagement. Overall, organizations’ understandings of successful aging are consistent with the priorities identified by those aging with long-term physical disability. We discuss strategies that organizations can adopt to ensure that the programs and services that they offer facilitate these elements of successful aging. Full article

Background: COVID-19 restrictions in Ireland varied in levels of severity throughout 2020 and 2021. The aim of the present study was to explore the experiences of professional and family carers in supporting people with intellectual disabilities to make their own decisions during these restrictions. Methods: Participants recruited between July and December 2021 via social media, disability services, and academic experts completed a qualitative online survey. Results were analysed using reflexive thematic analysis. Results: Data from 16 participants (eight professional carers, eight family carers) were included. Three main themes were identified: 1. centring the person, 2. adapting to COVID, and 3. restricted lives. Anxiety, confusion, and boredom among adults with intellectual disabilities during restrictions were reported by both professional and familial carers. Professional carers reported some positive outcomes, including greater chances for independence among service users and new activities becoming available via online resources. Family carers reported more negative outcomes, including isolation from disability services. Conclusions: People with intellectual disabilities had their choices markedly curtailed during the restrictions. Future studies should focus on improving the ability of services to reach users who may not have the ability to attend services in person. Full article

Contemporary estimates of the association between functional impairment and health costs among United States (US) older adults who documented having pain are unavailable. We used a retrospective database design and developed unadjusted and adjusted linear regression models to assess total, office, outpatient, emergency department, inpatient, and prescribed drug costs between older US adults with and without functional impairment. We included US adults aged ≥ 50 in the 2020 Medical Expenditure Panel Survey dataset who documented having pain in the past month. We also included only those who had positive health costs. Among the 40,092,210 US adults aged ≥ 50 who documented having pain in the past month, we found 37% had functional impairment. In adjusted linear regression models, we found adults with functional impairment (versus adults without functional impairment) had 57.2% higher total health costs and 54.1% higher prescribed drug costs. We did not observe any statistical differences between groups for office, outpatient, emergency department, or inpatient costs. In conclusion, the higher total and prescribed drug costs we found among US older adults with pain and a functional impairment draws attention to the financial burden of functional impairment among these individuals, which needs to be addressed. Full article

Individuals with cerebral palsy functioning at Gross Motor Function Classification System (GMFCS) levels IV and V are unable to use hand-held walkers and require supported-stepping devices with trunk and pelvic support to allow overground stepping in natural environments. This scoping review explored what is known about the use of supported-stepping devices with individuals functioning at GMFCS IV or V. Comprehensive database and hand searches were completed in December 2022. Of 225 unique citations, 68 met the inclusion criteria: 10 syntheses and 58 primary studies including randomized, non-randomized, qualitative, observational and case study designs. Primary studies included 705 unique individuals functioning at GMFCS IV or V, aged 9 months to 47.7 years, while surveys and qualitative studies included 632 therapists. No new experimental studies have been published since previous reviews, however, lived experience and descriptive data suggest that upright positioning and mobility in supported-stepping devices have psycho-social significance with positive impacts on individual self-esteem and autonomy, as well as influencing the perception of others. Improved head and trunk control, use of hands, stepping and independent mobility may promote fitness, functioning, fun, friends, family and future, although environmental and physical challenges may limit use in adolescence and adulthood. Further research on all aspects of supported-stepping device use with individuals at GMFCS IV/V is warranted. Full article

Less than 7% of published works are accessible. To overcome this book famine, the Marrakesh Treaty was enacted with the view of enhancing access to published works for people with visual impairments, blind people, and people that are otherwise print-disabled. Leveraging survey data from six European countries (Italy, Ireland, Sweden, Germany, Hungary, and the Netherlands), we investigate the respondents’ knowledge of the Marrakesh Treaty and whether they experienced improved access to printed material after its implementation. The results of the survey show that people who are blind and use braille printers are more likely to report an improvement in accessing printed material, suggesting that the exceptions provided for in the Marrakesh Treaty best support the reproduction and availability of copyrighted works in braille rather than other formats. Full article