Disabilities, Volume 1, Issue 4 (December 2021) – 12 articles

Disability sports have been globally promoted to achieve an inclusive society. However, the current opportunities for people with disabilities are few in terms of participating in supporting positions, such as athletic trainers. In Japan, many people with visual impairment (VI) work as physical therapists; thus, they can become active as medical staff in the sports field. An example of a medical assessment is the muscle tightness test (MTT); however, conducting it is expected to be difficult for people with VI. To improve this difficulty, the current study developed an assistive instrument (AsI) and examined its effectiveness. We recruited 22 physical therapists with VI. The measurement for MTT targeted the hamstrings, iliopsoas, gastrocnemius, and quadriceps. The participants performed the MTT using a universal goniometer (UG) and the AsI and filled up a questionnaire. AsI was compared against UG based on three aspects, namely, ease, accuracy, and measurement time. In terms of ease, significant differences were observed in 9 out of 12 questionnaire items. The mean (SD) score for “Comprehensive ease of the MTT” improved from 2.8 (1.0) to 3.9 (0.8). For accuracy, the AsI yielded a decrease in the total error of the measurement. Lastly, the measurement time for AsI was longer than that for the UG. Therefore, the AsI was effective in terms of ease and accuracy, whereas measurement time remained as an issue. Full article

Purpose: Collaboration between parents and professionals is essential to enable participation of children with disabilities. Participation is a widely researched topic in pediatric rehabilitation, and evidence for it providing opportunities for involvement and a sense of belonging in community and in larger society exists. There are, however, less research results on how collaboration builds participation pertaining to involvement in life situations. In collaboration with parents, therapists and teachers, the aim of the study was to describe factors that (a) promote and (b) prevent participation in life situations for school-aged children with disabilities, working towards participation in adulthood. Methods: The study applied a qualitative research design. The data was collected during the 2015–2016 academic year with five focus-group interviews by sampling procedure. The study involved five parents of children with disabilities, three therapists and two teachers. The research data was analyzed by inductive content analysis. Results: The results identified thirteen factors that promote child participation, with an emphasis on taking the child’s individuality into account. There were three barriers, which focused on attitudes or technical issues. Conclusions: The results suggest that collaboration on child-related factors has been well identified and implemented, but collaboration on enabling environmental factors needs to be developed. The results can be utilized to design what adults’ collaboration should focus on in promoting child participation. Full article

Individuals with disabilities face marginalization in society and are more likely to experience depression compared to the general population. Despite this, the health system in Jordan is not adequately equipped to screen for or manage depression as a comorbid condition. A pilot study using a cross-sectional design was used for this study. Eligible participants were between the ages of 18 and 85, had a physical disability and resided in Jordan. Depression was measured using the Patient Health Questionnaire-9, and risk factors were measured using a sociodemographic survey. Descriptive statistics were used to report on the prevalence of depression and Chi square and Kendall Tau B tests were used to identify relationships between independent variables and depression. The study found that 40.62% of the sample met the criteria for depression. Those who were not married were found to be at higher risk for depression. The analysis also demonstrated that the number of people in a household was positively correlated with depression. This study fills in gaps concerning the prevalence of depression and its correlates among Jordanian adults with a physical disability. Professionals in Jordan, including rehab specialists, have a role in both screening for and preventing depression, and this study acts as a point of reference for these professionals. This pilot study may initiate larger studies to better understand this relationship in Jordan. Full article

Due to changes in legislation and policy in the United States, higher education has become more available to people with intellectual disability (ID). Currently, over 6000 students with ID are enrolled in 310 colleges and universities. In the past decade, the federal government has invested over 100 million dollars in a model demonstration program aimed at institutions of higher education to create, expand, or enhance high-quality, inclusive higher education experiences to support positive outcomes for individuals with ID. This article will describe the impetus and impact of this funding as well as related changes in policy and practice. With the emergence of these opportunities, a field of research has emerged, offering new knowledge about what higher education can offer to students with ID as well as the positive impact these students have on their peers, professors, and campus communities. We have also begun to see documentation of more long-term impacts of higher education on students’ employment, independent living outcomes, and life satisfaction. By describing these policy, practice, and research developments, this article will provide readers with a better understanding of the background, current status, and future needs of the field of inclusive higher education for people with ID in the United States and potential takeaways for similar stakeholders in other countries. Full article

The purpose of this narrative inquiry is two-fold: first, to illuminate the views and experiences of Brazilian female Paralympians that helped shape their narrative identities, and second, to develop a better understanding of the reasons behind the gender inequality in Paralympic sports. According to the International Paralympic Committee, 1671 female athletes competed in the Rio 2016 Paralympics, representing almost 40 percent of the participating Paralympians. In Rio, Brazil had the largest Paralympic delegation in its history, with 287 Paralympians, of which only 102 were women (about 35 percent). The reasons why there is a significant discrepancy between male and female Paralympic participation are highly complex and little researched, particularly in Latin American contexts. In examining the complexities of these women’s narrative identities and their relationship with social norms, I draw on the insights from disability feminism, identity theory, and disability sport to analyze and interpret the Paralympic sportswomen’s narrative accounts. Individual interviews with 20 Brazilian female Paralympians from nine different sports revealed the intricate relationships each has with social norms regarding gender, disability, sport, and the body. Full article

Purpose: In Ireland, the complex needs of people with Spina Bifida and/or Hydrocephalus (SB and/or H) are treated across primary care and tertiary specialist services. Traditionally, there has been much variation in how primary care services are delivered. To increase equity, ‘Progressing Disability Services for Children and Young People’ is a policy which is being implemented to reconfigure children’s services into multidisciplinary teams, for all disabilities. These changes, and an apparent discontinuity of support in the transition to adult services, requires further research exploring service delivery processes. Method: This study explored parents’ perspectives of support services for people with SB and/or H. Eight parents of people with SB and/or H participated in semi-structured interviews which were transcribed and analysed using thematic analysis. Results: Six themes were generated: (1) Difficulty accessing services; (2) Impact of waiting lists; (3) Onus on parents; (4) Importance of communication; (5) Reduced service provision following the implementation of ‘Progressing Disability Services’; and (6) Lack of adult services. Conclusions: While the service redesign for people with SB and/or H and their families is still in the implementation stage, this research contributes to the evolution of these changes by identifying the enhancing aspects such as effective communication and the inhibiting aspects including a parent’s perception of increased responsibility for supporting their family member and barriers in access to services. Full article

Despite the substantial increase in the access of people with disabilities to higher education, university institutions continue to be an exclusive environment for people with intellectual disabilities. This paper aims to present a training programme for the employment and university inclusion of young people with intellectual disabilities at the Pablo de Olavide University in Seville, Spain, under the title “Training for the employment and autonomous life of people with intellectual disabilities”, which was launched in the academic year 2017–2018 and has already completed four editions. The programme includes a hybrid training system with specific university training oriented towards employment and autonomy together with inclusive training in subjects of various university degrees. The training is provided by interdisciplinary university lecturers together with support staff specialised in intervention with people with intellectual disabilities who come from experienced community associations. Other components of the experience include internships in companies, individualised academic tutoring of students, family accompaniment, and community inclusion with the use of the university residence as accommodation. Cognitive accessibility and new technologies are not lacking as supports in the process. This work shows the assessment of the fundamental actors of this experience during the four years of its development, and as a conclusion, it shows a high overall satisfaction with the programme and the radical change observed in the lives of people with intellectual disabilities after their time at the university. Full article

Background: Data on the health of adolescents with intellectual disability are scarce. This study describes carer-reported symptoms, chronic illnesses, level of functioning, and behaviour among Australian adolescents with intellectual disability. We compare students attending mainstream and special schools. Methods: Cross-sectional questionnaire data were obtained from a cohort of 592 adolescents (10–21 years) with intellectual disability attending school and living in South-East Queensland, Australia, in May 2007. We analysed data from a subset (176) who completed a health check before visiting their general practitioners. Results: Adolescents had significant health needs, and those in special education schools had worse health than those from mainstream schools. There was a discrepancy between the prevalence of significant psychopathology detected via the short form Developmental Behaviour Checklist (DBC-P24) and psychiatric conditions reported by carers. Conclusions: Given the significant health needs of this population, carefully designed and targeted programs, potentially including medical visits to these schools, are needed. Full article

To explore and integrate the perspectives of patients with hip and knee osteoarthritis (OA), their caregivers, and clinicians who are working with these patients about current preoperative rehabilitation (“prehab”) content and delivery. Participants were individuals with hip (n = 46) or knee OA (n = 14), their family caregivers (n = 16), and clinicians working with patients with hip/knee OA (n = 15). In semi-structured interviews and focus groups, participants answered questions regarding barriers to accessing prehab, gaps in prehab content, learning preferences, and delivery formats. Interviews were audiotaped and transcribed verbatim. Data were analyzed using Qualitative Description method. Four main themes were identified: (1) “I didn’t get any of that” discusses barriers in accessing prehab; (2) “I never got a definitive answer” highlights necessary information in prehab; (3) “better idea of what’s going to happen” emphasizes the positive and negative aspects of prehab; (4) “a lot of people are shifting to online” describes participants’ perspectives on online education. Our findings confirm the need for prehab education and the potential of online prehab education. The results inform the development of prehab educational modules based on users’ input. Full article

The COVID-19 lockdown and closure of schools, clinics, and community-based services put children with autism spectrum disorders (ASDs) and other developmental disabilities (DDs) at increased risk of negative outcomes. This study aimed to investigate parents’ perceptions of their children’s behavioural outcomes during the COVID-19 lockdown, parents’ satisfaction with services during this time, and willingness to engage in telehealth. A cross-sectional study was conducted in Ireland. Parents (n = 89) completed an online questionnaire that included the strengths and difficulties questionnaire (SDQ-P). Results demonstrated that children with ASD/DDs were vulnerable to negative outcomes including hyperactivity, emotional symptoms, problems with peers and fewer prosocial behaviors. Children’s behavioral outcomes (‘current sample’, n = 89) were also compared with pre-COVID-19 data taken from the Growing Up in Ireland Study (‘GUI sample’, n = 327). The current sample exhibited significantly more behavioral difficulties than the pre-COVID GUI sample (p < 0.001). For the current sample, scores on each of the five SDQ subscales were significantly associated with a total impact score, and parents reported dissatisfaction with support services provided and willingness to engage in behavioral telehealth. Commitment is required to identify barriers to services faced by families in Ireland and to address the need for adapted behavior support services during periods of emergency. Full article

People with intellectual disability are accommodated and cared for in a variety of settings in Australia. Direct care is delivered by a mixture of qualified health professionals (nurses) and unlicenced disability support workers in varying combinations depending on the complexity and chronicity of comorbidities experienced by people with intellectual disability. Although some of these disability services continue to employ registered nurses, the size and specialised education of this workforce is decreasing due to a myriad of policy changes, which has the effect of compromising continuity of care and adverse effects on health outcomes. The objective of this study was to compare the differences on the financial cost of a single case using different models of care with, and without, specialised registered nursing input. The single case had profound intellectual disability and multiple chronic and complex health problems and was cared for by a model that included 24 h registered nurse care and support. Four financial scenarios are presented, and the differences both in terms of actual cost, and potential health outcomes are discussed. This study has set the scene for a large study where health economic data can be compared against multiple cases, across a range of care contexts, in order to advance evidence about which models provide the better health outcomes for people with intellectual disability and associated multiple chronic and complex health problems. Full article

Children’s health and wellness are influenced by a wide range of biological, psychological or social factors with a rising number of children requiring supportive healthcare. Family-centred care is considered best practice paediatric healthcare; however, processes and actions are not well explored in the literature. This research aimed to synthesise the evidence on the processes of implementation of family-centred care for children with biopsychosocial support needs and identify outcome measures used in the studies. A scoping search across Cinahl, Medline, Web of Science, Scopus, Psyc INFO, Embase and Education Research Complete for English language publications published between 2005 and 14 October 2020 was conducted. A total of 42 studies met the inclusion criteria: a focus on the processes of implementation of family-centred care for children aged 0–21 years with biopsychosocial needs. Diversity in the implementation of interventions of family-centred care was evident due to heterogeneity in study populations, methodology and reporting. Health condition or impairment focused outcome measures were found to be standard with a paucity of outcomes measuring participation or activity. Theoretical and practical elements of implementing interventions were identified as novel and key attributes of family-centred care and contributed to a new standardised framework for the processes of implementation of family-centred care. Future research should address whether mapping family-centred care to the International Classification of Function model helps families and health professionals identify meaningful participation and activity outcomes, which in turn may guide the processes of implementation of family-centred care interventions. Full article